The Autism Life

Of Change and Faith--Of a World of Possibility

2010-11-08T06:44:00.004-06:00

In the Chinese Zodiac, 2010 is the year of the Tiger—a sign of courage—a most apt description of this family’s journey. After a family vacation this summer, our first family vacation ever, we decided Midwestern living just wasn’t the life we were meant to live. After 24 hours of island life in Florida, we all quickly realized we had been living in the wrong latitude. At first we thought it would take about a year to make the big move. I applied for some jobs and lo and behold the first job I applied for I got. But this also meant moving a month after getting back from vacation. This meant moving ahead of my family by several months. This meant some sacrifice and courage on all our parts. But some things are worth the sacrifice and the courage.

Some might think such tremendous changes in a relatively short period of time are early characteristics of some mid life crisis. Some might think such decisions appeared to be without thought or plan or control. Some might think we jumped into something bigger than we bargained for. But when you feel like home on vacation you know something doesn’t quite fit into the bigger picture, something that you have been denied for far too long. We make decisions for any number of reasons—for others, for ourselves, for our children, for our jobs, for love, for comfort, and for fear of change. This decision to leave the leaves and snow and green grass and oak trees wasn’t for any other reason than that of coming home. Coming home to a place we’d never been before. I can’t explain it—this place just feels like home.

Maybe it is the ocean—on some evolutionary scale, it pulls at the soul like a siren song. Maybe it is the tide—putting an ancient, long forgotten rhythm back into life. Maybe it is the million grains of sand—sinking feet and soothing walks putting priorities back into perspective. For whatever reason, I find solace here amid the palm trees and breezes in ways that I have not before.

Everything is new right now and not all is wine and roses. To some degree it is challenging. Getting used to new ways of doing just about everything can be a bit of a culture shock. Just going to Wal-Mart is an exercise in patience for me. I’m a walk in / walk out kind of Wal-Mart shopper. In central Florida, there is no such thing. The check out person has some intrinsic need to tell me about her life or know about mine, either way checking out takes an average of 6.2 minutes longer than normal now. The schools are different too. Hallways are outside, cafeterias are outside, PE is ALWAYS outside, and I think the wall mural is the official state art project. If there’s a will, there’s a way—and if there’s a white wall, by Jove, there’s a mural on it.

Yes this change has been drastic and challenging and I constantly search my heart to know if I have done the right thing. One walk on the beach tells me it is. But I question it, after IEP meetings gone awry (now there’s a blog title…). I question it when confronted with phrases like, “Well we don’t do that here.” I question it when I see how far some places have to go in making inclusion a natural choice in life. Then I go walk on the beach and it all makes sense again. This move has made sense in almost every way except for Ewan’s education. Sometimes I look at this move for him and wonder if it was the right choice. His needs have come first for so long that I wonder if we have done the right thing by moving here not knowing for sure if it was the best thing for him. And then I wonder if in the end this move will have been the best thing in the world for him and how I think of him.

Change is hard and no one really wants to change, rarely does change involve choice. We change because we must not for the sake of something to do. The biggest change this move has brought about is the 1:1 situation. Ewan has had a 1:1 aide for several years now, and although her official title was paraprofessional—she was better known as The Sun, The Moon, and The Stars in our house. When Ewan left school several years ago it was a giant leap of faith on my part to send him back without a posse of guards all carrying electronic tracking equipment. I couldn’t see giving him back to them, the ‘them’ being anyone not me. I couldn’t envision anything that would make it possible for him to walk back into the building. I couldn’t imagine a reason good enough to make me let go. That is, I couldn’t imagine it until they hired quite possibly the only person I would ever trust this boy with outside of the genetic bonds of family.

The Sun, The Moon, and The Stars was the perfect balance of independence and dependence for Ewan. She knew when to let go and when to open arms and comfort a boy who tiptoed on the line between balance and imbalance. She knew when to step back and when to push forward with a boy who struggled to know himself. She knew when to laugh and when to put on a straight face in front of a boy who says so much but often struggles to know how and when to voice it. In some ways she was me, his other mother, and in some ways she knew him in ways I never will. And too soon, we couldn’t imagine life without her. Quite possibly, we were more dependent on her than Ewan was. In some ways, we needed her every bit as and if not more so than Ewan. So when we chose to leave the Midwest we knew we were saying goodbye to a universe that could not follow us. And it has been one of the hardest things we’ve had to do since letting Ewan go back to school after he went on that ‘walkabout’.

Moving down here we knew getting and finding a replacement was on the verge of impossible. And so it has been. As it turns out, life has a way of knowing what you need when you need it. It also has a way of letting you know it’s time to push forward. Life is funny that way. Pulled in this direction by an ancient tidal force, a higher power showing us all that life has to offer if we but imagine it—a life without a 1:1. This is not something I had imagined happening for many years to come, something I could not see ‘just yet’ for Ewan. And I wonder if this is but a wake-up call from a higher power telling us to have faith in just how much Ewan can do. I do not know if this new situation will work yet. Life without your normal universe seems kind of bleak at first. But it’s a little like the profile picture for this page. A door in the darkness—possibility that exists only when you push forward into the future—a giant leap of faith into the unknown.

Upon hearing that he did not have a new ‘helper teacher’, Ewan exclaimed, “You mean they think I’m smart enough now that I don’t need one anymore?!” I never knew that is how he felt about having that extra bit of help. I never knew that he felt lesser in any way because of it. I never realized learned helplessness would sneak up on me as much as anyone—that maybe we were holding him back for fear of what ‘could’ happen or becoming complacent in the status quo without thinking of a future life. Seeing Ewan in a whole new light, I do not doubt that he can do this. In fact, I think now if it does not work, it will not be through any fault of his but rather because of a lack of preparedness by others. Ewan can do anything he puts his mind to, this much I have learned over the years—and now I must trust him to do it on his own. I have faith that his life is a life of possibility—and the first step is always the biggest—a giant leap of faith into the unknown.

I think this move has given us all what we have needed even if we didn’t know we needed it.

2010-11-08T06:44:00.002-06:00

It’s 1:30 am and I’m wide awake. Insomnia has set in and it is only partially because one of my children is apparently coughing up a lung. The rest of my late night wondering has much more to do with my Ewan than anything else. Ewan, the child behind the Ewanisms and source of hilarity and profound autistic introspection. Ewan, the child behind my source of amazement in what being autistic really means. Ewan, the child who gives me a new found respect for what it means to live in a neurotypical world. Ewan, the child who often leaves me in awe at what he can do. Ewan, the child who has me up at 1:35 am.

For our family, rightly or wrongly so, the world has spun somewhat on a Ewan axis. For the past 8 years life has revolved around therapy visits, doctor visits, social stories, schedules, and more PECS symbols than you can shake a stick at. For the last 7 years life has also revolved around meetings. The IFSP meetings held in my living room around cookies and coffee. The IEP meetings held in classrooms, boardrooms, and sometimes the various closet space huddled around thousands of papers and still more cookies. Throughout the years these meetings have been a significant source of stress for this family. Big meetings, small meetings, just sign this or that kind of meetings—all have a certain level of significance to this child’s life. What may seem small and inconsequential to you, weighs on my mind and on my soul like a 10 ton boulder. What may seem like merely the tedium of a 9 to 5 job to you, is really the life and future of my son. One choice, one decision, one check mark on a form to you, is really this child’s whole trajectory in life.

These meetings have brought out the entire spectrum of human emotion in me: from anger to terror to elation to eternal despair, I’ve felt it all in any number of meetings. Afterwards, the regret and feelings of guilt sink in and you’re left with the twin punishing thoughts of ‘Did I do enough for this child?’ and ‘Could I have done more?’ These meetings have tested my faith and my reserve in ways I never thought possible. Raising a child with special needs is today less about understanding the nature of the disorder and more about understanding the complexities of state laws and educational systems. It’s not enough to know everything there is to know about what it means to be autistic, there’s an entire chapter of your life dedicated to understanding what the other side of the table has to do, wants to do, refuses to do, and cannot do. And it can be both exhausting and draining.

It seems impossible that a mere two hour meeting can hold such power over your life and yet it does. Before the meeting, hurling in the parking lot seems like a good idea and after the meeting, a stiff drink definitely seems like a better one.

For me, in its most elemental form the IEP meeting and ensuing relationships has come down to trust. Trust that we are doing what is best for this child. Trust that others will keep this child first and foremost in their thoughts amidst a sea of other children. Trust that others will care for this child in ways that equal my own care. Trust that this child will be safe and kept from harm. My own personal issues come partially from unheard levels of control freakishness and partially from an experience that has left its own scar upon my psyche. When Ewan was five, he unknowingly to the teachers and staff, left the school building and was found a mile or so down the road. He had crossed umpteen lanes of busy lunch time traffic and was found without a scratch only by the grace of God. Since that time Ewan has been blessed with probably the one person on the planet I could, would, and did entrust my son to for the past 3 years. This person has been the sun, the moon, and the stars to Ewan, to me, and to my husband and I cannot imagine having a sanity left intact had she not been placed in his life.

And as of last Friday when we moved cross country, the sun and the moon and the stars has eclipsed out of our life and it has not been easy to leave our universe some 1,000 miles to the northwest. Now, we are in a new school, new town, new state with its own new set of systems, laws, and regulations and we are left scrambling in the dark searching our way through the shadows to find the light once again. I thought the hardest thing would be to leave Ewan’s cocoon of safety and trust and relationships back home and I’m finding that the hardest thing is starting again and taking that giant leap of faith towards something new. Building trust, building relationships, creating a future and writing a new chapter is far more difficult than closing an old one.

And in the meantime, I continue to not sleep. Too scared to sleep, too tired to think, too worried to breathe. This is the stress that follows you in this special kind of life, from birth to adulthood. The questioning of every decision you make no matter how large or small. It’s not Welcome to Holland anymore, it’s Welcome to Insomnia.

You have to live it to get it

2010-11-08T06:42:00.001-06:00

For the past two weeks I have been living in Florida while my family marinates back in Illinois for a bit longer. The next few months are going to be a challenge for me—the one who feels lost and adrift with no discernible role in life; for my husband—the one who has now undertaken ALL the roles in life; for my daughter—the one who has gone from a carefree teenager to a governess; for my youngest son—the one who’s always been a daddy’s boy and thinks the next few months are like one big campout; and for Ewan—the one who’s rock has just floated down the river towards an island in Florida. I can assure you I am not the only one left adrift in the tide that just swept through this family.

Surprisingly though, the first two weeks haven’t been a total disaster. In fact, with the exception of a few little bumps in the road, it’s going quite well for my Illinois half. And for me, well, I’m in the process of remembering who I was before marriage and before children—the ‘just me’ that hasn’t had to change a diaper, shuttle sick children from doctor to doctor, pick up toys, find a therapist, take a child to a therapist, or even be the therapist. The ‘just me’ that seems to have enlisted an autopilot self-protection mechanism from feeling totally lost and overwhelmed without my other self. The self that has thought about autism in every which way possible, the self that has continually searched for that missing piece that would help me understand just a little bit more about what our children are thinking and needing, the self that constantly pushes the boundaries of possibility for what it means to be autistic, the self that challenges everyone else to open their minds and hearts to allow room for the child with autism in the community.

But that’s not me right now. ‘Just me’ doesn’t really know the autism community in Florida yet. This ‘just me’ is on the outside looking in. The ‘just me’ who is now working behind the scenes rather than up close and personal with families and children. The ‘just me’ who doesn’t even have a chance to hear the ‘isms’ spring forth from the most philosophical children to walk the planet. This me feels like a planet spinning out of control, lost and disoriented because the gravity of autism no longer holds me in my place.

Because you have to live it to get it.

You have to live it to get it because being in the trenches 24 / 7 is not the same as working with the autistic child. Being an ‘Autie Mom’ is not the same as being the best therapist in the world. Autie Moms and Dads don’t get breaks, vacations, holidays, or sick leave. Autie Moms and Dads don’t have the luxury of choosing what they want to deal with or passing on responsibilities to the next shift—all the needs and wants and emergencies hit you with the force of a runaway train. Because at the end of the day we don’t get to clock out—some of our days keep going well into the wee hours of the next morning. The Autie Parent is more like a four star general running a two front war—with squadrons covering sensory input, patrols looking for potential meltdown triggers in the area, whole divisions dedicated to communication issues, social demands, and behavioral programs, with units posted at school, at the clinic and in the backyard waiting to pounce on the slightest unrest.

But that’s not me right now, this me is several states away from the action and operations base. This me merely gets the abbreviated public affairs version of the days events. This me is on leave--my passport to Holland has been temporarily revoked and I already feel out of the loop. My perspective is skewed—my four star general status has been changed to a private and it feels like starting over in what I thought I knew about the autism life. And I can already tell it’s going to take awhile to get acclimated once again when the troops relocate to the new base and I’m the new guy just trying to fit in.

Because you have to live it to get it.

Finding Home

2010-11-08T06:41:00.001-06:00

Last night I traveled from my new home in Florida to my old home in Illinois on a noisy but uneventful flight. All in all, I drove from my workplace in Daytona Beach to Orlando’s International Airport parking lot, rode in the shuttle from Hell with Gus the maniac driver from the parking lot to the terminal, flew from Orlando to Indy next to a passenger who thought the short shorts from the 80s were making a comeback, ran from the gate to the car like a madwoman, and then drove from Indy to Charleston in a near exhausted state. A long journey to my family and even longer journey to figuring out one of life’s most existential questions: where and what is home?

I moved cross country two weeks ago—alone and packed to the gills in my little Hyundai. I left my family back in Illinois till the semester ends when they can transition from sweaters and coats to shorts and flip flops. It was what I thought was one of the hardest days of my life. I’ve never actually been away from my children and husband for more than three days and here I’m attempting to be separated from them for three months. It’s only been two weeks but already I can tell things they are a changing.

For one, I’m a little uncertain as to who or what I am right now. I’m not divorced—I’m still a happily married woman but it’s hard to be a wife to a husband that isn’t there. I’ve not abandoned my children but it’s hard to be a mother to children that live several states away. I’ve been left in limbo it seems—not wholly this and not wholly that—somewhat a ghost of my old self or at least the self that I’ve built up over the past 15 years. The past two weeks have left me searching for who I really am and whether I can be comfortable with a self that is neither fully wife nor fully mother—just me. The ‘just me’ that doesn’t know what to eat or what to watch or what radio station to turn to. The ‘just me’ that has very little to think about other than starting a new job in a new state. The ‘just me’ that isn’t advocating for anyone or anything on a daily basis. The ‘just me’ that seems adrift, albeit in a enlightening not frightening way.

Yesterday as I drove to the airport I felt like I was holding my breath—and not entirely because I had to pee like crazy for 45 minutes straight. On the plane I felt an eerie calmness that this flying novice never feels on a jumbo jet hurtling through the sky at 30,000 feet which ironically had nothing to do with any mood enhancing medications. It didn’t exactly feel like I was going home—it’s not the place that I’m attached to anymore. I’ve already said goodbye to all of that. It’s not as if the house we live in feels like sanctuary. It’s not as if the town is where I feel like I should be anymore. There was something else to the euphoria that struck as I ran through the airport in kitten heels pushing tired, crabby, and sluggish fellow travelers out of my way. And it hit as soon as I saw my family practically bouncing out of their seats with joy—this is my home. These four people are home to me—wherever they may be. My home is not a stationary building with four walls and a roof—just as my church is not a building with four walls and a steeple.

I’ve long known that my religion is not dictated by anything other than those singular moments where I know I am beside some greater power—whether that be in the living room, on a walk, or inside some elaborately designed architectural masterpiece. My religion has no name and my home has no address. My home is the intersection of them and me. Understanding this, I finally let my breath out in that one moment. The mother and the wife and the long buried ‘just me’ had come home. And I know come Monday when it is time to leave again, that the hardest day of my life will not have been the first time I left them but the second.

A tale of a boy and a sandwich

2010-09-03T15:42:00.001-05:00

Right now I’m crying over a sandwich. I know, this sounds utterly ridiculous and most of you are wondering if “Miss Lisha has left the building,” but I can assure you there is a sound and rational reason for my tears of joy.

Yes, joy.

It’s not that I have discovered the best kept sandwich secret in the greater Charleston / Mattoon region. It’s not that I have discovered some secret ingredient to the Crabby Patty recipe. It’s because my son asked for a sandwich and ate it. It’s that simple. He asked, I made it, and he ate it—with excitement and eagerness.

Now before too many of you think Miss Lisha is easily entertained let me tell you a story about a boy….

Over 8 years ago, there was a little boy born in a small hospital amidst laughter and joyful anticipation. Within seconds of this child’s birth, his parents knew without a doubt that he was different. He wasn’t your average everyday newborn baby. They didn’t know what it was about him that was different—they simply knew he was.

Over the following weeks and months the things that made him special became more and more obvious. Things like not sleeping, staring at the blinds and shadows on the wall, and always fighting against human contact. There were also things like nursing round the clock every 45 minutes and then throwing it all up—a constant vicious cycle of need and refuse. No one really knew what was wrong—it was as if everyone was dancing around the edge of some greater mystery.

And so they waited for the kinks to work themselves out and simply hoped and prayed that it would. The boy grew and grew but he didn’t talk and he didn’t eat much—people and food and places and things were sometimes just plain frightening to him. Eventually his parents found a word for the why—autism—and from that day forward life became a series of therapy visits and doctor visits and tests, tests, tests.

The boy learned to communicate, he learned about himself, and he learned how to learn—but he still didn’t eat. Then one day his mother drew a line in the sand and said, “You’re going to eat this young man and I don’t care if you throw it up.” And throw it up he did. Finally, the boy and his parents ended up in a feeding clinic amidst a plethora of white coats, khaki pants, and big hair—all telling them the same thing—it’s not that he won’t, it’s that he can’t. It took many days and weeks and months before this mother and this father finally understood what all those fancy therapists were saying—it’s not that he won’t, it’s that he can’t.

And so this mother and this father learned how to help this boy and they worked day in and day out on making food an enjoyable part of life—three times a day, every single day, year after year. They erased the line in the sand and started from scratch. Learning to learn and teaching to teach they saw this boy willingly reach out for food. But still, he could only reach so far before he drew back again and it’s not that he wouldn’t, it’s that he couldn’t.

One day this mother ended up in a therapy clinic with a video camera in hand to show everyone else that again it wasn’t that he wouldn’t, it was that he couldn’t. And finally, finally, the Redhead with eyes that saw what everyone else missed whispered the name for all the tears and struggles—Eosinophilic Esophagitis. His parents had to take food away in order to give it back again—and for the first time in four years of his life, this boy could eat food without pain. Yet each bite came with fear and trepidation—each bite brought back the ‘what ifs’ and it took all his courage and strength to reach out and just take a bite. Despite his fear, despite his pain, despite everything—he continued to reach and to trust and to learn.

And despite all of that, today MY son asked me for a salami, lettuce, cheese and tomato wrap. I made it and he ate it. He gleefully ate every last bite of it. He ate it, and I cried. And when Ewan asked me, “Mom, why do you cry?” I replied simply, “I cry because I am so proud of you and I cry because I’m happy and I cry because it’s been a long, long road to get here.” To which the literal young man said, “Mom, we went from the kitchen to the living room—it wasn’t THAT far.”

Miss Lisha's rules to adventuring

2010-09-03T15:41:00.004-05:00

My recipe for starting an adventure...

1.) No therapy! Adventure Club is not about therapy—it is about having fun and exploring the community as a group. Do NOT introduce therapy into your adventures! Adventure Club in and of itself may be therapeutic but it is in no way THERAPY. These kids have enough therapy in their lives, it’s time to allow them to let their proverbial hair down and be themselves.

2.) Make fun your only goal. Because this isn’t therapy, please don’t find yourself in a situation where therapists (or future therapists) run your adventure. Lord knows I think therapists practically walk on water and thank heaven for them every single day—BUT, you must remember therapists (the good ones anyway) always see the goals, the problems, the difficulties. They simply cannot turn it off. I’ve had the privilege of working with some of the greatest therapists to walk this earth and I can tell you that it is intuitive for them (the good ones anyway). They are constantly seeing the problem, finding the solution, and working in 15 goals along the way. And therapists know how to make therapy fun (the good ones anyway), however, at the end of the day, it is still therapy. If a therapist moves your adventure forward, your adventure just became therapy and you can refer back to rule number one… Therapists (and teachers as well!) can be of help to you though and give you ideas or help you recruit other families but keep the ONLY goal of the adventure as F-U-N.

3.) Make it a family affair. Siblings and parents should be involved in the adventure. Adventure Club is NOT ONLY about the child with autism. The child with autism may have brought you to this adventure but don’t let that be the only thing that keeps you together. Siblings need support too, siblings need relationships too, and siblings sure as heck need to have just as much fun as everyone else! Parents need to be a part of the adventure in order to see just HOW much fun being together and trying something new can be. If parents drop off children and pick them up later, you have missed the boat as to what an Adventure Club can really be. I am a family oriented person and I think we need MORE family activities and LESS drop your kiddo off and go run errands kinds of activities.

4.) Use and expand the obsessions. I love the autistic obsession. Why? Because it gives me a place to start. Every kid I’ve ever met on the spectrum has one and it gives you a way to connect with him or her. So stop forcing square pegs into round holes and embrace the obsession. If you have future scientists on your hands, do science. If you have future artists on your hands, incorporate art. If you have future musicians on your hands, turn up the volume and jam on. Don’t think about what YOU as an adult or parent wants to do or what YOU find interesting—do what the children love—because if you don’t the fun just got sucked out of the adventure. And you need to refer back to Rule #2 about F-U-N.

5.) Expose your children and yourselves to something NEW. In some cases, a child may not show a preference for one thing or another and it seems difficult to engage the child. Continue to expose the child to new activities like science, art, music, drama, yoga, games, and all the other parts to childhood so every other kid gets to experience in life. Learn to think about the world as a series of concepts—light, shadow, absorption, carbonation, flight, gravity, and so on. Take the concept and start simple and get more and more complex. Learn to see the whole world as an adventure waiting to happen. Don’t be afraid to try something new because of sensory issues or language demands or cognitive concerns. Don’t be afraid to fail. Often it’s only through our failures that we see and fully understand our successes.

6.) Get OUTSIDE. How many outdoor classrooms do these children have? How many therapy cubicles have grass under feet and wind in your hair? Not many. All children, but certainly those with autism, are spending TOO much time inside the house, inside the school, and inside the clinic. Too much time sitting at a table or a desk working, working, working. If it’s cold, wear a coat. If it’s raining, grab a poncho. If it’s hot, hydrate often. Whatever the weather get outside and enjoy what I refer to as Nature’s Playground—you’ll never find a sensory clinic that can even remotely compare to the natural environment. Being outside will also push you to think faster, more creatively, and pushes you to be more flexible.

7.) Throw your checklist out. Some of us are checklist people and some of us want to hurl when we see a checklist. I’m more of the hurling variety. Checklists and goals and ‘must do’ objectives have NO place in an adventure. Checklists smack of therapy. If we want to encourage the development of play, TRUE play, in our children then we cannot expect such spontaneity when we gleefully check off the time together minute by minute. These children are exposed to constant routine and predictability—which is a good thing that is often taken too far. Spontaneity has a role in the autistic person’s life. Life is not a checklist, life is not a Boardmaker schedule. Life happens and it happens in ways you can rarely predict. Always bring a variety of toys / activities to the adventure because you never know when a beach ball tournament will break out and change your schedule. Live in the moment and I guarantee that you'll be rewarded with an unprompted hug and smile. Let these children explore HOW to use the executive functioning muscles in that frontal lobe. You have to learn to deal with the unexpected, you have to learn how to fail in order to succeed.

8.) Embrace creativity. Let the creative juices flow and if your rocket day has turned into water day, so be it. Encourage and foster creativity by being creative yourself. Learn to say, “I wonder what would happen if…” Creativity and spontaneity often go hand in hand and when the checklist is thrown out, you’ll see creativity explode tenfold.

9.) Acceptance rules. Don’t find yourself segregating the children with Asperger’s Syndrome from the children more profoundly affected. For the sake of these adventures, autism is autism no matter what the form it comes in. Embrace the differences—each child will have his own strengths to share with the group and we all learn from each other. Don’t allow yourself to criticize or judge how others handle situations—we’ve all been judged before and not one of us has ever liked that feeling. These adventures will create friendships you never thought possible and will open doors to compassion and understanding among us all.

10.) Get help. Find an army of volunteers to help your adventures along. High school students, college students, friends and neighbors can all have a place in your adventure. Provide certificates of volunteerism to those who participate. All high school students need volunteer time / community service to get into college and most college students need the very same thing to graduate. Extra hands mean an extra minute or two for the parents who so desperately need that time to develop relationships with other parents (or to even catch a chance to just BREATHE!).

When in doubt remember the definition of adventure:

A.) To venture upon, undertake, or try

B.) To take a risk, dare.

Dare to start an adventure today!

An Adventurous Summer

2010-09-03T15:41:00.002-05:00

Parents of children with autism share a lot of similarities no matter where they live, what they do, what income bracket they fall in, no matter what age they happen to be. One of these similarities is that we often have our own traits of the autism spectrum. Some of these traits may be subtle and some of them may be glaringly obvious—but these traits are there in all of us.

My husband and I both have traits of our own, each different from the other. Some of my issues are sensory related, some of my issues are socially related, some of my issues include a wicked word retrieval problem exactly when I need to say just the right word. I have my own problems with eye contact and find myself looking more at your mouth lip reading than I do looking you in the eye. And often, I’d rather just stay home in my own ‘Miss Lisha’ comfort zone than to venture out and deal with crowds, noises, and the unpredictability of life. There’s just far too much that this control freak can’t control out in the big scary world. This summer I have been determined to step outside that comfort zone to push myself and my son into finding a bigger world. This summer I created Adventure Club for myself, my son, and my local autism families.

Adventure Club has been about a great many things. First and foremost, it is about fun. Adventure Club is not therapy, it has no goals, it has no underlying agenda. It exists to push us outside the comfort zone together. It exists for the purpose of trying something new. It exists to show our children and ourselves that we too can have a little fun together. Adventure Club has no percentages, no objectives, no benchmarks, no requirements other than a smile and a giggle. Adventure Club is about elevating the status of play in the world of autism—the kind of play that just happens—without a plan or a strategy or a goal.

Play for the sake of play.

Sure children with autism have play based options in the classroom and

in the clinic—but this kind of play comes with a chart and a form and a checklist. True play doesn’t happen with a chart. True play doesn’t come with an assessment. True play begins when we step back and let it evolve all on its own.

Adventure Club is about learning to be a part of a community and to break through the fear that keeps us bottled up inside the safety zone. It’s often so much easier to just stay home. I am the queen of avoiding tricky situations and had it not been for Adventure Club, I would have happily lived the summer inside my own house and yard. But there is a greater world just waiting to be explored and I know my own children have looked forward to each week’s new Adventure with joy and anticipation.

In the world of autism, parents and teachers and therapists tend to err on the safe side and plan out every second till life becomes a series of social stories, schedules, PECS, until we’ve created an expectation that THIS child is going to act like an adult 99% of the time. Children with autism are above and beyond anything else, merely children. Children who cry, who get irritated, who hate to wear shoes, who have a meltdown in the most inconvenient of places, children who throw things, children who say the most inappropriate of things in exactly the wrong place.

Adventure Club has been about letting our children BE children amongst a group of people who understand the meltdown, understand the language difficulties, and understand why your child is standing on top of the table or walking down the middle of the bowling lane (whereupon we all think, well at least he still has his pants on).

Adventure Club has been about dealing with the unpredictability of life—about all the things you CAN’T plan for and doing it with a group of parents and friends who handle the difficulties with grace and laughter. Our children need understanding and patience and more of just about everything you have in your arsenal as a parent—and who better to try new things with than other ‘Autie’ parents? But life cannot be lived by social story alone. You cannot prepare for everything—trust me I’ve tried and you simply cannot grasp all the variables to life’s little equation. You cannot always get the schedule just right—there will always be that one little hitch in the plan that throws the whole thing off. Adventure Club has been about rehearsing for the big performance—the one that lasts a lifetime.

Our children sit through hours, days, months and years of their life in a therapy cubicle trying to work out how to speak and what to say, what to do when and why to do it at all. They learn the proverbial rules of the road to living on this planet. Yet life does not happen in a clinic. Life is messy, life is loud, life is unpredictable and hard, and life doesn’t come with a social story. There is a time and a place to all things including a time to push life beyond the social story, beyond the expected, beyond the safety and comfort of our own autism planet. This is when the real adventure starts.

Adventure Club has been all these things. Sometimes it is successful, sometimes it is not. But the important thing is that we TRIED. We broke through our fears and routines and dared to be a part of something greater. And we did it together. Adventure Club is about daring to push the boundaries of possibility. Adventure Club is about success and failure, and learning to get back up again when it all goes wrong. Because you can’t always know what your child will love or hate or connect with until you try it. Adventure Club has taught me that it is ok to fail and to learn from that experience—because when it hits just right there’s a spark that catches hold in this child’s spirit and turns the whole world upside down in just a single moment.

Stepping outside our comfort zones is when this child gets to use all the skills taught in the clinic and in the classroom. This is when the child gets to find his place in life. This is when the child gets to learn how to live. It’s not easy, in fact—it’s likely to be the hardest thing this child does in his whole life. Learning to integrate himself in a world meant for neurotypicals. A world where the music is too loud, the lights are too bright, and there are people in every direction you look. A world where life doesn’t stop just because you want it to. Our children are taught strategies to life in the classroom and in the clinic but it’s our job to provide opportunities to use them. OTs teach coping mechanisms for the bright, loud, scratchy world out there. SLPs teach us what to say, when to say it, and how to say it appropriately. Teachers give us the knowledge to understand the world. Parents provide the means to make it all come together. We all have our roles to play in creating a richer, fuller life for our children and when it hits just right—life can change in an instant. For this one brief summer, Adventure Club was the means to create a spark that will burn for an eternity in this community. Dare to believe in something more, dare to create your own adventure.

The Elevator Question

2010-09-03T15:39:00.001-05:00

This week I have been bombarded with things to do before the big move. Things to pack, things to clean, things to organize, and things to wrap up. On top of the obvious aspects to moving, I’m trying to get Ewan’s IEP review in before I hit the road. Over the years IEP meetings have run the gamut of resembling a war room meeting to a board room meeting to a social outing. Often with IEP meetings, the situation sets the tone and we’ve found ourselves in some interesting situations over the years from the scary, to the stressful, to the hilarious—one thing’s for sure, when it comes to Ewan, life is rarely boring. Yet something profound hit me this morning as I sat filling out a form for Ewan—I realized the words, ‘just how far he’s come’ aren’t just lip service, they are absolutely, 100% true.

I remember Ewan’s early intervention years quite clearly—maybe because my stress level was somewhere in the upper atmosphere during those years, maybe because of the uncertainty over the future but I remember his goals, his difficulties, his strengths, the whole enchilada like it was yesterday. I remember our IFSP meetings in my living room (and don’t I wish IEP meetings were also in my living room…) and I remember therapy traveling from the living room to the bedroom to the bathroom to outside to the store to the playground. I remember very basic goals of getting dressed, walking up and down stairs, saying the word ‘mama’. Today I sat down and filled out a form that brought the past up to today in an instant. Today I answered ‘never’ when I used to answer ‘always’. Today I thought how much easier life has become for Ewan over the years. Today I saw just how far he really had come.

Today I answered the elevator question.

It’s a rather simple question but profound in both its meaning and history. The question was: “Does your child seem afraid of riding in elevators or on escalators?” Today I answered NEVER, but several years ago I would have answered with an emphatic “ALWAYS!” In one question, I was instantly brought back to the time we had to take Ewan up to an EEG test at a local hospital. My husband and I were carrying Ewan through the hospital and because elevators were peppered throughout the building at the rate of one for every 10 feet, we had thrown a blanket over Ewan’s head and were literally RUNNING from the elevators in search of the stairwells—my husband resembling a professional NFL running back. At the time, Ewan had an extreme obsession with elevators—the kind of obsession that you love to hate. He would scream and cry to get to one and see the buttons and those magical sliding doors then once inside he would scream bloody murder at the top of his lungs as it began moving. So as my husband and I raced throughout the hospital with a child wrapped up like a blind burrito we were laughing hysterically knowing what we must look like to everyone else. Today, we merely walk in the elevator like everyone else whereupon Ewan and Vaughn push all the buttons they can and THEY giggle hysterically. Oh how amazing the human nervous system can be—amazing and plastic. Sometimes you have the ability to sit back and marvel at just how organized a disorganized sensory system can become. A transformation that can take your breath away and give you hope like nothing else on earth.

Ewan’s first IEP meeting involved trying to test a mostly non-verbal child who rarely sat still. Ewan’s first IEP meeting involved a lot of questions about what he could and couldn’t do and where he’d be in a few years. Today the meetings are about how to get Ewan to stop talking, to say things appropriately rather than having no speech at all. Today the meetings are about how successful Ewan is in math and how he’s learned to read and to love doing it. Today the meetings are not about questions of what Ewan can understand but rather how can we help him truly integrate into society and into the world.

So in the words of the immortal Dr. Seuss, congratulations Ewan, Today is your day, you’re off to great places, you’re off and away! You have brains in your head and shoes on your feet. You can steer yourself in any direction you choose. You’re on your own and you know what you know and YOU are the guy who’ll decide where to go (which may or may not include an elevator)!!

Metamorphosis

2010-09-03T15:38:00.002-05:00

What is it about change that puts fear in our hearts and ice in our veins? People often think that this small part of life really shouldn’t be such a big deal, that we should be able to adapt to the situation no matter who, what, when, or where right? Yet change is something we all struggle with, children and adults alike—neurotypical or special needs. For all of us, change makes us hold our breath and pray for faith as we step into the abyss.

Often, I am asked to give a little insight into why little Jack and little Sally are flipping out at home or at school. And more often than not, that Mount St. Helens eruption of emotion has to do with change. Changes in people, places, schedules, green cups replaced by blue cups, fruit cocktail substituted for grapes, and Spongebob swapped for Fan Boy and Chum Chum—all elicit the same terror provoking response. Small changes in life create a world of instability and unpredictability—a world that can quickly spiral out of control for the person who relies on the comfort of a quiescent and stationary life.

So why the sweeping fear and crushing trepidation over such minor adjustments to life?

Try this…imagine for just one moment that Scotty just beamed you up and planted you in another country. You don’t speak the language, you don’t understand the customs, and you have no clue where the bathrooms are. You don’t know what the food tastes like, in fact, you’re not even sure what’s edible and what’s not. You are alone in this alien territory and you have no interpreter, no guidebook, and no Anthony Bourdain to help you along. You wonder amidst the stink and stench of the unknown and are left drowning in the noise and static. You don’t know when you’ll eat next, where you’ll sleep tonight, and where you’ll wake up tomorrow. Fight or flight becomes your life and finding normal never seems further away than at that point.

That’s what life can be like for someone with autism.

When your brain has a difficult time with prediction, it’s hard to imagine what the day will be like when it starts off on the wrong foot. The entire day can be shot to hell because the train got off track from the beginning—because you have to live with a prefrontal lobe that doesn’t know how to problem solve around this new hurdle.

You know how to live through that above ‘beam me up Scotty’ scenario? You wait, and you watch, and you look for patterns among the natives. Eventually you learn what is food and where to buy it. Along the way you find the bathrooms. At some point, you pick up patterns in the babble and find yourself speaking a foreign language. Give yourself enough time waiting and watching, and you’ll find out that the thumbs up sign is obscene in Bangladesh. At some point, you become an Anthropologist on Mars and that’s what life is like for the autistic.

Yet our children’s lives cannot be so rigid and inflexibly scheduled every second of the day that they never have the ability to stretch that prefrontal muscle. How can you learn to adjust to change, if change is never allowed to come to you? Spontaneity has a place in all our lives, even in the life of the autistic. Leave room for the question mark on the schedule, leave room to shake things up a bit, take time to turn left instead of right, and find a way to learn how to handle change rather than just accepting life at a standstill. There is a balance to life, even for the autistic—where we must strive to create a safe but not stagnant life.

This fear of change isn’t just the stuff of childhood—a great many of my adult friends are on the verge of a panic attack at the thought of me moving 1200 miles away to live the life of a beach bum (ahem Cheri Fraker). Change brings us all to our knees and we all long for the good ole days when times were better and life seemed easier. Yet without change, life becomes stagnant, and stagnation leads to a kind of cognitive inertia because we learn to accept the status quo. Change produces a frenzy of thought and creativity—change pushes us into an awareness once ignored and leads us to a future that is wide open.

“For if in any manner we can stimulate this instinct, new passages are opened for us into nature, the mind flows into and through things hardest and highest, and the metamorphosis is possible.” ~Ralph Waldo Emerson

Nature's Playground

2010-08-04T17:05:00.003-05:00

“Every time we walk along a beach some ancient urge disturbs us so that we find ourselves shedding shoes and garments or scavenging among seaweed and whitened timbers like the homesick refugees of a long war.” ~Loren Eiseley

This last week in Florida spent in the sun and the sea and the water has me thinking. In fact, this whole summer has had me thinking about the child with autism and the natural world. My latest idea with Adventure Club and getting children with autism and their families doing activities outside has left me with a renewed sense of what nature provides everyone, even those of us who might see the world a little bit differently. The world of dirt, bugs, leaves, wind and water has awakened some intrinsic piece of my conscience. Something that once awakened continues to exert a gravitational force upon you—day in and day out begging to be heard.

I’ve come to see that the clinic cannot hold a candle to that of nature’s playground. Therapy and gadgets and all the equipment in the world pales in comparison to that which is provided by Mother Nature. All the body socks and swings and Theratogs are found lacking and wanting next to the allure of the sea. The rhythmic push and pull of the waves as they crash into the joints and tendons and muscles cannot be achieved through joint compression and weighted vests. There truly is no greater proprioceptive activity than standing amidst the tide. There is no greater tactile activity than walking along the beach bombarded with sand and sea, toes sinking and embraced by the shore. The calming effect of the rhythmicity of an oceanic symphony cannot be replicated by anything in today’s wide array of technological gadgets. Wind and water, cling to the skin and calm the mind in a way that sensory equipment cannot hope to replicate.

Today we expect to recreate the natural world in spandex and swings and boxes filled with gadgets and bean bags. Yet these things will never be connected to us in ways that the natural world is. As a child, I spent the majority of my time outside on the back of a horse. When I was younger I was surrounded by fields and animals and covered in dirt from head to toe. Much like my youngest child, I was outside from the time I got up till the time I went to bed. The outside called to me as it calls to my youngest child—with the allure of the sweetest siren song. To torture him, is to keep him bound within these walls of home. His home is out there, amongst the trees and under the wide, blue sky—not here in the safety of the living room. His cathedral is not a church building but the wide open spaces of the world.

This past week I’ve seen a change in Ewan—he has tuned in to that which his brother has heard all along. He became the child who needed to be outside more often than he needed the security of the bedroom and the Wii or the iPod. He became the child who relaxed into the liquid caress of the pool as he floated effortlessly from one end to the other. He found himself interconnected in a wider world, to find something far more substantial than the gadgets and things he so often obsesses over. I am convinced more than ever after this summer that our children long for something more, something greater than what can be found in any catalog or dispensed in any 60 minute session. The more we push these children towards hours and days fixed behind a table or a desk, the more they push back—the more they require to simply make it through the day. We seek to create synthetic replicas of what exists naturally right outside the door. Stop rushing from therapy to therapy, day after day, year after year and instead, find your inner Transcendentalist.

“I believe that there is a subtle magnetism in Nature, which, if we unconsciously yield to it, will direct us aright.” ~Henry David Thoreau

"Live in the sunshine, swim the sea, drink the wild air." ~Ralph Waldo Emerson

“I remember a hundred lovely lakes, and recall the fragrant breath of pine and fir and cedar and poplar trees. The trail has strung upon it, as upon a thread of silk, opalescent dawns and saffron sunsets. It has given me blessed release from care and worry and the troubled thinking of our modern day. It has been a return to the primitive and the peaceful. Whenever the pressure of our complex city life thins my blood and benumbs my brain, I seek relief in the trail; and when I hear the coyote wailing to the yellow dawn, my cares fall from me - I am happy.” ~Hamlin Garland

“I go to nature to be soothed and healed, and to have my senses put in order.” ~John Burroughs

The Adventure

2010-08-04T17:05:00.001-05:00

Our first family vacation is over and we are slowly getting into the routine of everyday life back home. As I look back over the past week I am pleasantly surprised by the turn of events. As I mentioned in the last note, we decided after the years of scripting and social stories and prepping for every moment in life to let it all go and just wing it. I was prepared for meltdowns, anxiety attacks, sensory overload, headaches, and more. Interestingly enough, the only one to experience all that was me as we drove through Atlanta. Ewan far exceeded my expectations in learning how to go with the flow of life—but then again, he always has.

Since a good portion of our trip was spent in or near the water I made the boys get swimming lessons before we left. All through the lessons Vaughn was the one who most resembled a future Michael Phelps. Ewan was hesitant and much slower to warm up to the mechanics of swimming. I imagined Ewan spending much of the day playing Super Mario in the house while the rest of us lounged around the pool. I imagined we would have to pry Ewan away from the safety and security of the inside to explore the wonderful world of island life. But what we imagine is always a far cry from the reality.

In reality, Ewan turned out to be the better swimmer, the one who would’ve spent every waking moment in the water if we’d let him, the one who was drawn to the ocean like a moth to the flame. By the time we left, Ewan was swimming the length of the pool. By the time we left, Ewan sat patiently waiting for the manatees to swim up to the dock. By the time we left, Ewan was indeed a different child.

This was a child who went to Disney World without a social story, without a schedule, without any planning. We decided to surprise the boys and let them in on the secret as we pulled into the parking lot. This was a child who waited in line with bated breath for The Haunted Mansion and The Big Thunder Mountain Railroad. This was a child who handled the crowds, the smells, the overwhelming sights, and sounds of Disney better than his mother did. I’ll never forget coming around the loop on the Thunder Mountain ride just as fireworks were going off over the park and I know Ewan won’t either.

Throughout the vacation—from swimming in the ocean to frolicking in the pool to looking for gators to eating at a famous diner at midnight—Ewan approached the unknown with happiness and joy. I saw Ewan escape the serious drill sergeant demeanor he now wears to become the child who delights in every new wonder, excited and euphoric over the smallest of details. He jumped and flapped and giggled his way through every new experience. In some ways, during this vacation Ewan has never 'looked' more autistic to the passerby with all the flapping and jumping. And yet in other ways he has never handled so much at once independently with so much grace and ease.

One moment that will stand out in my mind was at the Marietta Diner, a place we happened to roll into around 11:30 at night as we drove back home. It was crowded and food was piling up all over the table as Ewan took his fingers and traced around my arms and my face. Again and again he traced over me, looking me in the eye as he said, “The worst part about this vacation is the end. I don’t like leaving.” Which is why we’ll be going back, sooner rather than later…Ewan has found his inner traveler and a love of the ocean that will last him a lifetime. The waves of the ocean and the laps in the pool may do far more for Ewan than any 50 minute therapy session ever has.

"When anxious, uneasy and bad thoughts come, I go to the sea, and the sea drowns them out with its great wide sounds, cleanses me with its noise, and imposes a rhythm upon everything in me that is bewildered and confused." ~Rilke

A long overdue vacation...

2010-08-04T17:04:00.003-05:00

The family vacation—one of the most needed and often one of the most forgotten aspects to life when raising a child with autism. Needed, because let’s face it, autism takes more than you have to give every single day. Forgotten, because let’s face it, there’s no more daunting task than traveling 1200 miles away from the safety of home sleeping in strange beds, eating strange foods, and seeing new places with a child who thrives in the tedium of a cloistered life. It’s easier not to take a vacation, then to need a vacation from your vacation. For 8 years I have avoided leaving the security of our routine so that neither Ewan nor I would be forced outside the comfort zone. Until now that is.

My sister recently moved to Florida thus forcing Ewan and I to cross a few boundaries and to find another part of ourselves—a part that loved the water, that soaked up the heat and the sun and sea salt, that enjoyed waking up in a new state—both physically and psychologically speaking.

Being that we live in Illinois and the trip was going to be an 18 hour marathon of wits and patience and the kind of quick thinking creativity that keeps the family from killing each other in the car—I knew that this was a trip that would require a host of gadgets that was second only to the Radio Shack inventory. Yet at the same time, I felt that after 8 years of therapy, 8 years of social stories, 8 years of planning every aspect of existence out that now was the time to stretch the abilities of Ewan’s frontal lobe. Now was the time to expect more out of him. So I winged it.

We talked about where we were going, how long it would take to get there, who we would see, and what we would do and we left it at that. And the only repetitive questioning came in the form of the prototypical backseat boredom of, “Are we there yet?” We had Gameboys, iPods, movies, books, coloring supplies, plush pillows and fleece blankets, we had favorite snacks and drinks galore, and we had 18 hours to use each and every single one of them. One of the best last minute sanity savers was a subscription to Audible on the iPod and the purchase of the Diary of a Wimpy Kid books.

However, we had the ‘Brother’ factor to contend with. The ‘Brother’ Factor goes something like this: 2 boys + 5 square feet of backseat space = Sibling Guerilla Warfare. The only thing that could cancel out this equation was the threat of not stopping at the Castillo de San Marcos--the site of a Ghost Adventures episode--one of Ewan's more interesting obsessions lately. Somehow though, we were able to make it 17 hours and 30 minutes before the hostilities began and fortunately my husband and I only needed to wait a mere 35 minutes before shoving them into their Aunt’s new pool.

Had Ewan been younger or at a different phase in his life we would have been armed with Social Stories and PECS, and I would have spent hours programming the Dynavox to have every imaginable way of saying ‘Are we there yet?” Had Ewan been less focused on seeing his favorite people on the planet, I would have scoured the internet for photos of every rest area and hotel in the Great Smoky Mountains and on the entire eastern seaboard. But sometimes you have to know when all the hours of therapy and all the hard won goals and benchmarks have paid off and you can just be with the child sitting before you. The child who can blithely walk into a new restaurant and say ‘No thank you, I’ve already had a Pop-Tart” to the waitress without batting an eyelash and without proceeding into full meltdown mode when they sell Sierra Mist instead of Sprite (something I have yet to master when it’s Diet Pepsi versus Diet Coke). The child who walks into his hotel room and immediately demands to know where the smoke detectors are because the ones at home are usually placed directly above the doorway. The child who says, ‘This is the life,’ as he props his feet up on a new bed, in a strange town, and in a slightly smelly hotel room.

Ewan has spent the early part of this vacation suspended in various forms of aquatic activity. We have had to pry him from the pool after 8 hours of swimming, floating, and splashing. We have heard him say, “Is it time to leave the ocean yet?” as he runs back in to catch ‘one more wave’. The boy has turned into the evolutionary missing link who has ended up spending more time in the water rather than out of it.

This long overdue vacation has taught me many things: one of which is to laminate a few maps for the kids and let them draw the route as we go. The other is that we CAN do this successfully and gracefully and with all our hair. We are already planning our next car trip out to Yellowstone because as Ewan so eloquently stated, “Florida has everything but volcanoes mom.”

How to change a life

2010-08-04T17:04:00.001-05:00

There are moments in your life when you have a singular opportunity to make ripples into waves and waves into true and lasting change. Last night, was one of these moments.

A friend of mine, a fellow autism mom, organized a musical festival in her community to raise awareness and money for autism programming in our corner of the Midwestern cornfields. And of course living in the Midwest, means living with some seriously weird weather. So while our wonderfully organized outdoor music festival turned into a scene from a Jim Cantore Disaster special on The Weather Channel, we were lucky to have an indoor venue to switch to. Our organizer and glue holding us together, Cassie Wheeler, handled the gale force winds with grace and optimism. And while Ewan was lecturing me on the basis of cloud rotation as we huddled in the mall, the night turned around and even the generally music hating Ewan was spotted on the dance floor.

Nights like last night often seem like just a drop in the bucket in relation to the depth and magnitude of the issue at hand, especially with something as complex and common as autism. Yet there’s a reason why the proverb ‘A journey of a thousand miles begins with a single step,’ is a timeless statement. Changing the world we live in to make room for our autistic brethren begins with a single night. Changing the way we see autism begins with just a single connection to a child. Changing the tone we speak the name autism begins with one breath.

For me, I made a connection with a child that I hadn’t yet found a way to forge. Last night, Cassie’s son Elijah found his way to my lap where he sang his way into my heart. This often elusive and remote child found a way to communicate through his eyes, his song, and his soul. A moment I will carry with me and think of when I see the child who seems unreachable, the problem seems unsolvable, the issue too complex.

Find your moment today. Make that connection you thought you couldn't. See autism in a whole new light.

Thank you Cassie for making our moment work. Thank you Vivian for raising some money for a great cause. Thank you Laura and Matthew for creating the coolest games for our children (and someday I want my own Plinko game). Thank you Shelly, Brian, Teresa, Jeff, Trina, and Julie for getting out and supporting the whole enchilada. And thank you Kenny for sharing your wife while she threw herself into making the event so successful. Thank you to everyone who braved the storms and took a moment to put autism first.

A Moment of Clarity

2010-08-04T17:03:00.000-05:00

Today is my son’s 8th birthday. Tonight at 9:18 he will officially turn 8 and a whole new world of 3rd grade and life opens up. I remember thinking 8 years ago to the day, that this child was different. I didn’t know just how different he was or why that he was, I only knew that this child was special.

I remember in the seconds after he was born, he looked at the world with eyes as deep and mysterious as the furthest reaches of space. He looked around and he reached out to grasp the nurse’s stethoscope and the doctor’s nametag. He didn’t just blindly reach out and accidentally catch—he looked, he saw, and he wanted. To this day, Ewan is still very much the child who looks at the world, sees something that I often miss, and finds a way to get what he wants and what he needs.

I remember in the hours and days after Ewan was born, his eyes stayed open as he endlessly drank in the sights and sounds of this new world. He never slept. And I don’t mean that in a babies don’t sleep kind of way. He couldn’t stop seeing, couldn’t stop searching, couldn’t look away from the blinds in the bedroom. They pulled him in with a siren song that only he could hear. Today his siren song has become science and technology—it calls to him in a way that I may never fully understand. Then I would have said he was uncomfortable in his own skin, today I would say he is learning the inner and outer boundaries of his self and of his soul. Today I would say he knows himself better than anyone.

I remember in the days and months after Ewan was born, that he often pulled away from my touch. Stiffened in response to a mother’s cradling and fought against the invasive intimacy of breastfeeding. The slightest of brushes against his skin brought forth a moment of shock. The silence was never silent enough. The barest of whispers might elicit a startling response. Today a hug is not always given freely. Today the cacophony of the world can still be too much. Yet he learns to walk through life in ways that he can handle and he is learning to cope.

I remember in the months and years after Ewan was born, that the world of food and nourishment was far out of reach. Then the very idea of food was overwhelming and frightening. The joy of eating was not something he would experience for years to come. Every bite was associated with a deep and terrible suffering. It would be years before he could approach the table with trust and anticipation. Today, his relationship to the world of food and eating has grown leaps and bounds yet he may never reach out to the table for comfort. Yet he continues to reach with an inner strength and determination that many will never know or understand.

I remember in the early years, waiting for words to come—waiting with bated breath to hear the thoughts running through his mind a million miles an hour. Waiting to touch his mind through the jumble of verbs and adjectives and the full breadth of linguistical magic just on the tip of his tongue. The anticipation grew to an alarming distress when the world of words and sentences seemed out of reach. Today, the years of augmentative communication and speech therapy have given birth to a child’s thoughts so pure and honest they are proclaimed to the world on a daily ‘Ewanism’ basis. The depth of his understanding gives profound meaning to my life as I eagerly await the next ‘ism’.

Those early hours, days, months, and years left me confused, scared, out of my element, and pushed into the deep end of the ocean. Yet I learned to stop swimming against the current, let myself go, and embraced his world as much as I did my own. In those early days, every single day I would dare to dream in the darkest of the night of what my son might become—what life might hold for him. And I can say he has far surpassed all my expectations and dreams. He is Ewan. And that, is enough.

National Eosinophilic Awareness Week

2010-05-17T17:46:00.000-05:00

National Eosinophilic Awareness Week

A Universal System of Care

2010-05-11T15:52:00.002-05:00

Autism is one of the most complex issues we face in society today. Autism is not just one thing. As a child once said to me, “Autism is big.” He was right, autism really is big. It is complex and it is pervasive. It can be difficult to understand and it can be hard to know what to do, when to do it, and how to help.

One thing alone will not help this child. It often takes many things, many people, and many ideas to improve this child or adult’s life. My sole goal in life is to improve the quality of my son’s life—in all things and in all places and in all ways. Every single day I ask the question, “Have I made his life better?” And every single day, I push to make the world more accessible, to help the world understand him better, and to give him the tools he needs to be whatever it is he wants to be and do in life. Every single day, I look at my son's life and think, “How can I challenge the way the world views autism?”

One of the ways we change the way we view autism is to provide comprehensive care to the person with autism. Too often, we think of autism as merely a speech and language issue. Or a behavioral issue. Or a sensory issue. And we fail to see just how ‘big’ autism really is. Autism is not just a language barrier. It is not just a behavioral program waiting to happen. It is not just about a steady sensory diet of balls, trampolines, and swings. It is all parts of your life and in all things you do.

If we truly expect to improve the quality of this person’s life, we must move beyond our concept of care of providing only therapy.

We need to think better medical care. Everything can’t be autism related. Statistically speaking, this person is going to have OTHER problems in life. Headaches, dental problems, food allergies, diabetes, toe jam, and hang nails are going to happen to the person with autism. And if we fail to treat these issues and assume that it’s ‘just autism’ we have failed this person. We need to treat the whole person all of the time. And indeed this can be a Herculean effort when the child or adult doesn’t communicate pain or distress in a typical manner. It takes a level of observation that goes above and beyond, ‘How are you today?” If we continually assume that everything is autism or that nothing can be done to help, we do a great disservice to the person with autism.

We need to think comprehensive approaches that consider the person with autism is dealing with more anxiety and stress than anyone else on the planet (minus maybe those in a war torn and ravaged country). These are individuals that can spend the majority of their day, every single day, in a state of fight or flight. Stress can take its toll on your life and your health in ways that most people find unimaginable until they’ve lived it. When you experience that moment of fight or flight, the body is prepared for dramatic and explosive action. And in that moment, you really don’t feel like having a sandwich. Most of our children and adults with autism are dealing with altered states of hunger, sleep, alertness, and concentration because the body and mind are constantly pushed to the edge. All of which brings us back to providing better medical care for this child and for this adult. We must care for the whole individual—all the time. We must also care for the autistic person’s support system. If caregivers, friends, and family members are also pushed to the edge, we must work to bring them back. If we continually put out fires without thinking of the bigger picture we do a great disservice to the person with autism.

We need to think life skills. Yes, the four letter word and the 400 pound elephant in the room. LIFE skills are needed to function in a world that requires us to constantly work on Maslow’s hierarchy of needs. Our physiological states of being and our sense of safety provide the foundation to our lives and if we lack these basic, fundamental human needs our lives crumble around us. One can be at the top of the class and graduate from an Ivy League college and still need to learn life skills. It doesn’t matter where you fall on the spectrum, those fundamental human needs will always be required to have an improved quality of life. We need to think the entire spectrum of the life cycle. Too often we think of only the autistic child, without giving thought to what this person will need as this child becomes an adult. The three year old becomes the 18 year old, becomes the 34 year old, becomes the 42 year old, and becomes the 63 year old. If we continually ignore these needs, we do a great disservice to the person with autism.

We need to think about the words and phrases we use when discussing autism or the person with autism. If we continue to frame this person’s life in a negative connotation, we fail this person miserably. It is IMPOSSIBLE to develop positive self-esteem when others continue to say what you cannot do. It is IMPOSSIBLE to believe in yourself when no one else does. It is IMPOSSIBLE to dream about a future when everyone tells you that you have none. It is IMPOSSIBLE to find faith in yourself when all the world has given you up as a lost cause. It is IMPOSSIBLE to have confidence and self-respect when all the world says you are a shell of a human being. If we continue to frame the context of autism as a plague on mankind, we do a great disservice to the person with autism.

We need to think beyond social scripting, prompting, and generic attempts at socialization. Our children and adults need a sense of belonging. Belonging to something greater than themselves, greater than just their classroom, greater than just their family. People with autism need a sense of being a part of the community rather than continually pushed to the fringes. We need to realize that leaving the person with autism on the fringes of the world creates a very lonely place to live. We need to realize that depression is real and it is serious. Far too many children and adults with autism commit suicide every year because they have been abandoned to the ends of the world rather than being embraced by the center of humanity. If we continue to push away the person with autism, we do a great disservice to this child and to this adult.

Autism advocacy cannot only happen in April. Our level of awareness and understanding cannot be left to 30 days in April. It’s not just about explaining what autism is and how to recognize it. It is about removing prejudices and barriers. Autism is not just a clinical definition in the DSM-IV. Autism is someone’s life and it’s time to understand how to be a part of that life rather than an outsider looking in. Our children and adults with autism are not petri dishes and experiments that we can voyeuristically examine from the outside. Nothing about them, without them. It’s not what WE think we should be doing to improve the autistic person’s life—it’s about what the person with autism believes we should be doing. If we fail to listen to the person with autism, we do a great disservice to this child and to this adult.

It is time to move beyond speech therapy. It is time to move beyond behavioral programs. It is time to move beyond sensory integration. It is time to move beyond educational methods. It’s time to create a new world for the autistic individual. Think about what you can do right now to create a new world and a better life. A world where the quality of life is continually pushed forward. A world where the person with autism is embraced. A world of respect and understanding 365 days a year, every single year. A world of possibility.

The Temple Phenomenon

2010-05-11T15:51:00.002-05:00

If you are at all invested in the world of autism, chances are you've heard of Temple Grandin. She is an amazing person, woman, scientist, and writer. Temple continues to break down barriers for women and those with autism in all the things that she does. The new HBO documentary titled, Temple Grandin, is quite honestly one of the best portrayals I've ever seen and if Clare Danes doesn't win an Oscar, I'm starting a rebellion on the doorstep of the Academy.

Having said that, we all fall prey to the Temple Phenomenon. The Temple Phenomenon is something like this--we read about Temple's life, we see what she can do and how she thinks, and we fall in love with her descriptions and beliefs about autism and we start to think that all autistic individuals ARE exactly like her and THINK exactly like her. Just a few days ago, someone quoted one of Temple's books and said to me, "Well Temple Grandin does this and this is what she said about that." We start to think that if it worked for Temple, by golly it should work for every autistic person.

The thing is, all people with autism are different. Sometimes excruciatingly so. Temple is Temple. Temple is not the protoypical autistic individual--there is no such thing. People with autism are as varied and as unique as the snowflakes that fall from the sky. My son is not your son, your daughter is not the girl that sits next to you in church, your brother is not that guy I see in the store. They are all unique and if we let the Temple Phenomenon take over the way we look at the autistic child or adult we do a great disservice to all those with autism.

Temple is a highly visual thinker and while a good majority of people with autism may also be visual thinkers--it doesn't make them all that way. If we fall into the 'It works for Temple' trap, we are taking the easy way out. If we fall into the 'Temple can do it, why can't you?' trap, we fail to appreciate the individual in front of us.

Temple is Temple. Use what Temple has brought out into the light of day and learn from it but then apply it to the unique person in front of you. Think how this child is this child and not anyone else.

When I think of Temple Grandin and her life, I tend to think more of her ability to break down barriers as a woman in a predominantly male oriented field (certainly when she was in graduate school and just beginning in the field). I think of her as a self-assured and competent woman, who also happens to be autistic. There are Temple Grandins all around you, adults with autism who continue to defy the odds, who continue to push the boundaries of possibility, and who stand up and fight for an improved quality of life for all those with autism.

There's a Temple Grandin in your community, in your school, in your church, in your classroom, and maybe right next to you who is doing the very same thing albeit in their own unique way. The Temple Grandin in your community may be quietly challenging stereotypes and discreetly opening doors for future generations. The Temple Grandin in your community may not have published a series of books or have an award winning (see how I threw that hopeful statement in there) documentary about their life but they too have patiently and unassumingly pushed toward a world of tolerance and acceptance and knowledge.

Think like an autistic

2010-05-11T15:49:00.001-05:00

[Sang to the tune of Walk like an Egyptian] Think like an autistic….

Most of the time I’m trying to either see the world from my son’s standpoint or another child with autism. Most of the time someone is asking me why does he do that or why does she act like that or why doesn’t he want to do this? Most of the time, I spend my day thinking like an autistic.

Now, I’m a parent of a child with autism so guess what—I’ve got traits. I’ve got some inner autistic to tap into to some degree. I’ll never fully understand what my son or another child is feeling, experiencing, thinking, or wanting because they are different people with different minds and different experiences. But that doesn’t stop me from trying to understand life from the autistic perspective.

This past month I have visited several schools and talked to children of all ages about what it means to be autistic and the one theme that has emerged over and over is this: we have more similarities than differences. If we understand the differences and the reasoning behind those and focus on the similarities we begin to bridge a gap that has been far too big for far too long.

We have all felt alone and pushed to the fringes at least once in our lives.

We have all had trouble finding the right words at the right time.

We are all really good at some things and really crappy at others.

We have all been depressed and think we can’t do anything right.

We have all been misunderstood at some point in our life.

We have all said the wrong thing at the wrong time.

We have all felt awkward and out of place.

We all have something that we really love.

We have all been bullied and picked on.

We all have things that drive us crazy.

We all cherish that quiet time alone.

We all learn in a different way.

We are all people.

By no means, do I want to diminish the struggle that individuals with autism face every single day--these are all very significant challenges to the autistic person. Yet we need to realize that people with autism are not so alien, are not so far away, are not so different. Value these similarities, embrace the similarities, reach out to the autism community and bridge the gap. Put your heads together in making a world that values people of all types, of all abilities, of all types of thinking and being. Step outside yourself and see life from another perspective. Although you may never truly understand what life is like to be a person with autism, you can still try—you can still find some common ground. Think like an autistic more often and value life in all its forms and beauty.

It's a therapy life

2010-05-11T15:20:00.002-05:00

From the time my son was 14 months of age, therapists have been a part of my life and his life. Some of Ewan’s therapists have become close friends of mine. Some of Ewan’s therapists are like family now. We have been blessed to work with and learn from some of the greatest therapists to walk the earth. When your life is about therapy you're bound to make some lasting relationships along the way. Every month of his life for the past 7 years he has had some form of therapy taking up permanent space in our lives. Occupational therapy, speech and language therapy, physical therapy, developmental therapy, augmentative and alternative communication based therapy, play therapy, therapy, therapy, therapy.

In some ways, our lives become medicalized and the constant rush from clinic to clinic and from doctor to doctor can be overwhelmingly alien to our friends and families who may miss the importance of 50 minutes of speech here and 60 minutes of OT there. There is a level of urgency surrounding the child with autism that is rarely seen outside medical emergencies and life threatening illnesses.

There is a sense of urgency in providing this child with as many tools to live in this neurotypical world as possible. And in reality, this is all therapy is. Therapy provides tools, it provides coping mechanisms, it teaches a child who thinks differently ways to navigate the neurotypical world. Therapy is a map in getting from here to there. It is a compass, it is a lifeline, it is sometimes a saving grace. Yet it is also a burden.

Yes, a burden. Therapy can be exhausting—for both the child with autism and the caregiver. I watched Ewan struggle through an evaluation the other day on syntactic and pragmatic language—the mother of all mountains for this boy—the Mt. Everest of his life. He was being evaluated on nonliteral language when his frustration level hit the stratosphere. Therapy is hard and it is exhausting. It pushes you in ways that you may not be ready for. It’s like jumping into a marathon without ever having run more than 500 feet in your life. It’s like a 50 minute trigonometry exam three times a week. It takes concentration and effort that most adults fail to appreciate. I’ve said it before and I’ll say it again—no one works harder than the child in therapy.

As necessary as therapy is, it can’t be the ONLY thing in this child’s life. If all we do is run from therapy session to therapy session and drill our children on what to say and how to say it and when to say it, we do them a great disservice. A child’s life is about play. And while therapy can be play based it is still not play. And while therapy can give a child a great many tools, it doesn’t often allow them to practice with these tools. The clinic is not the community. The clinic is predictable and safe—the community and the outside is the great unknown and generalization becomes the last great hurdle.

If we want to increase a child’s quality of life while giving him or her an ability to flex their new found coping muscles we must branch out, we must find new avenues to develop, and we must encourage interactions with peers and the public. Life cannot be lived in a bubble and autism is not an island. What our children need most after the countless hours of therapy is both downtime and creativity.

First comes therapy and then comes life.

Life must be a balance between the medical and educational needs and all that remains. The things like art and music and dance and drama and exploration and socialization are those things beyond therapy that we should all be reaching for. These are the places and activities where children will learn to flex those executive functioning strategies and learn to apply those social scripts and learn to navigate those sensory minefields. Branch out. Find the balance between therapy and life. Find those things that increase that quality of life because if life is only lived in a therapy room, it’s not much of a life at all.

New Video

2010-05-03T11:30:00.000-05:00

Create your own video slideshow at animoto.com.

Upcoming Webinars

2010-04-25T08:38:00.004-05:00

Link to all The Autism Life webinars:
http://www.instantpresenter.com/theautismlife

Webinar One:
Part I of Journey Through the Autistic Mind Webinar
April 29th, 2010
4:00-6:00pm

This workshop delves into the mind of the autistic child. Rather than providing a ‘tool’ or ‘strategy’ to working with autistic children, this workshop seeks to challenge the way you think about autism. Through increased understanding and new perspectives, participants will be better able to implement and problem-solve through difficult situations.

We will cover major theories and research into the genetics of autism, prevalence and incidence, executive dysfunction, difficulties with self-regulation, amygdala differences, mirror neurons, synaptic ‘pruning’ differences, and difficulties with facial processing. Understanding the depth and breadth of the disorder is key to helping those with autism. Throughout the workshop we will not only discuss current theories and research into the mind of the autistic, but seek to experience the world from their perspective.

This is a webinar through Instant Presenter and you must have a PayPal account for registration. The cost of Part I is $25 for the live version and $20 for the recorded version. This is the registration link: http://www.instantpresenter.com/PIID=EE53DC8182

Questions? Email Alicia Hart at aliciahart@consolidated.net

Webinar Two:
The Picky Eater at Home Webinar

April 30th, 2010
9:00am to 11:00am

The Picky Eating Child at Home workshop focuses on living with and feeding the picky eating child. This workshop applies to ALL picky eaters, typically developing or special needs situations. Topics such as typical development, special needs children, food allergies, common medical problems, referrals, description of treatment methodologies, food education in the home, and fun activities for children and families to encourage healthier and broader food choices.

The live webinar is $25.00 and the recorded version is $20. You must follow this link to register and you must have a PayPal account: http://www.instantpresenter.com/PIID=EE53DC8583

I Speak Autism T-shirts

2010-04-20T15:58:00.001-05:00

For anyone out there wanting to order one of The Autism Life.com t-shirts that says "I Speak Autism Do You?" please send your size preference, short or long sleeve, contact information and address to theautismlife@gmail.com

Thank You!

Alicia

Hope comes in small packages

2010-04-20T15:57:00.001-05:00

Yesterday was a pretty eventful day around here. Up early as the dog and cat raced across my face at 6:30am. No rest for the weary in this house. First on the list was the Festival of the Young Child—think a thousand birthday parties rolled into one—think a thousand wild and crazy toddlers and preschoolers—think lots of Advil. Seriously though, Festival of the Young Child is a great chance to meet other people, find resources, and think about the bigger picture of what it means to build a community—one that is inclusive of all types of children with all types of needs and all types of abilities.

I met families I’d never laid eyes on before who are raising children with autism. I met children with autism that I never knew existed. I met a young man with Asperger’s whose first words were, “I have autism!” Autism is not rare. Autism is everywhere, if you open your eyes to see it. Autism creates friends where there were none. Autism creates hope where none existed. Autism strengthens our communities where they had been splitting at the seams before.

Last night my husband pulled together a music fest to raise money for my Adventure Club idea. Despite two deaths and a deadline of only three weeks, my husband pulled it off—maybe with a few more gray hairs, but he pulled it off. In that little bar, a wider community of acceptance and understanding was created. In all the conversations I had about autism last night each one led back to the same theme: we have more in common with autistic individuals than differences. Every person had a story about someone they knew, someone the loved, someone they met, someone they hoped to meet. Every person had a connection to autism in some small way. Even being there last night and supporting the very idea of it was enough to strengthen and build a world I want my son to be in.

It’s not often that we get to do great things with our lives, our actions, and our thoughts. Last night, I saw many people doing great things just by being there. Just by walking in the door. Most people there had no idea what kind of an impact they were having on the life of a person with autism—they merely came to enjoy the music or the night out. Most people had no idea what it meant to the parents who were there. Most people there had no idea how one small ripple can create such monumental change.

Last night, people were changing lives without even knowing it.

It’s not always the great things that I look for in my fellow community members, friends, and families that I know. I’m looking for hope in small packages. And last night I found plenty of that. I can never thank my husband enough for jumping through hoops to make last night possible. I’ll never be able to thank Lucas Thomas, Kylie Knoop, Mike Knoop, David Thill, Sarah Jean Bresnahan, Jason Ward, Tammie McElwee, Brent and Angela Byrd, Dwight Walters, Scott Choplinski, Paul Heckel, Ryan Morrison, and the entire Staff Blues Band enough for everything they did to support AutJam. I’ll never be able to thank all those that came out for great music and an even greater cause. Just know that what you do in the few, small hours and deeds of your life create change where there was once stagnation, create possibility where there was once impossibility, and create a better world for all people with autism.

English isn't the first language

2010-04-20T15:56:00.004-05:00

So many of our children with autism struggle with language. In fact, in order to be diagnosed with autism there must be some sort of communication issue. But this can run the gamut from no language at all, to the most verbal of verbals who speaks better than most professors do. The difficult part about the communication issue is not whether or not language is present—but how the child with autism uses language. As I’ve watched Ewan grow and develop and move from little language to predominantly echolalia to more sophisticated and complex language, I’ve always thought English was never his first language.

In fact, I’m not even sure words were a part of his first language.

He speaks a language that is far more elemental and fundamental to humanity—a wordless language born of the senses and the depths of the human mind unknown but to a few of us.

It’s hard to speak this language, because it’s not something you say—it’s something you feel, something you experience. It’s not a language of the hands as in sign. It’s not a language made of complex syntax and grammar. It’s not a language of sentences and fragments and adjectives. It’s a language of feeling. It’s a language of elation, of despair, of confusion, of love. It’s a language of the wind on your skin, the water under your fingertips, the sun in your hair, and of lights and shadows. It's a language of obsessions.

Yet, for those in my neck of the woods, English is the language of the natives. English is spoken here, is read here, and is heard here. So a bridge must be built. The bridge from the language of the autistic to the language of the neurotypical.

Often, I meet a child who has never been given the opportunity to cross this bridge. The language bridge was never offered.

Too often, I hear the words, ‘Not a good candidate’ when considering higher forms of augmentative communication systems for the child with autism. Too often, we get bogged down in those clinical and educational minefields that make us believe that some things are just beyond this child. Yet, if you never try it, you’ll never know for sure. There's no litmus test to say who should be offered that opportunity and who shouldn't. These children continue to defy expectations every single day.

I remember when Ewan was very young. The language bridge was slowly built plank by plank. Sign language gave us a few steps toward the middle. PECS gave us a few more. But it wasn’t until Ewan was given a high tech communication system that he finally met me in the middle. The Dynavox was just the bridge we needed to speak each other’s language. I made sure his language of obsessions and sensory perceptions were programmed into the device and he made the greatest of efforts to understand why words like ‘the’ and ‘he’ and ‘want’ and ‘no’ were so important to me. We met in the middle and we’ve been there ever since.

That system, that bridge, that device was what brought us together and has pushed Ewan into the language of words, sentences, fragments, verbs, adjectives, and pronouns. These concepts are still difficult for him and spontaneous language is something that he still struggles with. Obviously Ewan is very literal in his interpretation of the language. He still struggles with providing the context and background of a story—often leaving out really important information that helps me understand what he’s trying to tell me. Often I play detective and must draw the story out. He still struggles with the social use of language and the idea of the 'little white lie'. He still struggles with the idioms and the slang. He is baffled by the double entendre and listens with confusion as people say everything but what they really mean to say.

Learning to communicate with the natives has been hard for Ewan. It is a process that has taken years and will take many more before it becomes more intuitive for him. It is a process that has taken him from signs to PECS to devices to natural speech and he continues to push the boundaries of possibility.

I believe that for some children with autism—language is facilitated by sign, it is brought forth through PECS, it is made possible through a communication device—and for others we have yet to find that tool, that bridge that makes the leap from the autistic language to the neurotypical language. For some children, we have yet to crack the language code and the autistic Rosetta Stone has yet to be found. But it’s there, I know it is—and what it takes is ingenuity and creativity on our part to help find that tool.

If you have a child whose first language isn’t English I urge you to look for that tool. I urge you to try things that others have said aren’t possible. I urge you to put the words, “not a good candidate” completely out of your mind. I’ve seen children who everyone else had given up on surprise the world with a touch to a device. I’ve seen children who defy the expectations of those who believe “he’s not a good candidate” reach over and use a communication device to say, “I want juice” or “I love you” or spell “H-A-P-P-Y”. These small words and phrases may not seem like much, but in reality language is made up of small steps and what is a word and a phrase today can be conversation tomorrow.

A Child's Grief

2010-04-20T15:56:00.002-05:00

This afternoon Ewan turned to me and asked what seemed like a simple question:

Ewan: "Did you cry when I came out of your tummy mom?"

Me: "Not really.’"

Ewan: "Did you cry when Vaughn came out? What about Skye?"

Me: "I cried a lot when Skye was born, and a little when Vaughn was born and hardly at all when you were born."

Ewan: "Why didn’t you cry when I was borned?"

Me: "Because they gave me special medicine that made the pain go away."

Ewan: "Did that medicine go into my mouth while I was in your tummy?"

Me: "No, it was a special kind that went in my back and it didn’t go into your tummy."

Ewan: "So then how did I get autism then?"

Me: "You were born that way Ewan, it’s part of who you are—almost all of us have a little bit of autism Ewan. Autism is in your genes, it makes you you and it makes some things easier and some things harder.

Ewan: "But I’m not wearing jeans mom."

I am continually surprised by the way Ewan continues to process and understand what it means to be autistic. Just when I think he is not self-aware enough to handle the gravity of the situation, he says the most insightful things. The inner workings of his mind continue to amaze me. Not many 8 year olds have such a delicate appreciation of what it means to be different and to think differently. He is right now, trying to make sense of the knowledge he has been given. Trying to make sense of the complex world around him. Trying to find his place in this world.

Whether he recognizes it or not, Ewan is grieving. Much like the parent who grieves upon hearing the words, "Your child has autism", Ewan is too moving through the phases of grief. He is looking for that cause, that thing, that explanation that would help it all make sense. That event, that moment, that happenstance that has made him autistic. Much like the mother does in thinking about everything she did or didn't do during pregnancy. Blame is but one step on a lifelong goal towards acceptance and understanding.

One of the downsides to Autism Awareness Month is that we are often bombarded with all things autism. The good, the bad, and the ugly. It's a wild ride for parents but just imagine what that must feel like to the person with autism.

I once heard a mother talk about her autistic child as a 'shell of a human being.' At that moment, I remember wondering what must her child think about this? It would be unwise to assume the child with autism doesn't understand that phrase, wasn't listening, and wasn't internalizing the frustration and grief of the mother. I think about the child with autism in the month of April a lot. I think about how hard it must be to develop a positive self-esteem when bombarded with notions of cures and quick fixes and diseases. These children often deal with depression and negative self-image enough in their lives. There is a reason suicide is a problem for so many with autism.

Yes, the person with autism is different. Yes, their lives are very different than some of our own. Yes, some of their priorities are different than most others. Yet they still have value. Their lives still have meaning. They still have so much to offer the rest of us. Those with autism will always teach us more than we will ever teach them.

Grief is a cycle. It is not a simple upward motion from denial to acceptance. It cycles around and around again with each new event in life. The same holds true for the person with autism. I know that as Ewan struggles with comprehending the depth of the situation at 8, he will come back to these same struggles at 15, at 21, at 37, and the rest of his life. It is his path now to walk, to find his place in The Autism Life. I am merely here to help him back up when he falls, to encourage him when he is discouraged, and to give him hope when he feels all hope is gone. Ewan must find his own path, must blaze a trail for himself through this often cruel and demanding life. And he's just taken his first steps towards a brave new world.

The Yard Salad

2010-04-20T15:54:00.001-05:00

I got a message from a family yesterday that I hold near and dear to my heart. Ellen and Larry are raising three great children, one of whom has an autism spectrum disorder. Joey is a child that makes me rethink everything I think I know about autism. He constantly pushes me to be more creative, to think miles outside the box, and to see the world from a perspective that sometimes seems as alien as a Martian landscape. Joey is a child that could easily be lost in the clinical terminology and educational minefields we often see in autism spectrum disorders. It would be easy to say there’s nothing that can help, no way to connect, no bridges to build, no sense in even trying to understand his alien little world. It would be easy but it wouldn’t be in Joey’s best interest.

You see, I believe in Joey.

I believe he has more to offer me than I could ever offer him. I see beyond the labels and beyond the needs and beyond the struggles to some core spark that only Joey has. It might be easier to say we’ll never understand Joey, but sometimes the hardest thing and the right thing are the same.

The message I got from Ellen was an update on Joey’s feeding progress. I myself have dealt with feeding problems and the kiddo on the spectrum—Ewan is the classical ‘complex’ kid—not just autistic but dealing with co-morbidities and difficulties that lie outside the spectrum. Ewan has dealt with his own feeding aversions and medical care but when I think of Joey, I think of the mother of all feeding problems.

Joey is about 5 minutes away from supplemental tube feedings and in reality, the reason he currently doesn’t have a tube already is because there’s just no way the ‘autistic’ part of Joey could handle the intrusion. Joey’s mom and dad have fought harder and longer and without break than any other parent I’ve ever met—fought for every bite, every sip, and every foray into the world of food. The fact is that for some children with autism—eating is not instinctual. The fact is some of them will starve before eating what's on their plate. Eating is hard work for these children. It takes every ounce of their strength to sit at the table day after day and night after night. It takes every ounce of resolve to look at this alien food item and put it in their mouths. We rarely recognize the sheer determination these children have in coming back to the table again and again. And we rarely respect what they can and can't handle.

The fact is children with feeding problems often don’t recognize food as food. For us, as adults, we recognize food versus non food items pretty easily. That is, until we visit another country with differing views of what the word ‘edible’ means. Plop most of us down in the Amazon and the majority of us won’t recognize the ‘food’ readily available.

It’s all about context.

As adults, we have a lifetime of learning experiences that have taught us what food is, where it comes from, what it might taste like, and what our preferences might be. Children lack that context. Children lack that experience. It’s as if they are continually foraging in that Amazonian jungle looking for the neon sign flashing, “This is edible.” This is why food education is so important to all children, but most especially children who see food a little bit differently.

For Joey, food looks like leaves. Joey has had some tough times in his life but right now he likes spinach leaves. Last summer, he was interested in the Hosta plants and peppers found in his yard. In his mind, what looks like food should look like some variety of vegetable—he is the ultimate hippy, the ultimate vegetarian, the ultimate gatherer. Ellen and Joey’s feeding team (Food Chaining gals) were able to ‘chain’ Joey’s interest from the pretty Hosta plants in the yard towards spinach and he now eats that by the truckload.

Yesterday, Ellen let me know that while on the playground Joey went over and started picking and eating clovers. Based on that, Ellen sent Joey to school with a big bag of wild baby arugula. The staff placed the arugula out in the yard and let Joey ‘forage’ for his food. And he loved it. And he ate the whole giant bag of it. And he also ate some clover and some dandelion as well. It was probably the most nutritious snack being eaten in a 40 mile radius yesterday—and for Joey it didn’t need to come prepackaged in a sterile little plastic bag.

Now, is this a very different way of approaching the idea of eating and food education? Yep, it sure is. But sometimes we must force ourselves out of the box to see the world from an autistic standpoint. Sometimes we’ve got to blow the box up into a million tiny pieces and allow ourselves the ability to strike out in a brave new way and see the world from an autistic perspective. Sometimes we need to chuck the status quo out to have eyes that see.

Sometimes we don’t need a bowl of salad—sometimes we need a yard salad. If we continually try and push this child into the ‘typical’ mold we may just miss the boat entirely. This child needs us to be flexible, needs us to change the way WE think, needs us to find new and CREATIVE ways of teaching. We often expect the child with autism to conform to OUR way of thinking, to OUR expectations, to OUR standards. Yet we don’t often have those same expectations of ourselves.

It’s about building bridges: bridges between the world of autism and the world of the neurotypical. Joey’s bridge is the edible yard and Ellen is already planning her garden and summer plantings. Stretch your imagination. Find your edible yard. Look for bridges wherever they might be. And if you decide to pick up some clover and start chomping—add salt, it helps with digestion!

A Month for a Lifetime

2010-04-20T15:53:00.001-05:00

April is Autism Awareness Month. One month to raise awareness and spread understanding for those who will live their entire lives seeing the world from another perspective. One month to spread patience and information for a lifetime of being misunderstood. One month to advocate for an inclusive community for a lifetime of feeling on the fringe.

What does Autism Awareness Month really stand for?

It is about parents, families, teachers, friends, neighbors, communities, therapists, scientists, doctors, and groups all working together to improve the quality of life for people with autism. It is about bringing two worlds closer together: the world of the neurotypical and the world of the autistic. It is about giving people the tools they need to produce change. It is about information. It is about learning what The Autism Life means: for those with autism, for those who raise a child with autism, for those who teach students with autism, for those who treat the patient with autism, and for those who believe we can make a better life for everyone.

We are given opportunities throughout life to drop a pebble in the water and watch the waves grow and expand. We are given opportunities to create change on a national level by making one phone call or writing one letter. We are given opportunities to remove barriers rather than create them. We are given opportunities to make a lasting difference in a person’s life with almost no effort on our part at all. And you can do all these things without spending a dime. Patience, understanding, and acceptance are free of charge.

People with autism are some of the best people you will ever meet. People with autism will change the way you think about yourself, about life, and about the world. If you just give them the chance to be in your life and in your world.

This past week our local community wanted to have an autism friendly movie showing for children with autism and their families. The local theater had initially refused to participate. So our little corner of the autism universe banded together and called corporate office to ask for change, for accommodation, and for respect. I'm proud to say that at the end of the month, our local movie theater will now be holding a sensory friendly movie for our children and their loved ones. For the first time, some of our children and caregivers will be going to the movies. This is change. This is awareness. This is what April is about. This is what every single day should be about.

Start a conversation about autism today. Speak autism with me and teach others to speak it too.

Be a part of the autism movement. One minute of your life can make a lifetime of difference for a person with autism. Advocate now, advocate loudly, and advocate every single day. Because if you don’t do it, no one else will.

Tornado Alley

2010-04-20T15:52:00.000-05:00

Spring is here. Flowers are blooming, trees are budding, the sun is shining and we are practicing tornado drills. I live in the Midwest which means every spring brings forth warmer temperatures and cloud rotation and tornado warnings. Tornado warnings that my son on the spectrum takes VERY seriously. He enforces the ‘closet rule’ with the efficiency of a military general when the sky darkens with the merest hint of severe weather.

The weather—it’s a love / scared to death relationship for Ewan. He loves tornadoes. Loves to talk about them, loves to watch videos about them, loves to read about them, loves to play that Wii game Tornado Alley and watch the tornado gobble up everything around it as it grows into an F5. He knows the Fujita Damage Scale better than any Weather Channel staffer and as he eloquently stated yesterday, ‘If it’s an F1, F2, or F3 we might survive. But if it’s an F5 we’re all gonna die.’

He is obsessed with finding what he calls the secrets of the tornado—he is the living embodiment of Michael Crichton’s Twister cast. He thinks the tornado chaser is quite possibly the coolest person in the world. No need for athletic role models for this kid—he thinks Jim Cantore from The Weather Channel walks on water.

Obsessions are a mixed bag of blessings, irritations, and deep breathing exercises. They are the air these children breathe and the very meaning of life. And for caregivers—well, let’s just say that the person who created Advil surely had a kid on the spectrum obsessed with something.

I’ve learned to like what Ewan finds fascinating over the years. We’ve went from volcanoes to earthquakes to planets to bugs to weather systems colliding in mid-air. As a family we’ve learned quite a lot about volcanic structure and formation, plate tectonics and seismography, gravity and rotation, arthropods and pupae, and the ever exciting cumulonimbus clouds. At this point, my fact based knowledge borders on savant like—I now play a really mean game of Trivial Pursuit.

Obsessions have given Ewan all those answers to the questions about life, the universe and everything. Douglas Adams would be proud to know Ewan has them all written in an invisible language embedded in the core of his being. Obsessions have given us the tools to help him understand all those other details to life. His love of plants helped bridge the world between food and aversion. His love of the body has helped him understand the world of migraines and his allergies. His love of video games has helped bring him closer to the world of cinema—who would’ve thought Lego Indiana Jones for the Wii would make him a George Lucas fan?

You never know where an obsession will take you. Love the obsessions, respect the obsessions, make bridges out of obsessions. Use the obsessions to create meaning from chaos. Use the obsessions to find the answers to life, the universe, and everything. And keep the Advil handy…

The Ham Water Incident

2010-04-20T15:50:00.001-05:00

Today was Easter.

Yet another holiday dinner where my two youngest spent the meal outside while everyone else feasted on ham, potatoes, cole slaw, rolls, corn, green beans, and lemon pie. Yet another holiday where the chaos of the social holiday nightmare was too much for Ewan. Yet another holiday where the swirling tornado of smells forced Vaughn outside to the sanctuary of fresh air. If Ewan's church is his bedroom, then Vaughn's temple is the great outdoors.

Thankfully, I no longer feel any guilt about the way these two choose to spend holiday dinners. They have their limits and I can appreciate and respect these boundaries as they give us what they can when they can. But today, for the first time--I felt just an inkling of what a holiday dinner can smell and feel like to an easily overwhelmed sensory kiddo.

Today, I had to smell the Ham Water.

Because it was such a wonderfully warm and sunny spring Easter day, we had the windows open in the dining room. I had the choice seat directly across from this open and breezy window. In between me and my window lay the ham. Now, I don't love ham but I don't hate it either. I prefer turkey or chicken or steak but ham and Easter dinner goes together like peas and carrots so when Easter rolls around, ham is on the menu whether Miss Lisha likes it or not. What I really don't like though, are the juices the ham cooks in--i.e., the ham water.

Ham water smells a bit like sweaty feet. It's not something that generally arouses the appetite, especially when the breeze sends this fetid smell straight into my nostrils and directly into my brain. For the entire meal, the ham water smell washed over me again and again. For the entire meal, I tried to hold my breath and eat at the same time. Then I couldn't taste my food and quite possibly started to turn rather Smurflike. If you can't taste your food, then it feels a little bit like mush and yet again, the appetite takes a nose dive. The pleasure of the Easter meal was annihilated.

Miss Lisha likes to eat. A lot. So when I had skipped breakfast in an attempt to stuff myself at lunch and realized that I was completely nauseated by the ham water--I found myself nearly in tears and getting more ticked off by the minute. Had I not been surrounded by my family and children--I might have chucked the ham and the casserole dish straight out the window and threw a temper tantrum right then and there. I was about to the throw the mother of all behaviors. I was hungry yet nauseated. I was reaching out only to find myself pushing back at the exact same time. So I left on an errand to re-group and re-group I did. I will never again rebuke Ewan for needing to re-group and seek solitude in his room. I can scarcely imagine what it is he needs to re-group from--I only know he must do it to survive.

I tried to imagine myself with autism right at that moment. Surrounded by people, conversation richoceting off the walls like gunfire, eyes staring, forks scraping, ham water smells wafting up my nose, and hungry. Hungry but repulsed. Anxious and overwhelmed. Lost in the idioms and slang and trying like hell to participate in the world around me even when I'm two minutes behind everyone else. That's what holiday dinners are like. This is the autistic nightmare.

Next holiday, imagine yourself in a pair of autistic shoes. Imagine what this social hour on steroids must sound and feel like to the person with autism. Imagine how fast you would run from this nightmare only to find yourself pushed back again and again and again by those who want you to just enjoy the holiday like everyone else. Imagine how solitude must feel like waking up from the terror of the nightmare.

The Autistic Patient's Manifesto

2010-04-14T07:03:00.001-05:00

For those in the health care profession please take a moment to read through what I consider to be merely the starting point of the Autistic Patient’s Manifesto.

A patient with autism needs the world to slow down. If you live life on a carousel with events careening out of control on a daily basis, imagine what life is like in a hospital setting. Alarms buzzing, lights flashing and burning the eyes with the intensity of a thousand suns, people darting left and right, being wheeled from room to room—life in a clinical setting moves quickly with no recognizable pattern of predictability. The autistic individual thrives in predictability. Make your movements, your actions, and words as slow and predictable as possible because nothing else is in that environment.

A patient with autism needs environmental adjustments. If you live life hearing more, smelling more, feeling more, and tasting more—that hospital gown isn’t just uncomfortable, it’s scratches with the intensity of thousand tiny bees. That medication doesn’t merely taste like cherries gone amuck—it burns like a thousand shots of vodka. That respirations alarm screams with the intensity of a thousand civil defense air sirens. That anesthetic smell doesn’t just hit you once when you walk in—it washes over you again and again like the crashing of a thousand waves drowning you in a suffocating sea. The autistic individual needs you to control the environment and to adjust his or her surroundings because he or she cannot control it internally.

A patient with autism needs to look away. The eyes are the windows to the soul and contain a thousand mysteries of life. The endless depth and sanctity of the soul blind her eyes and mind. The endless enigma of things said and yet not said reach out from your eyes to hers. The very essence of who you are reaches out to another who may not be ready to reach back. Not yet, not now, not here.

A patient with autism is confused, scared, and in fight or flight. The patient with autism doesn’t want to hold a conversation with you. The patient with autism doesn’t want to listen to the drone of your mindless chatter—words filling the air like smoke and choking the brain. There is such a thing as too much language and too many words. Words that often have no meaning and only serve to further confuse the autistic patient. Words meant to comfort, leave nothing but bewilderment and distraction in their wake. Two, three, and sometimes more staff talking at the same time leaves nothing but an avalanche of babbling gibberish in the brain. The autistic individual needs you to understand that less is more. The autistic individual needs you to understand that ONE person speaks, ONE person at a time.

A patient with autism has the right to someone who ‘speaks’ autism. A patient with autism needs that autistic interpreter no less than the deaf patient needs one. For all procedures, for all communications, for all consent, and in all environments. The patient with autism communicates differently and sometimes not at all. The patient with autism may be silent but this does not mean he or she has nothing to say. The patient with autism may speak relentlessly yet not say what he or she truly wants to say. The patient with autism deserves the right and the respect to be heard, to be understood, and to be given a voice.

A patient with autism is in your hospital and in your clinic right now, this very second. A patient with autism is being denied these things right now in your hospital and in your clinic. A patient with autism suffers and is in pain right now in your hospital and in your clinic. Advocate now. Advocate loudly. Advocate every single time. Because if you don’t, no one else will.

The 'Mild' Fallacy

2010-04-06T08:10:00.001-05:00

Too often when working alongside children with autism I hear people say, “Oh he’s just mildly autistic,” as if this somehow exempts the child from needing support or patience or understanding. Somehow ‘mild’ means ‘pretty much typical’ in some minds. I’m here to tell you, there is nothing ‘mild’ about autism no matter where you fall upon the spectrum.

Today I took my son to a Children’s hospital to have a minor outpatient surgery. This was not his first surgery of this nature and it won’t be the last. My son also has something called Eosinophilic Esophagitis, a very painful disorder that affects the esophagus and requires multiple upper endoscopies with biopsy to determine course of the disease and effectiveness of treatment. Because he is also autistic, we know that this is doubly difficult for him. We prepare him for the stress of unfamiliar environments, unfamiliar staff, and unfamiliar sights, sounds, and smells by walking him through the sequences over and over and over before he takes one step inside the building. By the time Ewan gets to the OR, he could write the book on how to do it. That repetitive exposure to procedures is comforting to him. Now this may or may not work for all children on the spectrum, but it works for Ewan.

Children with autism deal with enough anxiety on a daily basis and whatever parents and staff can do to reduce that anxiety in special circumstances, the better off everyone is. The more we work to reduce anxiety through cognitive and language supports, the less we need extra medications and the less we require the need to use restraints. The supports we can provide children with autism quite often are free of charge and require nothing from you but a change in your mannerisms. Let only one person speak, slow the rate of your speech, turn the lights down, maintain a calm demeanor, and explain as much as the child needs you to. Allow them to explore the materials and the space in a safe way. Give them the time they need to acclimate to such a foreign environment. Respect the fact that this child is experiencing EVERYTHING in a way you can’t imagine. None of these things cost you anything. None of these things take superhuman strength or unrealistic expectations on the part of caregivers.

However, if we look at a chart labeled ‘Mild Autism’ it’s easy to assume that mild means you’re off the hook. It’s easy to assume that this ‘mildly’ autistic individual doesn’t need your support, or your patience, or your understanding—after all, he’s only ‘mildly’ affected right? Wrong. There is nothing ‘mild’ about autism, no matter where you fall upon the spectrum.

It’s like being a ‘little bit pregnant’. You either are or you’re not. You can’t be ‘mildly’ pregnant. If we assume that a ‘mildly’ autistic individual is mild based off his verbal speech ability, then we forget that his coping skills may not be on the same level. If we assume that a ‘mildly’ autistic individual is mild based off his lack of screaming and kicking and biting the staff, then we forget that his sensory needs may still be great—that the environment may still be too loud, that the smells may be nauseating, that the lights might be provoking headaches. If we assume that a ‘mildly’ autistic individual is mild based off his superior knowledge of bugs, then we forget that autism is a social disorder at its heart and that anything involving other people—most especially strangers—provokes serious anxiety at the situation. And the anxiety can be subtle. The child with autism may not appear anxious to those who don’t know him or her. It’s easy to assume that this ‘mildly’ autistic individual needs no extra steps of comfort to reduce that anxiety.

It is unfortunate that in this day and age that there still remain such deeply entrenched misconceptions about what autism is and what autism isn’t. It is unfortunate that we as parents and professionals advocating for those with autism must do so loudly and repeatedly. It is unfortunate that often, parents are the only champions and advocates a child with autism has in this world. And certainly, I was the only advocate for my son this morning in that hospital and I make no apologies for being the ‘Mom From Hell’. It takes so little from others in this world to improve the quality of life for individuals with autism yet we continue to fight so much to receive such small mercies. The barriers these children and adults face every single day are more than most people will climb in a lifetime. Don’t be yet another barrier in their lives. Be the support they need. Be the change they deserve.

Everyone here spoke autism

2010-04-04T20:20:00.001-05:00

Lately I have been thinking about the world of autism and the world of the neurotypical. Most of the time these two worlds are in orbit of each other in a solar system that keeps them at a distance. Very rarely do these two planets come close enough to get a glimpse of the inhabitants. More often than not, we gaze at each other from a distance trying desperately to understand the alienness of the other one. Such different ways of being and understanding has me thinking about the world of the hearing and the world of the deaf (not to mention my son with the imminent ear tube placement...) and it has me thinking about a book called 'Everyone Here Spoke Sign Language'. If you are at all interested in the world of the Deaf and the culture of the Deaf I highly suggest you read it.

In the book they speak about the culture of sign language on the island of Martha's Vineyard where hereditary deafness created the unique situation of one in four children being born congenitally deaf. Because so many children and adults were deaf on this isolated island, everyone used sign language. Deaf individuals used sign language with other deaf individuals. Deaf individuals used sign language with their hearing counterparts. Hearing individuals used sign language with each other. Sign was simply everywhere. It was quite possibly a Deaf Utopia. The individuals with deafness were not treated as being DISabled, merely DIFFERENTLY-abled. In fact, as the author interviews the older population on the island about who was deaf, many times they had a hard time even remembering that person AS deaf. He or she was merely a human being and nothing more.

Martin Luther King, Jr. had a dream that racial inequality would end and discrimination would become a thing of the past. I have a dream that one day, we will look at autism much like how those on Martha's Vineyard did with the Deaf. I have a dream that one day, we will say everyone here spoke autism.

What would that utopia be like?

Everyone would understand that we all have something to offer to humanity and to the world--that we all have value.

Everyone would understand that we all perceive the world differently and have different needs.

Everyone would understand that development happens at different times and that we all walk to the beat of our own drum.

Everyone would know what a Boardmaker symbol is.

Everyone would understand that if a child with autism screams and cries at the store, that it's not a reflection on his parents or her teachers but that the store is too loud and too bright and too much.

Everyone would understand that he's not just a rude person, but rather that he uses language differently than you do.

Everyone would understand that sometimes difference is a good thing.

Everyone would understand that IQ is not based on how many words you speak aloud.

Everyone would understand that all she needs is a little patience and some solitude.

Judgments and prejudices would fade away into obscurity. I have a dream that one day, we will say everyone here spoke autism.

Say What?

2010-03-25T08:00:00.001-05:00

Over the past week I have become acutely aware of just how important the ear really is. My youngest has had fluid on his ears and is getting ready to have tubes put in. The last few days have been an exercise in patience as every word spoken elicits the 'What?' response. He can't hear the TV, he can't hear us talking to him, he can't even hear the cars moving about the subdivision. The good part for him is that this is temporary. The good part is that with a 15 minute surgery he'll join the world of sounds and words once again. Imagine if you will, if you heard everything. Imagine if the world of sound was a confused jumble of noise and static. Imagine if you will, what's it like to be autistic.

People with autism frequently have difficulty with auditory processing. The ears work just fine, it's merely the auditory signal that gets jammed and jumbled once it reaches the brain. Sounds in the environment are hard to isolate, hard to ignore, and hard to work around. Being a parent, I realize just how important not only hearing is, but also the ability to tune things out. If we listened to every sound in the environment as if they are ALL important, not much is really understood. The context of every action, every thought, every experience gets jumbled in a cacophony of noise. The noise lacks meaning and significance and differentiating between what's important and what's not becomes impossible to discern. Differentiating between foreground noise and background noise becomes unimaginable.

Imagine being in the classroom and the teacher is talking about how to do next week's assignment. The teacher is speaking while students are shifting in their seats, tapping pencils and shuffling through papers. The window is open and another class is outside for recess. The building is close to a road and cars are traveling to and fro. A train whistle sounds in the distance. The wind is blowing and a breeze catches the trees outside and the leaves begin to rustle and shake. If you are a student with autism--you hear each one of these sounds as if each one carries the same level of importance and quite possibly always tied together. Math happens at the same time as the train schedule sends a choo-choo past the school every day and algebraic equations are forever linked to passenger trains.

Imagine going to the doctor and getting your blood drawn. It's already a stressful experience and all the staff is attempting to calm you down. Nurses and phlebotomists and parents are all talking at the same time each telling you, "It's ok", "We're almost done", or "It doesn't hurt that bad". All you hear is noise and none of it ends up being comforting because all meaning and significance is lost in the bedlam of babble. When speaking with the autistic person please remember to speak ONE at a time. Otherwise, you all speak and nothing is heard and nothing is understood.

Imagine being at home and trying to do your homework. Your brother is playing with his Star Wars figurines replete with George Lucas sound effects. Your sister is on the phone while the latest Lady Gaga song blares from her radio. The dishwasher runs in the kitchen and the washer is in the spin cycle while the dryer hums away. The television is set to the news channel and the Geico commercial is playing yet again. Your mom and dad are talking about the day's events. The dog barks at the cat as they both tear through the house. All while you have to finish today's essay on the importance of the food guide pyramid. And you can't tune any of it out. You hear it all, all the time, every day. Day in and day out--life is filled with noise and more noise. Silence may be golden, but you never really get to experience it.

Remember that what you say is as important as how you say it. Remember that noise pollution is a real problem for those with autism. Remember that if the child isn't understanding you and appears to be ignoring you that it has less to do with hearing nothing and everything to do with hearing it all.

The Yellow Brick Road

2010-03-20T14:14:00.002-05:00

“Your child has autism.”

These four words can change your life in ways that you can scarce imagine when you first hear them. It’s one thing to think them and it’s another to hear another human being say it. A mother or father or caregiver may think these words when looking at their child—but these thoughts are hidden away in the darkest parts of their heart hoping beyond hope that they will never actually be spoken—that they will remain hidden in the closet. When spoken out loud and openly for the first time you realize all your fears are true. You realize the life you thought you had no longer exists. It’s a moment of fear for the future. It’s a moment of desperation and sorrow. Once spoken aloud, you realize there is no looking back.

The first steps after these words feel as if you’re walking underwater—slow, unsure and under pressure. It’s almost as if the clock starts ticking down as soon as those words are uttered. The doomsday scenario in the disaster movie on the Sci-Fi channel comes to mind. You want to do something but you don’t know what. Hitting something seems like a good idea. Crying your eyes blind seems like a good idea. Blame—for yourself and everyone else feels like a good way to start. It’s a tornado of emotions and thoughts that swirls through your mind and heart till you feel like Dorothy landing in a strange world surrounded by strange people. Those you thought you knew and loved are all different and some are gone. Friends you thought you had will drift away as your thoughts and actions are consumed with all things autism. The family that was your rock now slips away as they can’t understand the child, the disorder, or you. Like Dorothy, you walk the yellow brick road to the Emerald City but unlike Dorothy you often walk alone—at least in the beginning.

The words ignite a fire in your soul though and from within you hear the call to arms, that siren song buried deep in the instincts of motherhood and fatherhood. Only, this time around, your instincts seem all wrong. What works for other children doesn’t work for this one. The yellow brick road gets twisted and confused and the Emerald City is never further away than at that moment. You spend all your waking time either with the child or looking up information about autism. You become an expert ‘Googler’ and have read every article and snippet on the web. You collect books about autism like a buyer for Barnes and Noble. Every magazine with the headline ‘Autism’ on the front page graces your coffee table. You DVR every show having anything remotely to do with autism. You live, eat, and breathe all things autism. Your every word becomes centered around it, your every thought hinges on it. You know the clock is ticking and you have thrown yourself into trying to stop the second hand from moving.

Then comes the epiphany. The moment of amazement and wonder. The first time you connect with your child. The first time you get a glimpse of his soul. The first time you actually understand his world and his life. The light bulb goes off and things start to fall into place. You realize that you walk with others on that yellow brick road. You meet other families, therapists, and educators who become your lifeline. Therapy starts to make sense, goals get achieved, and the clock seems to slow down. The rush and urgency seems to decelerate and in that moment life makes sense again. Purpose and understanding seep into your life in ways that others can only wonder at. The direction your life has gone in will amaze you. You’ll look back to that life before the yellow brick road and you’ll see how much richer your life is now than it ever has been. You begin to thank the powers that be for putting this child in your life.

We all walk down the yellow brick road. At times we walk it alone and other times we it walk together. You meet the Scarecrow—only this time you seek to understand the brain rather than to have one. You meet the Tin Man—only this time you learn that your heart grows with each step you take. You meet the Cowardly Lion—only this time you learn to have courage enough for the both you and your child. The yellow brick road takes you to a life once feared and later understood. On the yellow brick road you find confidence and determination. You find purpose and a will to do more. You find your faith and hope restored.

Autism is Not an Island

2010-03-18T15:55:00.004-05:00

The moment someone says to you, "Your child has autism" the world suddenly becomes a very lonely place.

With four little words life changes in ways that becomes inexplicable to the outsider. For awhile we may be left adrift in a sea of confusion only to wash up on an island insulated from everyone and everything else. It's easy to find yourself alone and intimidated. It's easy to find yourself stranded on Autism Island. Only this time, Ricardo Montalban and Tattoo aren't there to welcome you.

It's easy to stay on Autism Island--because it keeps you and your family insulated from everything beyond your control and far beyond the judgments and prejudices of others. It's easy to keep the world at bay from understanding you, from understanding your child, from understanding autism. It's easy but sometimes the hardest thing and the right are the same. It's easy to want to protect your child from the world but we cannot challenge prejudice in isolation. Our children need to experience the world outside the walls of home and school. Prejudices are the chains forged by ignorance to keep men apart (Countess of Blessington); it is our responsibility to bring the world of the neurotypical and the world of autism together. As Temple Grandin is so fond of saying, "The world needs all kinds of minds."

Sometimes it takes that helping hand, that gift of a shoulder to cry on, that courtesy of patience and compassion to rescue the stranded family from Autism Island. Autism doesn't happen only in the home. Autism doesn't happen only in the school. In the past, we left families adrift in the dark--relegating them to the depths of isolation and institutions. Yet autism is in our communities waiting to brought out into the light of day. Today we have the knowledge and the ability to do just that.

Autism isn't easy. It's demands more than you have to give--which can be difficult for the passerby to handle. Autism is difficult to understand, creating a world of myth and confusion about what it is and what it isn't. The month of April is just around the corner, the month dedicated to all things autism. Now is the time to stop, take a moment, and reach out to the autism community. Even if all you have to give is acceptance and patience. Now is the time to welcome the world of autism into your community, into your businesses, into your places of worship, and into your hearts and minds.

Right now, at this very moment, there is a family who is reeling from having heard those four little words. Your child has autism. Right now, at this very moment, there is a family lost and scared and without hope. Right now, at this very moment, there is a mother or a father looking at their child for the first time. Right now, at this very moment, someone is desperately seeking answers on the internet, in the bookstore, and in their heart.

Will you leave them adrift and lost or will you reach out? Will you be interested in only your own life or will you be interested in the lives of others? Dare to reach out your hand into the darkness to pull another hand into the light (N. Rice).

2010-03-16T17:25:00.003-05:00

At some point in the autism life, parents and caregivers will face the medication issue. Whether it's behaviors, anxiety, depression, or some other aspect of life--we will look to the pharmacy for help. Parents and caregivers stress over this and agonize over decisions of having to use medications--rightfully so, using medication is not an easy or simple decision. Yet often we look at having to explore medication as a failure on our part--and the guilt trip continues.

Using medication for the child with autism should not be taken lightly, but at times, it may have to be considered. Unfortunately, as it stands there are no medications that dissolve the core of autism spectrum disorders. The medications available are used to treat some of the more difficult characteristics seen in the child with autism: self-injury, seizure activity, anxiety, depression, anger, obsessive behaviors, and more. While the medication can treat a facet of an autism spectrum disorder, nothing on the market today can treat the core of the disorder.

The developing brain is a delicate thing. So the question of medication requires some thinking about risk versus beneffit. Many medications have side effects and finding a physician who can lead you through the maze of appropriate options is crucial. It's also important to note that generally speaking, with autism spectrum disorders, very small dosage amounts can produce dramatic results. It's not necessary to start with large doses or even the regular dose generally prescribed. It's always a good idea to start small, really small, and work your way up.

Watching for improvements is also important. Getting everyone on board--school, home, clinic, to watch for any changes--both negative and positive--is crucial. It's also important to note that if no changes are seen, there's no reason to continue a medication. As Temple Grandin has said many times about meds, "If you start using a medication in a person with autism, you should see an obvious improvement in behavior in a short period of time. If you do not see an obvious improvement, they probably should not be taking the stuff. It is that simple."

I'm not going to go into whether or not medication is the right thing to do because it's different for every child and every situation. Rather, I want to say that if it does happen to be a part of your child's life there's no reason to feel guilt over that decision. When anxiety is running rampant in your child's life, there's no shame in helping a child overcome that. It comes down to quality of life: can your child have an improved quality of life because of this medication? The decision to use medication should never be forced upon anyone and should never be used as a way to 'control' the child. It is a decision caregivers and physicians should come to together.

Medication is not a magic wand and will not replace the use of visual strategies, schedules, routines, social stories, and all the other hard work we as parents, teachers, and therapists do every day. There is no easy way out. Medication is simply another tool in the toolbox to help this child make it through the day. Used alone, medication is ineffective but as part of a comprehensive and holistic approach to life medication can be helpful. The priority for everyone involved should be improving this child's quality of life and helping this child reach his or her potential.

The Crystal Ball

2010-03-15T22:35:00.001-05:00

In the immortal words of Tom Petty, 'The waiting is the hardest part.'

When a child is diagnosed with autism at 12 months, 24 months, 4 years, or 10 years, parents are faced with a sudden and overwhelming ambiguous future. A flurry of questions ensue about what will this child be able to do in life. Will he play sports? Will she get married? Will he drive a car? Will she go to the prom?

A whole life flashes in front of a parent's eyes with no assurances about anything. And so we wait. We wait to see how life unfolds for this child. And sometimes, that's the hardest part.

When a child is diagnosed with autism there is a DIAGNOSIS, but there is no PROGNOSIS. Someone can tell you this child has autism, but no one can tell you what this child will do in life. The prognosis is different for everyone. A child who, at three years, has a very severe form of autism might provoke an impression of a grim outlook. Yet, no one, not one single person can tell you what this child will be like as an adult. What happens at three doesn't always happen at 23. Children, yes even those with autism, develop and grow and change and mature--and often it is in ways that will surprise you.

Just yesterday, as we drove our boys up to a local hospital for an appointment, my husband turned to me and said, "Do you remember when Ewan couldn't use the elevator? When we would have to run past the elevators like a strategically placed military strike team?" In a flash, I was taken back 4 years ago to the same hospital seeing my husband hold our son with a blanket over his head as we ran through the building past every set of elevators to the stairs. I can remember the crowds of people looking at us as if we were holding a timebomb (and trust me, we were). All over an elevator.

Today, my son walks in the elevator much like anyone else does, pushes the button and patiently waits for it to move. But 4 years ago, even SEEING an elevator elicited a meltdown of Chernobyl like proportions. Oh how far we've come. Yet when my son was that age I couldn't see the day when we could actually use an elevator. I couldn't imagine how we would get from here to there. I couldn't see the day when instead of running from the elevator, we would take that step into one.

The future is full of possibility though, with an entire world at your feet. All it takes is the first step. As Abraham Lincoln said, "The best thing about the future is that it comes only one day at a time." Four years ago I couldn't imagine the day we'd use an elevator and I wonder what surprises the next four years of life will bring us.

It's a leap of faith because the future is so uncertain. It's uncertain for everyone to be sure yet as soon as the doctor says, 'This is autism', these twin feelings of doubt and possibility envelope every thought and action. It's a leap of faith to believe that the hours and hours of therapy will actually help this child. It's a leap of faith to believe that the days and years of education will help connect the dots in a way this child will understand. It's a leap of faith to believe that this child's developmental path will lead to the life he reaches out for. The statement 'he walks to the beat of his own drum' is never more true than when speaking about the child with autism--and we wonder every day if we are playing the right tune.

Today I sit in awe and wonder as I think about my son. How far he has come and how far he has to go. Every single day he surprises me and inspires me to believe in the impossible. Every single day he walks beyond the bounds of possibility driven by some inner momentum. Driven by the sound of his own drum. A sound I cannot always hear but am always listening for.

A Smelly Dilemma

2010-03-13T13:29:00.002-06:00

Smell is a tricky thing for most of us. We use our olfactory sense everyday to help us make those important ‘should I drink this milk’ kinds of decisions. Science has shown us that the olfactory sense is a highly evolved one used by animal and insects in regulating almost every aspect of daily life. We are learning a great deal about the role of pheromones in the life of animals and insects and are just beginning to understand their role in human behavior. Olfaction in humans is one of the most ancient of evolutionary senses and when combined with vision and taste it can make for a great restaurant experience.

Except when the lady behind you is drenched in perfume.

That’s when the sense of smell tends to overwhelm and flood the brain—provoking a hit and run kind of situation for Miss Lisha. While trying to eat my eagerly awaited Frisco Melt the other day, my nasal passages were suddenly attacked by my neighbor’s flowery perfume. Now, I don’t know how many of you have eaten a Frisco Melt at Steak n Shake, but I can assure you there are no floral ingredients to this sandwich. My appetite was completely thrown off and my nasal hairs were practically burned right out of my nose from having been exposed to what were clearly illegal levels of Jean Nate. Headache ensued and it took the better part of the afternoon to get that smell out of my system while on the phone with the EPA investigating criminal charges.

I don’t often wear perfume. Mostly because I’m around individuals who can’t handle the overpowering aroma of the Bath and Body Works products invading most bathroom shelves. Those living with an autism spectrum disorder generally have one of two responses to smell: Love It or Leave It. If this is a person who’ loves it’, they’ll be smelling your hair and your hands and have a candle stuck halfway up their nose for most of the day. If this is a ‘leave it’ kind of situation—they’ll be in the furthest corner away from the potpourri waiting for it to spontaneously combust and disappear from the earth. I tend to err on the side of caution and avoid lathering myself or the environment in the pine and roses or bananas and hibiscus smells that permeate the Bath and Body Works stores.

Smell, being the powerful sense that it is, can evoke fairly powerful reactions in an individual with autism. I’ve seen children make a bee line for the nearest door when confronted with the smell of popcorn. I’ve seen children vomit when exposed to the cleaners used for bathrooms and kitchens or even the seemingly innocent smell of vanilla. Don’t discount the sense of smell when trying to understand WHY this child can’t handle an environment or situation—whether that’s the classroom, playground, or kitchen—smell can drastically affect this child’s ability to participate. And don’t discount the sense of smell as the reason Miss Lisha slaps you upside the head as you sit next to her at the restaurant.

I’m obviously sensitive to smell myself so I can relate to the kiddo who takes one whiff of your shampoo and runs for the hills. Be aware that your laundry is coated in Tropical Paradise detergent, Tahiti Mountain Breeze Downy, and Renewing Rain Bounce dyer sheets. Be aware that your oatmeal and vanilla shampoo and conditioner stays in your hair while your banana body wash covers every inch your skin. Be aware that your Bath and Body works Plumeria lotion and Exotic Coconut body spray announces your presence long before you walk in the door. The total effect of these smells is overwhelming to the individual who is a ‘leave it’ kind of person. It’s overwhelming and it’s nauseating.

Imagine trying to wrangle up an appetite and eat a decent meal with a eucalyptus leaf and a sun ripened raspberry stuck up your nose. Imagine trying to do complex math problems with a potpourri of apple chunks and cinnamon sticks swirling around your head like the buzzing of a thousand bees. Imagine to read when the patchouli incense sticks make your eyes water with an intensity of a thousand Niagara Falls.

Stop and think about these things before you even step foot into the world of autism. Because I guarantee you the person with autism who is a ‘leave it’ kind of person is thinking about these smells, distracted by these smells, and is practically ill from these smells—and certainly not hungry anymore because of it.

The Line in the Sand

2010-03-12T08:16:00.002-06:00

Raising and working with children isn’t easy. Teaching children about life requires one to have a variety of skills, whether we are talking about typically developing children or not. The greatest tools anyone can have most often are the easiest ones to acquire: for right now let’s think common sense and flexibility.

Being with children is a fluid experience. Things are always in motion and life can change in a moment’s notice. Nothing is set in stone for everyday life with children. Moses came down from the mountain with the Ten Commandments, yet I fail to remember any other tablets in regards to everyday life with a child. I’m pretty sure not one of those Commandments had anything to do with the t-shirt versus long sleeved shirt battle I have in my living room every morning. In order to get my child to school with SOMETHING on, I had to compromise to what he could live with and what I could live with. Sure, I could’ve drawn a line in the sand and said, ‘It’s the sweatshirt or nothing’, but I feel confident in saying that I would have seen that boy streaking buck naked down the road towards the school bus had I done so.

Too often we draw a line in the sand.

Too often we make rules that are, in reality, just darn near silly.

Too often we don’t think how ridiculous these rules are until we think of applying the situation to an adult.

Take for example one of my all time favorite ‘line in the sand’ stories. Little Billy wanted to walk in the grass next to the sidewalk between school buildings every day. This caused quite a commotion because all the other children walked gleefully on the sidewalk between these very same buildings. Yet Billy persisted in creating his own path of turf and dirt and simply refused to move his path to the concrete.

Lines were drawn and darn it, Billy was going to walk on the concrete. Behaviors ensued. Stress levels rose for everyone involved. All over concrete versus turf.

Now let’s think about this for a second. When confronted with the question ‘How do we get Billy to walk on the sidewalk’, my response was ‘Why can’t he walk in the grass?” As long as there were no hidden explosive landmines scattered across this school’s landscape planted by some errant and angry gardener, it’s hard to imagine the harm being done by walking in the grass next to the sidewalk.

Often the best answer is the simplest one.

Ask yourself ‘why not’ to any line in the sand issue and if the cons just really aren’t that provocative—move on—trust me there are definitely far more important issues to take a stand on. Find ways to problem solve that teach the both of you something about life. Drawing a line in the sand over inconsequential parts of life, implies you are a ‘my way or the highway’ kind of person—and you know my feelings on that (Petsmart still has that hamster sale going on you know).

When working alongside a child with autism, I know without a doubt who the person incapable of flexibility is in the room. And it’s not me.

I know that I can’t be as inflexible as this child is or else the entire time is spent butting heads against each other and nothing gets accomplished. This child is neurologically incapable of being flexible. He requires an enormous effort to understand changes in routine. He requires our guidance in showing him how to live in a world that is in a state of constant change. These children need us to teach them HOW to be flexible. He requires us to understand the difference between the things that matter and the things that don’t.

There’s a reason the book ‘Don’t Sweat the Small Stuff’ was a bestseller.

“Often we allow ourselves to get worked up about things that, upon closer examination, aren’t really that big a deal. We focus on little problems that get blown out of proportion.” ~Richard Carlson

The All Kids Notion

2010-02-26T07:03:00.005-06:00

As many of you know, Miss Lisha has several pet peeves. Today I heard one of my all time pet peeves pretty much the whole day—following me around like a bad habit. The phrase, ‘Well all kids do that’ gets under my skin like an infectious rash.

It’s not that I don’t believe children with autism will never do things that typically developing children do. Of course there will be parts of this child’s development that will be right on the money to what all the other children are able to accomplish with their feet and hands and mouths at the exact same age. It’s merely the frame of context that is often so neatly swept under the rug as we think about the autistic child. When we use the phrase ‘all kids’, we fail to appreciate the pervasiveness of autism. Autism doesn’t only happen at 9 o’clock in the morning. Autism doesn’t only occur when you wear uncomfortable clothes. Autism doesn’t only affect your life when you forget to take a shower. Autism is a part of you, every part of you, every part of every day.

Let’s take jumping as an example. Do children with autism jump? Sure they do. Do typically developing children jump? You betcha. Can typically developing children jump around like Mexican jumping beans? Oh yeah they can, especially when presented with situations that revolve around urinary urgency. If I saw two children jumping, one autistic and one not, could I say ‘Well all kids jump’? I could but I could also be generalizing a bit too much. Because is it possible that the child with autism is jumping excessively as compared to a typically developing child? Yep. Are the reasons a child with autism jumps different than those of typically developing children? They can be, but they can also be for the same reasons.

To assume these two scenarios are exactly the same assumes the quality and quantity of jumping is the same. What about pointing? Can children with autism make their index finger stand out from the rest of the fingers? Sure. But is the quality of this action the same as the typically developing child? Is the child using this pointing action to indicate a protoimperative or protodeclarative thought? So the question we have to ask ourselves is this: is the experience of jumping and pointing and the rest of life different for our autistic children?

Here’s the conundrum: you can’t separate the autistic from the individual anymore than you can separate the sun from our solar system. You cannot remove the autistic lens that this child perceives the world from. This autistic lens will color every second of this person’s life in a way that a neurotypical person can scarce begin to fathom. The context of autistic pervasiveness cannot be separated out and we cannot view this child as experiencing the world in the same way as all the other children on the playground or in the classroom or in the medical setting will. What you see through your eyes is not what your son sees. What you hear through your ears is not what your student hears. What you feel on your skin and in your hair is not what your patient feels.

For someone who thinks about the world so radically different, how can we possibly use the phrase ‘all kids do that’ in response to anything this child does or feels? Because even if the autistic child and the neurotypical child are doing the same action—the context will forever be different. The phrase ‘walk a mile in his shoes’ takes on a whole new connotation. So in essence, the phrase ‘All kids do this’ has no meaning when applied to the child with autism—because not all kids have autism. These two children will walk a very different path in life, even if they pass by the same landmarks.

We can apply this philosophy to every part of life, every second of the day, every single day of their lives. An autistic child will derive meaning from events and actions that are drastically different because of the pervasiveness of the disorder. An autistic child will learn from experiences in a radically different way because they perceive the entire situation from a different perspective. They walk on a path that we cannot. All children will make social faux pas as they learn to navigate the world. All children will say embarrassing things to strangers. Yet the typically developing child will learn from these social faux pas by the reactions of others in the environment, by watching mom and dad, by seeing what’s successful in their peers. This is not necessarily true for the autistic child because he or she may not even recognize the social faux pas to begin with. And how can you learn from something that isn’t there? Hence the phrase ‘All kids say embarrassing things’ cannot be universally applied to any situation that involves the child with autism.

As Jim Sinclair so eloquently puts it, “Autism is a way of being. It is pervasive. It colors every encounter, every sensation, perception, thought, emotion, and encounter. Every aspect of existence. It’s not possible to separate the autism from the person.”

Changes in Latitudes, Changes in Attitudes

2010-02-24T14:48:00.005-06:00

Every morning, a fierce battle is waged in my living room. The hostilities emerge not from some deep fundamental and philosophical differences between mother and son—the conflict arises over a pair of pants and a shirt.

It’s not the War of the Roses in this house, it’s the War of T-Shirts and Shorts.

I’ve come to realize that my son, Vaughn, is living in the wrong climatic zone of the United States. Clearly, he was meant to live in a tropical maritime climate and not the Midwest. He is the physical incarnation of the song Margaritaville…without the margaritas. He is the 5 year old equivalent of Jimmy Buffet.

The perfect world in Vaughn’s eyes includes t-shirts, shorts, and sandals. The required clothing for a Midwestern winter (especially the one we are currently weathering) does not fit my son’s idea of what clothing should be. Now mind you, this is my quote unquote typically developing child here. His sensory world does not have room for snowboots and parkas. And I must admit, I am sick to death of sweaters and I eagerly await the day when I can banish the winter wear to the depths of the garage.

In the meantime though, Illinois continues to feel the wrath of Old Man Winter and t-shirts and shorts feel a lifetime away, moreso for Vaughn than anyone else.

The T-Shirt Treaty was signed this morning by both mother and son. I have agreed to give in to his t-shirt demands while he agrees to wear pants that extend past his knees—at least whilst he is in public. He agrees to wear a coat as long as it doesn’t have to be zipped. I concede to turn up the heat and let him wear shorts in the house.

What is it about childhood and the freedom from restrictive clothes? The corsets and layers of clothes have long been relegated to the annals of history but I’m as likely to get my boys in a heavy sweatshirt as I am to broker peace in the Middle East. And my spectrummy son? Well, let’s just say that as soon as he walks in the door, underwear becomes highly fashionable.

A Better Life

2010-02-23T10:20:00.002-06:00

In the morning I try and write in the quiet after my children leave for school. I have a steaming cup of coffee by my side and an iPod playlist on high as the keyboard clicks away. It’s the calm after the storm {except right at this moment when the dog chases the cat through the living room and a glass of orange juice gets knocked over}.

Getting children ready for school requires skills that really only parents and the top military generals possess. There’s a flurry of socks and underwear and Pop-Tarts as the clock ticks down like a Doomsday scene in a movie. In our house, one child has a near meltdown over his clothing options (more on this later); one child complains about the chores; and another zones out completely as Spongebob plays on the TV. So you can imagine, as the quiet descends upon my house I have the opportunity to decompress and just breathe.

It’s in these quiet times that I take stock in what life has given me. Yes, my life can be hectic. My living room is collateral damage. I can be tired and stretched to the limit and yet, somehow, I find that moment when it all makes sense. That moment of peace and harmony when I can say without hesitation or reservation that I would not have it any other way.

It’s in those moments that I am connected to everything that matters and disconnected from everything that doesn’t.

This week, an incredibly crass Virginian politician stated that children with disabilities were God’s punishment for the sins of the mother. I was shocked and dismayed that a human being with a heart and soul could truly believe something like this. I don’t feel my son is God’s form of retribution, but rather, I feel he is my reward.

Sure, life can be challenging and at times, I have felt pushed to do and feel more than what I thought possible—as if someone pushed me in the deep end and said ‘Sink or Swim’. Somehow I have managed to keep my head above water and channel my inner Olympic Michael Phelps. And when you’re lost at sea, hope and blessing sure are hard to find. Like the sailor who searches for land, we search to find meaning and purpose. And unlike the ill-informed above politician, I know the purpose and meaning of my life and I can assure you it is not God’s equivalent of the Greek Sisyphus.

My children, ALL of my children, make me a better person and give me a better, richer, fuller life. Without them, I would not have the depth of character or the understanding of purpose. I grew up thinking ‘motherhood’ was not part of the greater plan for me; yet I find today that the cloak of motherhood fits me well. I know without a doubt that my life is better for the children I have in it, and Mr. Politician, that includes my special needs child. I don’t feel punished for the child God has given me. I feel blessed to be given the honor and privilege of being his mother. When I look in my son’s eyes, I see no penance—I see the most wondrous gift of all.

The Autism Condition

2010-02-17T12:20:00.001-06:00

Invariably, when I write about some aspect of our life with autism, my thoughts on autism, my feelings about some part of the autism life--someone out there reading it can identify with just about every word. I tend to look at this as The Autism Condition.

The Autism Condition includes:

Worry. Worry about our children. Worry about our family. Worry about our marriages. Worry about our own health. Most of us worry ourselves into some serious health related conditions. Which then leads us to think about our own mortality and thoughts of what will happen once I die. Who will be the champion for this child if I'm not there to do it?

Guilt. As I posted earlier, guilt is a monumental force in our lives. We feel guilt and agony over every decision we make--because the decisions we make are so much greater than the average decisions made by average families across the world. It's not about Charmin versus Angel Soft here. Every action and reaction can be felt for years to come in this child's life. Guilt and regret--twin forces of pain we deal with for a variety of reasons. The 'Did I do enough' and 'Can I do more' thoughts that will plague you the rest of your life.

Pain. Physical pain cannot hold a candle to the emotional pain experienced the first time a child calls your child 'retarded'. All the looks we get at the grocery store, restaurant, library, and any other public place comes to resonate in your brain till all you see are condescending glances and all you hear is well meaning but often misplaced advice.

Insomnia. Whether it's because your child is literally the sleepless wonder of the world or if you are left sleepless because of all the above. For most parents, the sleepless nights revolve around infancy--a relatively short period in our children's live. Our sleepless nights last a lifetime.

Joy. Utter and complete joy over the most simple of what life has to offer. A smile. A word, 'mom' or 'dad', spoken for the first time at age 5. A hug, freely given for the first time at age 10. A friend first made at age 12. The things forgotten by other parents are what we take such overwhelming joy in. We cherish and treasure those things in life that others simply gloss over. What other parents put in a baby book, we have permanently etched upon our hearts.

Thankfulness. Our day of thanks isn't just in November, we give thanks far more often. Thankful for all the fundamental elements of life our children teach us every day. We are simply put, better people for the children placed in our lives.

Hope. When doctors, therapists, educators, family members, and others have said there's nothing you can do--you still had hope. Enough hope to push through the boundaries and prejudices our children face to change his or her life for the better. When everyone else gave up, you got creative. You still believed. When everyone else said 'it can't be done', you said 'watch me'.

All these things make up the collective 'Autism Condition'. We all feel the same depth of despair and the same level of wonder and amazement. We all get tired and think there's just no way I can do another day. We all feel that rush to the head and the heart when that last ounce of perseverance is unearthed from the depths. We are all looking for that great pediatric dentist. It doesn't matter where your child falls on the autism spectrum, what his or her abilities are, or what specific label he or she has. It doesn't matter if your child is 24 months or 24 years, we are on the journey together. This is The Autism Condition.

The Guilt Trip

2010-02-11T06:40:00.003-06:00

Guilt. It's a common denominator in the lives of parents with autistic children.

We face guilt in the earliest of moments when we recognize something is not quite right. Did I not eat the right foods? Did I not sleep enough during pregnancy? What did I do wrong? Did I cause this?

We face guilt on the days when all we've done is think autism, autism, autism, and we've forgotten about the rest of the world. The world keeps spinning and yet it feels as if we don't. Stuck in the depths of grief and understanding, we emerge only to gasp for air before getting sucked back down under the waves.

We face guilt when our other children don't get the attention they need or the activities that they want to do. We struggle with balancing an equation that includes both a life with autism and a life of the neurotypical--with the scale almost always tipped toward the life with autism.

We face guilt when therapy has taken over every part of the day, every day. Guilt because therapy becomes intrusive and overwhelming and the clean house comes far second. Guilt because sometimes therapy becomes too much and we scale back--but always left wondering if we've done the right thing.

We face guilt when we think, 'Have I done enough?' or 'Could I have done more?' A lifetime left wondering if there was something else we could have done to help, to understand, to build skills and the promise of a better life.

We face guilt over the vacations lost, the jobs forgotten, the dreams changed and the priorities in life rearranged. The 'What Ifs' of life come crashing down around your ears.

Guilt is a part of grief. It's part of a natural cycle of understanding and acceptance. Guilt is a place we all must travel through, but hopefully a place we don't set up permanent residence in. Guilt is a challenge we must all endure and overcome in order to reach the next step, and the next and the next. Move past guilt and move toward hope. Remember that on The Guilt Trip, the next exit is Hope.

When we have to say 'why'

2010-02-10T12:00:00.002-06:00

Last night I had to tell my son he has autism.

It's a decision that my husband and I have struggled with for a long time. When and how to tell a child that they think differently and understand the world from a very different perspective.

Developmentally some children are not going to be able to process and understand what that information means until they are older. The level of self-awareness, emotional development, and language processing abilities all have to 'jive up' with what you are about to explain. We waited because we wanted things to jive up a bit more. Yet sometimes other parts of your life have a way of saying, 'it's time'.

In the past, we have merely told our son very generic things such as 'well sometimes you just think differently' or 'sometimes you see and hear things that the other kids can just tune out' or 'sometimes words can mean other things', and so on and so on. We never said why these things sometimes happened we just explained that it does.

Last night we had to explain why that it does.

It's not that we feel ashamed or embarrassed or that we feel he is cursed with a terrible affliction. Because we don't feel or believe any of that. He is who he is and we love who he is. He is a child with a pure heart and a passion for life. He is funny and more insightful than most adults I know. I am blessed with the privilege of being his mother, his guide, his teacher, and his advocate. He makes me a better person. Everyday he pushes me to do more, be more, think more, to love more, and to appreciate life more. He inspires me to higher levels of thought, perception, compassion, and understanding.

We feel that autism is a double edged sword--some things in life will be hard--really hard, and yet in other ways, autism will help him see the things we don't, comprehend things that we can't. Autism giveth and autism taketh away.

Yet we have always remained very positive and hopeful and because of that, I hope this transition to self-awareness and disclosure is just a natural step in the direction toward my son becoming his own champion. As you can imagine, autism is a word freely used in my house. A word that is always said in a spirit of hope and possibility. Even if I have never said to my son, 'hey you know are autistic' until last night (not the phrase I used by the way)--I hope he can see that we really do believe the world is a world of possibility for him.

Christopher Reeve said, 'Once you choose hope, anything is possible.' I choose hope.

The 'R' Word

2010-02-05T07:17:00.001-06:00

This week, an uproar in the disability and every other community sprang up over Rahm Emanuel’s use of the ‘R’ word. And in case you’ve been under a rock your whole life, by ‘R’ word, I mean retarded.

I’m a product of the 80s. In the 80s everything was either ‘awesome’ or ‘retarded’ so I have used this word in my life like any other Madonna lovin’, bangle wearin’ girl. Before I had my son I wondered why this word could inflame the public so much, especially when used towards inanimate objects as was so often done in the 80s—this TV is retarded, these shoes are retarded, that song is retarded. Before my son, I thought people should only get upset if someone said retarded to someone else.

That was before my son.

Over the years I’ve spent livin’ on the spectrum, I have come to realize that words have power and that words alone can change someone’s life for the better or for the worse. And I never realized it more than yesterday afternoon.

For the first time I heard another child call my son retarded.

My heart fell through the floor and my soul was burned in the fires of shock and horror. All the years of therapy, all the work, all the time and effort he had put into the last seven years of his life meant nothing in that moment. All the time trying to be part of society, all the time trying to a part of the community, meant nothing in that moment. He would always be an outsider to these people. An outlander. A stranger in his own land.

Words have meaning. Words have power. They have the power to destroy and decimate self-worth and an identity. They have the power to break your heart in two and render the world a lonely and unforgiving place.

The ‘R’ word is not just slang. The ‘R’ word represents hate and fear and prejudice. Yet we continue to accept it as part of American lexicon. Just as we have come to realize the words ‘nigger’, ‘spic’, ‘chink’, ‘kike’, or ‘mick’ as the derogatory racial and ethnic slurs that they are—we must come to realize the word retarded is indeed one of mankind’s most egregious slurs.

Do we say, "What is wrong with this nigger TV?" or "Oh those shoes are so spic." or "That song is so kike." No we don't. We have banished these words for the hate and prejudice they represent. It's time to banish the word retarded to the same bowels of hell.

Would many of us send our children where the adults and children said ‘nigger’ every day? I would hope none of us would send our children there. I would hope there would be an uproar worthy of a rebellion.

So why does the word ‘retarded’ not have that same taboo and not invoke that same passion?

Where is the ‘R’ word revolution?

There have been two times in my life that it took every ounce of strength in my body to let my son walk away from me and into the school building. The first time was in Kindergarten when he left school unbeknownst to staff. Taking him back after that incident required an incredible leap of faith on my part (among many other new school based requirements demanded by yours truly). The second time was this morning. Watching him get out of my car and walk into the building took everything. Every part of my heart. Every part of my soul. Every part of my being. And I’m not sure I’ll ever get those back.

Think before you speak. Think before you teach your children these things. Think before you break the spirit of another human being.

10 Minutes to Wapner

2010-01-25T22:32:00.002-06:00

Rainman was on the other day and of course, when it's on, I have to watch it.

It's funny, before my son was born I thought it was a good movie and certainly very fascinating, but that was it. Now, after having lived for 7 and a half years on the spectrum I have to say, this is one of my favorite movies. Not because it is the quintessential defining 'autism' movie, because it isn't. Rainman, or rather Kim Peek whom the movie is based upon, was a savant who also happened to be autistic. There are really only about a hundred recognized savants in the world which is a far cry from the current stats on autism--which can run anywhere from 1 in 150 to 1 in 96. Rather, it's one of my favorite movies because of the little things that show what life on the spectrum can be like.

The little things like the strict need for routine.

The 10 minutes to Wapner aspect is right on the money. I can't tell you how many times over the weekend I heard variations of, "It's 4 minutes to 4:30, time for dad to play Zelda with me." I kept waiting for Ewan to tell me he was an excellent driver.

But seriously, the autistic individual THRIVES on a schedule. Literally, life is better on a schedule for the person on the spectrum. Which is SO hard for me because I like to live life free of a schedule, free from an organizer, free from a planner. It's a constant struggle for me to accommodate Ewan and his 4 Minutes to 4:30 routine and my natural live life minute to minute kind of style. I swear my son has some sort of internal calendar or clock because without seeing this ANYWHERE in the house, he KNEW upon waking up that today he got to see Stacey, his SLP out at the hospital. We see her every other Monday and half the time I can barely remember WHICH Monday we go and have to write it down a hundred times lest I forget. Ewan, on the other hand, has it permanently etched upon his brain.

I love the part in Rainman when he asks the girl, "Are you taking any prescription medications?" I could totally see my son saying this to someone. He has a plethora of Ewanisms that I thoroughly enjoy. One time when he had a substitute bus driver, who happened to be elderly, Ewan blurted out, "How old ARE you? I think you are too old to drive this bus safely." That's life on the spectrum. Full of literalisms and potentially embarrasing moments for parents. Yet these are never said to embarras or ridicule, Ewan quite literally, just wants to know. Don't even get me started on the drug free campaign at school and it's aftermath...let's just say my son yelled out in a store, "Hey mom, I'm sober!" Yeah, that one elicited a few stares...

I love it when Rainman talks about Wheel of Fortune as he mimics, "Look at the studio filled with glorious merchandise. Fabulous and exciting prizes. Thousands of dollars in cash. Over $150,000 just waiting to be won as we present our big bonanza of cash on Wheel of Fortune." I can't tell you how many times Ewan has tried to get me to buy something off an infomercial. The Touch n Brush, the Snuggie, the Twin Draft Guards, the Perfect Brownie Bake Pan, the Big Top Cupcake, the Debbie Meyer Bags, the Slap Chop, you name it--he's ready to buy them all. He can tell you anytime, anywhere that the Touch n Brush dispenses the perfect amount every time for only $19.95!

And anyone who has ever spent 5 minutes with anyone on the spectrum knows that underwear is NOT underwear as Tom Cruise would have us believe.

PS...Kim Peek passed away on December 19, 2009. Kim was a great guy and was well loved by many, especially by his wonderfully dedicated father, Fran Peek.

You Spin Me Right Round

2010-01-25T22:30:00.004-06:00

This morning I struggle to sit at the desk and type. I struggle with this very simple task because the world is moving around when it shouldn’t. Vertigo has struck with a vengeance and my inner ear is a casualty in the war. We rarely think about our inner ear and our vestibular system, parts of the body just work and we never give it a first or second thought. We never give a moment of our time to think about sitting or standing or moving. We just do it. It’s only when they cease to function properly that we understand how intricate and complex the human body is. It’s only when these things cease to function that we understand how hard it is to do everyday tasks.

This week I have been eating meclizine (dramamine’s nasty tasting cousin) like it’s candy. I feel as if I’m stuck in the vortex of a vertigo tornado with a teeny tiny bitter pill as my sole lifeline to sanity. At this point, without the meclizine, I would likely be a 5 foot 8 inch ball of goo. Sitting up, walking, moving, bending, turning, and driving have been a struggle if not downright impossible at times over the past week. I’m so invested in controlling the vestibular part of my life that I’m distracted and exhausted. This vestibular foundation for everyday tasks is crumbling beneath my feet. Putting one foot in front of the other takes Herculean efforts and the rather mundane tasks of life have been thrown into disarray. Everything else in life has been put on hold while I cling by my fingernails to terra firma.

Today I am thinking of the child who perceives the world in a very different way. Today I can empathize with the child who has no hold on a world spinning out of control. Life moves on without me at the moment. I am waiting for the carousel to stop spinning so I can get on with everyday life but what about the child whose carousel never stops? Consider what life must be like for that child? Sitting at a desk, writing during English, calculating through math, running throughout PE, eating in the cafeteria, and holding a conversation become insurmountable burdens in an already overburdened life.

Think of this child in your classroom, in your home, in your clinic, or in your community and take a second to identify with this child’s life. His or her perception of the world is drastically different than your own. What comes naturally to you only comes to this child through an exhaustive struggle.

Noncompliance

2010-01-25T22:27:00.002-06:00

It seems that in the field of autism, there’s one word that tends to fray the nerves of Miss Lisha: noncompliance. In my book, the word ‘noncompliance’ is second only to the word ‘behavior’. Both of these terms mean little to nothing in the grand scheme of things. Behavior implies something happened and noncompliance implies you are a ‘My Way or The Highway’ kind of person. I imagine that Miss Lisha is noncompliant most of the day, everyday. I also imagine that the United States of America was founded by a group of noncompliant individuals. History, science, medicine, art, and music are often moved forward through the lives and thoughts of noncompliant people. Imagine if Galileo had been a compliant scientist? Noncompliant people tend to think differently—and as I’ve said a hundred times and I’ll say a hundred more, it’s always a good thing when we look at the world in a different light.

In the world of autism, noncompliance is not always a bad thing—if you understand the meaning of the behaviors behind it. If you find yourself using the words ‘noncompliance’ and ‘behavior’ too much, it’s time to re-evaluate how you look at the world.

Everyday, every single day, someone tells me about how horrible the behaviors are for a child they work with or live with. Behaviors rarely happen for no reason. Behaviors are communicating something, even if you don’t understand what that something is. A child with autism doesn’t wake up every morning thinking of ways to undermine your life. A child with autism wakes up every day and wonders how he’ll make it through in one piece. Behaviors have meaning. If we choose to ignore that meaning, we do so at the risk of misunderstanding the situation and the child, thus helping no one.

If you can’t express your thoughts and you rarely understand your own internal environment, it’s down right impossible to rationally sit down with someone else and discuss your problems. When you can’t communicate with your mouth or with your hands, you’ll find a way to communicate and I can assure you it is rarely appropriate in polite society. If you duct tape my mouth and if you tie my hands and if you hand me a Diet Pepsi instead of a Diet Coke, believe me I will try and kick your kneecaps right off in an attempt to communicate that I much prefer the Diet Coke. Behaviors are telling you a story. Behaviors tell you that I want or don’t want something. The behaviors tell you that I can’t handle this. The behaviors tell you that this hurts me. As others before me have said, it is not a “will not issue” with these children, it is a “cannot issue.” The child who is kicking and screaming and biting is saying I CANNOT do this—it may hurt, it may be overwhelming, it may be confusing and whatever it may be, it sure as heck is not OK.

Let’s take a child in a preschool classroom who is being asked to participate in a game of ring around the rosie. Sounds innocent enough right? Maybe, maybe not. There’s singing, there’s physical touch, there’s side to side and circular movement—all things that can send an autistic individual into the upper atmosphere. If you experience this in a much more traumatic manner than the next child, you will run away. You will refuse to participate. You will cry and scream if dragged to the circle. You will be noncompliant. This noncompliance means we have a child who understands him or herself. This noncompliance means we have a child communicating with us. We can either choose to respect the message given by the noncompliant child or we can choose to force the noncompliant child into what he or she perceives as a dangerous situation. Think of the message that you send to the child with autism as you force him or her to participate in an activity he or she finds threatening. No means no except when you say it. This message is most assuredly not a positive one.

If you find yourself with a consistently noncompliant child, I can guarantee you that the child is not the problem—you are. Throw the word ‘noncompliance’ out of your vocabulary and begin to help the child be successful. I leave you with a final thought, in the words of Mahatma Ghandi, “You must be the change you want to see in the world.”

Basics of Care

2010-01-10T19:22:00.001-06:00

When it comes to autism everyone has an opinion. Everyone has a cure, a treatment, a methodology, or a belief system. When it comes to autism someone always thinks he or she is right. When it comes to autism someone always thinks they know what the autistic person is thinking or feeling. When it comes to autism someone always knows best.

The reality is that autism is multi-faceted and dynamic. The reality is that autism truly is a spectrum. Jack and Jill are very rarely similar. The reality is that we guess as often as we know. The reality is often based on a series of assumptions and ingrained beliefs, which are often painfully outdated. The reality is that autism isn't easy. Just when you think you've figured it all out, the world shifts and we all have to start from scratch. What worked on Monday, often doesn't work on Tuesday. Adaptation is crucial.

Autism requires you to give everything you have everyday. Autism throws you in the deep end and says sink or swim. Autism expects you to be ever bit as multi-faceted and dynamic as it is. Autism demands a level of intellectual curiousity and an ability to find the answers when none are obvious.

The reality is that we often find people working with or living with an autistic person who want the easy way out. They want the magic wand that with a flick of a wrist will have a child talking, eating, and socializing as any other chid might. I know I wanted the magic wand and sought to find quick and easy solutions to my son's eating problems. I know I wanted him to speak and I wanted him to speak NOW. Yet autism works at its own pace and in its own time. All children develop differently, and this holds especially true for the autistic.

A common misconception about autism is that there is no hope and that there is no progress. Those with autism absolutely continue to develop and grow and mature, but these children do it to the beat of their own internal drummer that sets a pace apart from our own. We have but to stop and listen in order to hear it.

Too often, those who live with and work with autistics talk too much. They talk to cover the silence, they talk to encourage cognitive abilities, they talk in order to model verbal speech. Yet in working or living with the autistic, one must listen more than they speak. One must observe more than they do. Of all the tools one can have in understanding an autistic individual, the greatest are your own two eyes. Most tend to downplay the importance of observation, mostly because they are doing it wrong. To do it right, one must throw every sense and thought into the other person. I cannot tell you how many times I've gone to observe someone only to be bombarded with thoughts and questions by the adults in the room. Observation is difficult and it takes a lot of practice to get it right. Observation is about perspective and finding yourself and your thoughts in someone else's shoes. What is he seeing? What is she smelling? What is he hearing? What is she feeling and experiencing that I'm not? Observation is the ultimate test of the knowledge you have accumulated over the years and in a variety of disciplines.

The fact of the matter is that no one person always has all the answers and there is no magic wand with an easy way out. No one person can know everything there is to know about autism itself, or the person who has it. If you hope to work with or be with an autistic individual, expect to interact with a variety of different people in a wide assortment of disciplines. Autism is pervasive. Autism colors every thought, experience, and interaction. Just when you think you've figured autism out, the whole picture changes. We can either change and adapt with that picture or we can be left behind.

One pet peeve Miss Lisha has are the 'My Way or The Highway' individuals who work with or live with autistics. The 'My Way or The Highway' crowd tend to be as neurologically inflexible as the people they work or live with. They may even have their own autistic traits. The autistic is often neurologically incapable of the change we are asking of and yet the neurotypicals tend to keep push, push, pushing for the tide to turn in their favor. When we ask for change, we must also be prepared to make our own. These unyielding types seem to be on a mission to break the spirit of the autistic person and that's the last thing anyone should want. Autistic individuals tend to see the world in a way we do not. And that is a very good thing. It's high time we started working WITH this rather than AGAINST it.

Success is not measured on how many times out of 100 a child put the puzzle piece in the right spot. Success is not measured in percentages. Success is not measured in numbers or on paper or in an IEP or in a doctor's office. Success is measured by the quality of life an individual has.

Quality of life is tricky. It cannot be graphed. It cannot be quantified. It cannot be charted. Published research is a bit more scant in this area. It's down right difficult to imagine the measures to determine the quality of someone else's life. Especially when this individual doesn't communicate the same way everyone else does and has sensory experiences that are radically different from the norm. How can we determine the quality of life for an individual who does not speak? How can we determine the quality of life for an individual who feels and experiences life in ways neurotypicals can scarcely begin to understand? Quality of life has very little uniformity to it. What makes my quality of life better will not be the same for you.

We must continue to push the envelope in the standard and basics of care for people with autism. We must expect more out of ourselves as we attempt to understand the world of the autistic. We must be willing to work as hard as the individual with autism does, and that's a pretty high standard. Good enough just isn't good enough anymore.

Death and the Autist

2009-12-21T21:34:00.001-06:00

Today I had to tell my children that their great grandmother had died.

My grandmother, Pauline, was likely one of the toughest women I've ever met. This was a woman who had lived with severe Rheumatoid Arthritis for well over forty years of her life. Her fingers, twisted and gnarled, were the casualties in a life long autoimmune war running rampage through her cells, joints, and tissues. Pauline was also likely the most stubborn woman I've ever met, and that includes me. She simply refused to give up on life, even when everyone else had. She had been fighting the good fight for many a year and today she simply couldn't fight any longer. I pray that she finds peace tonight in the comforting arms of a higher power.

Tonight, I alternate between laughing at the memories and weeping with the overwhelming sadness. I weep for my grandfather, who after 62 years of marriage, lies alone tonight in his grief. As I vacillate between smiling and crying, I catch the attention of my two younger children. My oldest, is now 14 and was very close to this grandparent and has been grieving all week for what we all knew was coming, as sure as the sun rises in the east. My two boys though, have remained blissfully ignorant of the stress and sadness we have felt the past two weeks.

That is, until today.

As I sat on the couch, staring at the wall today Ewan came over and asked what I was doing. I told him I was sad and just thinking. When he asked why, I decided to sit down with the boys and tell them. As I told them their Grandma Pauline had died, they both said, 'Oh you mean she went to the graveyard.' Yes, I replied, her body is in the graveyard, but her soul goes on to Heaven. Vaughn (my typical 5 year old) immediately wanted to know if her skeleton was going to come out of the graveyard and get him; to which I replied, "No, her skeleton will stay put...and have you been watching the Spongebob episode with the Health Inspector again?" With a sheepish grin on his face, he said, "Yep."

Ewan kept looking at me funny though, a little perplexed if you will. I asked him if he was ok and he asked, "Mom, if you are so sad, why don't I see tears?" I realized in that instant, that all the social skills programs in the world cannot prepare a child with autism for some of the complexities of life. I then had to explain that sometimes we are so sad, that tears no longer come and the sadness stays inside and makes your heart ache and your soul suffers for the loss of someone you love. Heaven, God, souls, and the afterlife are not things that Ewan really gets. Of course, not many 7 year old boys get these concepts. But for Ewan, it is too abstract for him, and may always remain an elusive mystery. Though I hope and pray that someday, he might understand and believe.

Most people tend to think that those with autism lack empathy. I am of the mind that they do not lack empathy altogether, but rather have the Herculean task of expressing the feelings brought forth in an overwhelming situation. Tonight, Ewan asked me what he could do to make me feel better. I told him the only thing that can help me feel better is time. He said, 'Oh you mean at 5:30?' Ummm, no much longer than that I had to explain. Then he smiled and perked up all the sudden and said, 'Mom! I know what will make you feel better! A Diet Coke!'

Oh how that boy knows me. And certainly, as Ewan faithfully made me an icy Diet Coke and delivered it with a hug and a smile I certainly felt as if the world made sense once again.

Miss Lisha's Rules to Working with Children

2009-12-18T21:43:00.002-06:00

Lately, my thoughts have been consumed with worry for my grandparents. One in the ICU (again) and the other just recently diagnosed with Alzheimer’s. I have been consumed with thoughts about quality of life and responsible care for them both. I have also been thinking about the similarities between my grandfather’s Alzheimer’s and many of the same difficulties people with autism face. I see how the same strategies to help with cognitive and executive functioning ability that help our autistic children can also benefit the adult with Alzheimer’s. But, of course, there are many differences.

One of these differences is respect. Another is dignity.

Whether it’s people in the community or health care professionals or law enforcement—they all have a very healthy respect for an individual’s rights and are very cognizant of the importance of dignity. At times this week, I have felt as if my hands were tied because of the extremes our legal and health care system goes to in order to protect the rights of an individual. This morning however, I am thinking about the children I am blessed to know and I am left wondering why we fail to have the same level of respect for our children as we do our adults.

Too many times I see children who have been denied the very things we cherish and uphold for the adults in this country: respect and dignity.

Too often, I see adults who treat children in ways that often leave me speechless. So I have decided to come up with what I call “Miss Lisha’s Rules to Working with Children”.

Rule Number One: Do unto children ONLY as you would do unto yourself or other adults. Whatever you are doing with a child, please imagine yourself doing it to another adult and if you find yourself thinking that it would be ridiculous to treat an adult in this manner—then guess what, it’s probably ridiculous to treat the child that way too. Respect and dignity should be the cornerstones of every thought and action.

Rule Number Two: Respect the fact that children do not believe you are the Almighty. Children were not put on earth for you to move about like chess pieces. They have their own minds, their own thoughts, their own feelings and invariably these will not match with your own mind, your own thoughts, and your own feelings. The last thing we want is to raise a generation of ‘yes’ men and women. Our children need to learn to speak and think and feel for themselves and to stand up for themselves when no one else will. I want to see a generation of children who will push the envelope in ways we never dreamed of.

Rule Number Three: Understand the fact that if you work with children, if you teach children, if you provide therapy to children, if you provide medical services to children that the child works harder than YOU do in all aspects. You do not get to take all the credit for a child’s accomplishments.

Rule Number Four: Remember that you are most likely 5 feet tall or above as an adult and children are much smaller. If you want to hold a conversation with a child, bend down and be on that child’s level. Nothing irritates me more than to see an adult standing at 5 feet 8 inches tall staring down at a sea of little heads and speaking as if talking to a colony of ants. Again, you are not the Almighty and these children are not your devoted worshippers.

Rule Number Five: Remember that you, as an adult, are there to guide the child to becoming an adult. You are there to provide the tools a child will need for a lifetime. You are there to help a child learn how to navigate the world. Understand that you, as the adult, are not omnificent. You do not know everything there is to know in this life. Remember that as an adult, you do not stop learning. Remember that in order to help and guide a child, that you too must learn something new every single day of your life.

Addendum: Miss Lisha’s Extra Rules to Working with Special Needs Children:

Rule Number One: Primum Non Nocere. First do no harm. This does not apply only to physicians. This oath belongs to us all. Remember that sometimes, the cure is worse than the ill. Ask yourself if you are truly helping the child in front of you or if you are merely going down a checklist you learned in graduate school. Children are not checklists. Children are not textbooks. Children are living, breathing, learning beings that you do not simply get to experiment with. You must always think Primum Non Nocere every day you work with this child. Every single day. Every single action. Every single thought. First do no harm.

Rule Number Two: All children are different. All children learn at a different rate and pace and style. This too, applies to the special needs child. There is no ONE way to do anything. There is no ONE way to help the child to learn, to speak, to live. You must learn to integrate and utilize ALL the treatment and educational methods in order to truly help the child. If you stick with ONE method, you are taking the easy way out. If you want an easy way out, an easy way to teach, and an easy to treat—work with hamsters, don’t work with children.

Rule Number Three: If you wouldn’t try something with a typically developing child, ask yourself should I really by trying this with an atypically developing child. Ask yourself if you respect this child. If the answer is no, go back to working with the hamsters my friend.

Rule Number Four: You do not know everything. You must seek help. You must accept help from other professionals. If you are a teacher, accept help from the therapists. If you are speech pathologist, accept help from the occupational therapists. If you are an occupational therapist, accept help from the speech pathologists. If you are a doctor, listen to the educators and therapists. You are not omnificent. If you think you know everything there is to know and do not need to learn anything new, please go directly to PetSmart and purchase a hamster--I hear they are on sale this week.

Rule Number Five: No one, and I mean no one, works harder than the special needs child. You can’t possibly fathom what life is like from their perspective. Do NOT assume that you understand or know what the child is feeling or thinking. Do NOT take credit for what the child has learned to do—it isn’t about you, it’s about the child. If you want a life that is all about you, go back to the hamsters, I hear they make adoring pets.

Above all else, and this applies to ALL children, remember that it is a privilege to work with a child. A privilege that you get to enjoy as long as you continue to respect that child; and a privilege that can be revoked if you don't.

From Autism to Alzheimer’s: My Life With a Brain

2009-12-13T11:22:00.005-06:00

This week I have come to the realization that everything happens for a reason.

Seven years ago, my son was born and within the first year we realized things were a bit different for him. When he was 14 months old, early intervention came to our house and screened him for delays in development and quickly started speech therapy, occupational therapy, and developmental therapy among other things.

My life changed in a brief instant.

In one moment, we were much like any other family, albeit a struggling family, but we came and went as we pleased and had the control to say what was going to happen today, tomorrow, and the next day. We had freedom. In the next moment, we had therapists coming to the home almost every day. We had doctor appointments just about every week. That freedom and ‘go with the flow life’ went right on out the window. While we didn’t sign up for that kind of life, we quickly realized that sometimes the hardest thing and the right thing are the same. We saw first hand how important this new lifestyle was for our son. We saw how much improvement he could make with help. We saw how we could build his skills by using pictures, sign language, and how changes in the home environment, or playing a little differently, and living a little differently could impact his life. We did all these things to improve his skills and his quality of life.

My husband and I began to understand how our son’s brain worked and how he saw the world and understood it. We learned as much as we could about how his brain learned to problem solve, how his brain learned to make connections, how his brain learned to communicate and reach out to others. The frontal lobe became the focal point for understanding how our son made sense of the world. All the sequencing difficulties, all the problem solving skills, all the language processing issues, all the planning skills, all the language comprehension skills, all the decision making skills—ALL of these things are wrapped up in that frontal lobe.

As I went along in my quest to understand autism, the world branched out from the frontal lobe to parts of the brain like the amygdala, the fear and emotional center of the brain. Learning to recognize and maintain stability between an even keel and fight or flight became crucial. Understanding how my son perceived the world helped me realize that his fear center was a bit on overdrive. Understanding how my son perceived emotions in himself and others guided his therapists and me to focus on emotions and facial expressions and to think long term in regards to social skills programs for him.

The tour of the brain continued along to places like the middle and inferior temporal gyri where more language processing occurs along with visual perception and the integration of information of all the senses comes into play. This became crucial as I understood how my son preferred objects to human faces and processed those faces, how this affected his word retrieval abilities as he began to learn to speak on his own, how my son categorized items and objects, or how my son handled sensory integration.

The brain became the center of my solar system.

Through learning about how my son’s brain worked and how it perceived the world helped me help him have a life of limitless possibilities. I learned to provide him with tools and strategies that promoted independent sequencing skills, problem solving abilities, and his decision making capacity. All the visual strategies we used to increase expressive and receptive language abilities, the sequencing strips, and the social stories seemed to be a constant in my life. We worked on recognizing faces and interpreting facial expressions. We worked on categorizing items over and over and over. We built up his tolerance and ability to handle sensory information in the environment. We worked on handling stress and dealing with extremes in emotions—learning to take a deep breath was a constant for us all. My living room and my life looked like a therapy center.

Over the years we have become pros at all this. The shock wore off and this new life became our regular life. Abnormal became normal. We grew and thrived together as a family, as a whole until all of this just became instinctual. I can whip out Boardmaker symbols faster than most speech pathologists. I can program a high tech communication device faster than most of the programmers at Dynavox. I can produce a social story faster than Carol Gray herself. I’ve got as many sensory ideas as Jean Ayres at this point. I’ve learned to handle all the hiccups in life the brain with autism could produce.

My life with a brain has come full circle though.

Just yesterday, my grandfather was diagnosed with Alzheimer’s. I am learning how to handle a life the brain with Alzheimer’s can wreak havoc on. I am back to thinking about what visuals need to be used. Back to thinking what kind of schedules need to be placed around the house. Back to thinking about sequencing strips and how to problem solve through all of life’s daily tasks. And of course, now beginning to wonder what kind of help will he need remembering where he is in time and space.

Believe it or not, my life with autism has been a God-send in helping me understand the life with Alzheimer’s. This morning, I thank the Lord for giving me the opportunity to live with and work with individuals with autism—it has saved my sanity for taking the first steps to a life with Alzheimer’s. The last few years of repetitive statements and questions from my ‘auties’ helped me make it through the last few days with grace, patience, and respect for my grandfather’s need to tell me the same story over and over and over.

To be honest, I’m shocked at how similar the two can be at times. The same monitoring programs I have recommended for our wandering children with autism are the exact same ones being used for those with Alzheimer’s. The same visual and cognitive supports to promote independence and problem solving abilities are used in both autism and Alzheimer’s. While the brain with Alzheimer’s and the brain with autism are very different, the strategies to promote independence and improve quality of life can be eerily similar. Managing tasks, changing and arranging the environment, dealing with emotions, providing that crucial routine, and understanding and interpreting behaviors have all become crucial points in not only my son’s life; but now also in my grandfather’s life.

Yesterday, I had to take my grandfather’s car keys away. In a moment, his life changed from a life of freedom and independence to one which will require more and more support through the next few months and years. In a moment, his life has been irrevocably changed with the A word. The grieving process has begun for us all. I grieve for his past, his present, and his future. He grieves for an entire life that has changed and been lost. I’ve had more difficult conversations in the last few days than I can ever remember having. But sometimes the hardest thing and the right thing are the same.

The Spaces in Between

2009-09-25T00:21:00.004-05:00

It's midnight and all is quiet in my house. No televisions, no phones, no children running, no boys wrestling, and no blaring sounds from the daughter's iPod. It's times like these that I get to sit back, take that deep breath down to my toes and reflect upon the day and direction of our lives. My friend Cheri, feeding phenom / mother / writer / and all around great gal, wrote on Family Care and the special needs child last week. Families raising special needs children are different. We are just plain different. Our days, our nights, our fears, and our triumphs are so very different. We might be ecstatic over a bite of a sandwich. Intoxicated by the sound of a new word or phrase by a six year old. Captivated by the child who makes his first friend at fourteen. The world turns in a very unconventional manner for us, but it turns nonetheless.

For us, our very lives are often driven by therapy appointments, doctor visits, special foods, special equipment, special everything. The clock speeds up as we rush from place to place in an attempt to put the world on an even keel once again. The old adage, "Stop and smell the roses" takes on a whole new meaning for us.

Tonight, in the quiet of my room, I think about the spaces in between. I am inspired by Anthony Bourdain surprisingly. In a recent show he was in Japan learning the ancient art of ikebana, or flower arrangement, of all things. Japanese flower arrangement focuses less on the breathtaking beauty of the flowers themselves and more on the balance between the flowers and the space around them. A bouquet from an American florist would look mighty different than one based off the principles of ikebana. The normal bouquet is packed so tightly with flowers and greenery that no space is discernible from one bloom to the next. The Japanese arrangement almost seems sparce in comparison, and the focus is drawn to the beauty and harmony of the flowers with the surroundings.

Tonight, I'm looking for the beauty and the harmony in all things. Tonight, I am looking for the spaces in between. The spaces in between doctor visits, long trips in the car to yet another specialist, between trips to this therapist and that therapist, and the constant hum of pushing ourselves to do more, to be more, and to find more. The spaces in between often matter far more than any of the above.

My son has been to more specialists than I care to count. Been tested too often to remember. Sat in more waiting room chairs than most will see in a lifetime. Seen more PECS symbols than can fill a warehouse. Heard enough social stories to deafen a small country. These have been a part of our life for as long as I can remember but it's hard to remember the times we weren't running, we weren't pushing, we weren't here, there, and everywhere. It's hard to remember the quiet times. The times when we did absolutely nothing and merely enjoyed the silence together.

I believe they each have a place in the life of the special family. Yes, the doctors, the therapists, the testing, the push, push, push is a fact of life--but the quiet times must also have their place. The spaces in between sometimes matter more to the health and vitality of a family struggling to simply breath in and breath out. Struggling to make it through the day only to do it all over again as the sun rises.

Stop and take some time to simply BE. Be together with no expectations, no intentions, no agendas, and no anticipation of what comes next. Find the space in between and embrace the calm before the storm.

Into the rabbit hole

2009-07-09T23:09:00.004-05:00

Much like Alice, Miss Lisha has fallen down the rabbit hole and into what feels like winter right in the middle of summer. I feel a bit bleached and worn through from the inside out--almost as if my self, my soul has been stretched too thin. Why is it that I cannot shut out the pain, push through it, and find the other side? How I wish I were more like Lance Armstrong as he said, "Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever." I hope that tomorrow brings with it a new perspective and a new hope. Surely this cannot hold me hostage much longer. I hope the burning {wo}man will but rest for awhile, quench the fires in my veins, and let me breathe again.

Chronic pain for anyone is a tough pill to swallow. It's something I talk about a lot in life and on this blog. Pain is truly an experience, that only the bearer can ever fully know and endure through. I've watched my son struggle with understanding pain, to put words to it, and learn to control it so that it doesn't control him. He is such a strong child to have done all that he has, lived through all that he has at only seven years, and still jump out of bed with a smile (although not early mind you, Ewan is not an early riser!). I love that Ewan can come out of anesthesia and the first thing he tells me is that 'crap is a funny word'. This is why I giggle when I make up words like 'crapitude' only to see that smile light up his face.

Ewan has had years of therapy visits for all kinds of things, including learning how to eat, how to want to eat, how to enjoy food. Most people don't think about eating or how all consuming that food really is in our lives. For Ewan and for us as his parents, we've always had to think about 3 meals, 2 snacks, drinks, food, food, food--what can we get, what can we serve, what will he eat, and how can we get him to eat it and love food the way we do--every single day of his life. It is a burden not many truly understand and even fewer know how to treat. I am thankful though, to see how Ewan has grown and learned to enjoy the things he loves and how to manage the things he cannot. He perseveres far beyond the confines he was born with and gives me hope that so much can be gained by trusting in others and pushing into the limitless unknown.

So I look to Ewan and all the other children and adults like him for hope; to those who know no limits, no boundaries, no confines, no barriers or obstacles--to those who walk and breathe and live in the face of overwhelming pain.

For tonight, I will think of Elizabeth Barrett Browning when she wrote, "I would rather hope (as I do) that what I lost by one chance I may recover by some future one. Winters shut me up as they do a dormouse's eyes; in the spring, we shall see: and I am so much better that I seem turning round to the outward world again."

Great Hopes and Expectations

2009-07-08T21:45:00.004-05:00

What is it about a doctor’s appointment that we put so much hope and expectation into it?

I’ve been fairly ill, or at the least, not well at all the last few months. What started out as something akin to doing too much has twisted into the world turned upside down for me. The world is certainly not right from where I sit—33 year olds should not have a cane as a fashion accessory. So when I had to stop the world and get off, the first place I headed was my doctor’s office—as it will, one doctor’s office has turned into a multitude of them. Each visit plagued and burdened with all my great hopes and expectations of walking out with a quick fix and the notion of ‘let me be on my merry way’ again. Each one left me more dejected and alone than the one before.

Why is it that so very much goes into this process?

Over the last two months, I have faced the unknown. Faced the terrifying thought of ALS and the years of my life measured in months rather than decades. Faced the idea that some things cannot be put right again. I have sat in a doctor’s office and cried, begged, and pleaded for anything to put the world right again—only at times, to see the backside of a coat walking out the door.

From beginning to where I sit now, I have had soaring hopes for those I reached out to for treatment to all out anguish and agony over not finding an answer. I have cursed those who sought to help me simply because there wasn’t an answer.

In the middle of all this, my middle child, Ewan went in for a ‘state of the state’ kind of appointment with an EE clinic (eosinophilic esophagitis / EE). Again, my hopes were through the roof that we would get a break from the weight of the world in the form of his restricted diet. As my husband and I watched our son drift slowly into the unhealthily thin area, we again bargained with everything we had to get him to eat and to want to eat. Ewan’s relationship with food and eating has always been complex—it has never once been easy and uninhibited. Every bite, every swallow, every attempt at eating has been gained by only the greatest of efforts. He has had bad times, good times, and even some great ones—but none of them have been easy for him. He faces the task of eating with not only EE, the painful disorder of his esophagus, but also that of a child with autism spectrum disorder. His sensory experiences are not the same as mine—he is not interpreting the world in the same manner as I.

Ewan has gone from eating just a handful of foods to eating a wide variety through Food Chaining with help from some of the most talented individuals I have ever had the pleasure of knowing. But what he faced this time seemed different, seemed as if some part of his brain clicked on and overshadowed all the work we had done. He just didn’t seem interested at all in any of it. If this is the face of anorexia, I hope to never see it again in all my life. As a last ditch effort, we decided to embark on another series of visits with the EE clinic—again hoping against all hope that we would drive 4 hours to return with the world in our hands. Great hopes and expectations to be sure.

Again, we seemed to hope for too much—the easy answer just wasn’t meant to be. We were not looking forward to another round of scoping and biopsying—we had done our time with that and didn’t want to go back just yet. We left feeling adrift, alone, and disillusioned with the whole world. It seems you are never as alone as when you’re walking out of the appointment room to an empty car and a long drive home.

Mercifully, Ewan has a wonderful team already in place and we went back to square one and thought about what is some alternative route that we could try. Swallowed Flovent became our saving grace for Ewan. Although he has done extraordinarily well with the dietary restrictions of EE, he had lost all interest in eating and we needed an ace in the hole to get him back to the table. Flovent has given Ewan his appetite back. His curiosity in food and eating has been piqued again. It is pure enjoyment to hear him ask for food, to ask if he can try a bite and knowing, even for this short period, that we can say yes without looking once at the ingredient list. Flovent has saved us all and has restored my sanity for the time being. I will never in all my life be able to repay Dr. Fishbein, Cheri, Stacey, and Sibyl, for all that they have done for this child. My debt of gratitude to them is greater than I can possibly explain.

As for me, I feel as if the path is beginning to open up a bit again. I was able to sit down with my family doctor—MY doctor, not a specialist, not some unknown person and tell him all my fears and all my expectations and everything that I seemed to have lost. A conversation as old as time has begun again and I have faith that between his guiding hand and that of a higher power, I will once again return to my old self.

I have no answers about why great hopes and expectations are so high for those who care for us. I have no inspirational words of wisdom about coming to grips with any affliction, pain, or illness. I am left only with the idea that healing comes from many places—from deep inside the soul and from the compassion of those with the knowledge to heal. As alone and rejected as I have felt over the last few weeks from those who seek to heal us, it pales in comparison to the prayers I have received from scores of people I’ve never met. It pales in comparison to the compassion from my own doctor to recognize that while there may be no fast and easy answer, we’ll walk that road together.

Can I take your order?

2009-05-16T19:00:00.003-05:00

So we are at lunch today and the waitress comes to take our order and as she leaves, Ewan turns and says, “I think her name is Deb.” I asked him, “How do you know her, has she been at your school?” To which Ewan replied, “Mooooommmmm, she’s wearing a name tag,” as if to say, duh mom. The best part though is when the waitress returns. Ewan looks up, smiles, and says, “Hi Deb!” as if he has known her his whole life. Of course, ‘Deb’ lights up and flashes Ewan a bright smile and asks his name and continues the conversation.

Ewan can have this affect on people. He’s just so, well, Ewan. For some reason, the way he sees the world is just so wonderfully simple. The best part about Ewan is that he’s not trying to be cute or funny, it just happens as naturally as he breathes air. I’ve always thought that for Ewan, he lacked so much of the intuition that other children are born with. That intuition we use to understand a situation, to navigate an experience, or how to handle the pitfalls in life. And yes, these parts of life do not come naturally to him. But other aspects of his life are more intuitive than one can possibly imagine.

As we leave the restaurant, Ewan flashes a big smile at our waitress, waves, and shouts out, “Bye Deb!” It’s a smile that you feel down to your toes.

Vacuum cleaners and all that

2009-04-23T21:51:00.005-05:00

Obsessions can be a real interesting ride. My autie has had quite the obsessions over the years from volcanoes to spiders to tractors to space to plants to now vacuum cleaner attachments. Yes, that's right, vacuum cleaner attachments.

We took a little trip the other day to get out of the house and relax. Packed the kids up in the car and we all took off for lunch. We made sure the boys had plenty to fidgit with and they were armed with Gameboys and toys. Only Ewan decided a 'must have' item included a harmless little black vacuum cleaner attachment that he used as his 'stylus' for the Gameboy.

Harmless. Uh huh.

So we get to a restaurant that isn't too packed for a Sunday afternoon and wrestle the kids out of the carseats and inside. We get a seat, order, and are on the verge of relaxing into the booth seats when Ewan exclaims, "Where's my vacuum piece? Where? Where is it?"

He asked our neighbors to the left and to the right if they have seen this inocuous piece of cleaning hardware. He asked the waitress if she had seen that spiffy crevice tool anywhere. He suspiciously eyed the cleaning crew and not so subtly implied that they had stolen his janitorial apparatus. He asked people just walking in to the restaurant if they had seen that crafty crevice instrument in the parking lot.

By this point, my husband and I were scouring the ends of the earth for this infamous piece of my son's life. The world stops when things like this pop up and we were determined to keep the world spinning even if that meant lifting a crevice tool from the restaurant's cleaning crew.

Then the sun broke forth from the clouds and shone down on my lovely husband as he yelled forth from across the sea of confused diners to shout, "I found it! I got it! Here's Ewan's vacuum tool!" Such is life. Vacuum cleaners and all.

I wouldn't have it any other way.

It Is What It Is

2009-02-21T08:59:00.004-06:00

Two nights ago I did a presentation on Autism and Discipline for the local support group. This morning, I am vividly reminded about everything I talked about that night. It's barely 9 am on a Saturday morning and already the boys are at it. Ewan and his brother are attempting to recreate the World Wide Wrestling Federation matches of the 80s in my living room.

Why you might ask?

Because Vaughn said he was holding a fire stick and pretending he was in a cave when Ewan said quite loudly and with much authority, "It is a PENCIL with a BIG eraser Vaughn. It's not a fire stick. And my room is just a room, THERE IS NO CAVE!"

His brother did not like this bucket of cold water reality thrown on to his imaginative state of being and thus decided to jump on Ewan's head.

Two worlds often collide with Ewan and Vaughn--reality and imagination. Vaughn is filled to the brim with imaginative ability and pretend play. His whole life, every day, from sun up to sun down is filled with pretend. Objects becoming something other than what they really are. Pencils becoming fire sticks, rooms becoming caves, all set to a variety of sound effects and conversation emanating from Mr. Vaughn.

But for Ewan, a pencil is a pencil. It can never be a fire stick. He is the yen to Vaughn's yang. For Ewan, objects are what they are, it is what it is and nothing more. It's all actually very simple according to Ewan--why go about complicating matters by saying something that's not true?

Discipline in this situation must guide Ewan to understand that Vaughn sees the world differently than he. This is a hard sell for someone so grounded to reality. In the end, we have to teach Ewan that it's ok if his brother wants to call a pencil a fire stick and a room a cave and that's a long discussion indeed.

*In ASD, children use objects functionally rather than to symbolically represent something else. So a pencil is a pencil and nothing else. By 18 months of age children should be using objects as symbols for something else and it would be considered a red flag if a child age 18 months to 36 months fails to develop this type of representational or symbolic play.

What do you know about autism?

2009-02-04T14:43:00.009-06:00

When you think of autism, what is the first thing you think of? Do you think of Rainman and Dustin Hoffman? Do you think of an institution? Most people have an 'imprint' of what autism means to them and it's not always the reality of autism.

Most people think 'nonverbal' when they think of autism. They think this person will not be able to live life independently. They think this person will not be affectionate. They think this person does not have empathy for others. They think this person will never make eye contact. They think of this as a shell of a human being.

The truth is that autism is different in every person. The truth is that while 30-40% of those with autism will fail to develop functional speech, that means the 60-70% WILL. The majority of people with autism do have some or a lot of speech, although it may sound odd, may be be very literal, concrete, or blunt. If a person is not verbally communicating, it's time to push other forms of communication--that means sign language, symbols, high tech devices. Don't ever assume that someone with autism does not WANT to communicate or wouldn't know how to learn augmentative forms of communication!

The truth is that many individuals with autism may need help and coping skills to live independently. I know many invididuals with Asperger's syndrome who can create the most intricate and complex computer systems you have ever seen, but not know how to make a sandwich. These are the tasks they made need help with. The every day, daily tasks that we take for granted, that we assume are easy. These tasks can be very challenging, but they can be done given some coping mechanisms. The truth is, their life can be very rewarding and fulfiling--but it may not be what we think they should be doing. Their priorities are not our priorities.

The truth is that many of our children and adults with autism are very affectionate--but on their own terms. Think of it like this: all cats are just autistic dogs! ;) Cats come to YOU when THEY need you, when they want you, when they need love. Children and adults with autism are very similar, they come to you, they set the rules, they set the boundaries--we just need to recognize and respect that.

The truth is that many of our children and adults with autism experience emotions and empathy in an almost overwhelming fashion and they have difficulty expressing and understanding what is happening. It's not that empathy is completely void in them--it's understanding that communication is the problem and communicating complex emotions is difficult for all of us and most especially those with autism.

The truth is that many of our children and adults with autism can and do make eye contact but it can be difficult and may even be painful. Remember that it's not about the quantity of eye contact but the quality. Remember that eye contact may be perceived as painful by the person with ASD. Remember that if you ask a person with ASD to look at you, they may not be able to HEAR you at the same time. Remember this about eye contact: the saying is that the eyes are the windows to the soul. Think about how much we convey with eye contact every single day: love, lust, hate, sorrow, and more. The eyes are very powerful. If you don't understand what you are seeing or are overwhelmed by it, eye contact might be something you'd avoid.

Remember this about autism: it is complex, it is difficult to understand at times, it can be frustrating at times, but it can also be great, exciting, powerful, and these individuals have MANY strengths. Remember that we can all learn something from someone with autism--we just need to take the time to understand and LISTEN to them--even when they are not using words to talk to us. Those with autism are our greatest teachers. Learn from them.

A Special Needs House

2009-02-03T23:03:00.005-06:00

Today my husband took our new kitty, Moses, to the vet. While Moses was there, the vet asked Anthony if we thought he had a hard time hearing. Anthony said that, yes, it seems that he doesn't respond to his name, doesn't respond to the food bag being shaken, and thinks the vacuum cleaner and hair dryer are more fun than anything. After a quick exam, the vet said to wait till Moses was sleeping and make some noise off to the side of his ears to see if he responded. Tonight, Anthony did just that and whistled the loudest whistle you've ever heard and Moses didn't flinch, didn't move, didn't cock an ear, nothing. We did it time and time again just to make sure.

Moses is deaf.

It's odd to have this feeling again. The feeling that something seemed odd, something I couldn't quite put my finger on. Something we thought was nothing that turned out to be a change in lifestyle.

Now that we think about it, Moses is a very visual cat. He watches, watches, watches. Follows us into the room where we feed him every time we walk in there. Why? Because he doesn't know when we're going to feed him, he can't hear the food bag shuffling around. He doesn't respond when we walk in the house, doesn't come to kitty kitty kitty. The other day we thought we'd lost him because we couldn't find him anywhere. He didn't come to any calls, any sounds of food, anything at all for hours and hours. We finally found him blissfully asleep, not once having heard us calling out to him.

He is a fantastic cat. Very funny, very loving, very patient. Now it's our turn to be patient with him. Now instead of calling him, we'll knock on the floor or use a flashlight. Now instead of calling out to him and picking him up, we stomp to let him know we're there before picking him up. We'll strictly maintain his feeding schedule so he has a sense of security and routine about his life.

Life is about adjustment and this is a great experience for our children and our family. Maybe Ewan can teach Moses some sign language!

This situation reminds me of so many families that come in with concerns about their child. At first, something seemed odd but maybe it was the first child and mom and dad just couldn't put a finger on what was different. Often, I hear parents say they think their child is deaf, when in reality the child may have a form of autism. Parents will say they call out the child's name over and over with no response, but the Spongebob theme song comes on and the child comes running from 3 blocks over. The autistic child is also very visual, often relying more on what they see than on what they hear. Children with ASD often have difficulty communicating either expressively, receptively, or both and they end up learning alternative forms of communication--like sign language. Families and children often do a lot of adjusting after diagnosis--slowly learning each other over again from a new perspective.

Today, I've questioned whether or not Moses is deaf several times. I've tested his hearing time and time again, just to make sure--as if I don't quite believe it. Like the phases of grieving we all experience when things go differently than planned, I am in denial. But I'm reading, I'm learning, I'm finding out what I can do to make our cat's life happy, full, and healthy. Just like so many of our parents do, just as our parents want to see their children have a happy, full, and healthy life. Now we have to really tune in to our skills of observation to understand what Moses needs, what Moses wants, and what Moses is thinking. It's like getting to know him all over again, the joy of learning each other now in the light of this day.

Red Flags for Autism:
*Child not orienting to name when called
*Child not pointing by 12 months
*Child not babbling by 9 months
*Child not using single words by 16 months
*Child not using 2 word sentence by 24 months
*Child loses skills at any age

Some myths about Autism:
*Children with autism do not make eye contact--it's not about making eye contact, it's about the quality of the eye contact and how the child uses it!
*Children with autism are all nonverbal--most of our children with ASD DO have language although it may sound odd or may be delayed.
*Children with autism do not show affection--most of our children show a lot of affection toward a parent or other special caregiver--usually it's on THEIR terms though!
*Children with autism resemble that guy Rainman--Rainman was a savant, there are only about 100 recognized savants in the world. Not all savants are autistic and not all autistics are savants!

WHEN IN DOUBT, REFER!!! For more information go to The Autism Program of Illinois

Literally Literal--Ewanisms

2009-01-26T11:32:00.007-06:00

Words are funny sometimes. Think about words like 'such' or 'with' or 'thing'. Sometimes they make sense, and othertimes these words sound made up. If you are someone with an autism spectrum disorder, these words may have little meaning. How do you know what 'such' is? What would that picture look like in your mind? I often think how hard life must be for those poor souls over at Boardmaker who try to come up with symbols for words that everyone can recognize!

Many of our children with ASD are pretty literal and concrete thinkers. Ewan is no different. Autistics will also use that literal and concrete language quite freely and honestly. The little white lie has little meaning for them! They say openly what the rest of us are thinking. Ewan has what we like to call 'Ewanisms'. Some of my favorite 'Ewanisms' include:

"Mom, why is the bill light?" (In reference to our light bill being due!)

When a new doctor met him the other day, the doc pretended his name was Dr. Sock Stealer. The doc then asked Ewan, "Do you want to know my real name?" Ewan's answer, "No, not really."

One time, Ewan had to see a different doctor who had to press on Ewan's stomach and listen to it with his stethoscope. When we were done, Ewan was out in the hall and yelled out to the doc, "Thanks for touching me Doctor!" Oh my, we all got a few looks for that one.

Ewan's teacher asked if his homework was done, his response was, "I don't do homework anymore. I'm all done with that."

Ewan was out with his dad and his dad came across an old friend--a girl with a very short haircut. Well Ewan had been taught in speech that girls usually have longer hair than boys and Ewan asked his dad, "Dad, I can't tell if that's a girl or a boy?" Problem was, he said it loud enough for EVERYONE to hear! ;)

Ewan came up to me yesterday morning as soon as I got out of bed and jumped up for a hug, he pulled back and said, "Grooooossss, you have terrible breath Alicia!" Nothing like honesty at 8am on a Sunday morning!

Ewan was asked on a language test the other day, "What would you say to someone if they just lost a race?" His reply, "It's ok, next time I'll go slower."

One time in the car, the boys were being incredibly crazy, trying to wrestle each other while strapped in their respective car seats. Anthony having just about had enough turned around and said, "If you boys dont' knock it off, I'm gonna lay the smack down!" Ewan said, "Dad, you can't do that--there's laws against it." He may well have a career in law.

Another time, my husband had been driving too fast and was pulled over by a policeman. When the officer came to the door, Ewan said quite loudly, "My dad was driving really fast!" No getting out of that one. Then Ewan asked the officer, "Where's your mustache?" In Ewan's head, all police officers should sport a mustache.

Ewan has to check in with one of his doctors every few months because of migraines, when we showed up to the office I think he was still a little confused about which doctor he was going to see that day. When she walked in he said, "I don't want you today, I want to see that other doctor!"

Remember for those of you living and working with someone 'on the spectrum'--it's never meant in anger or to ridicule, it's just how their brain is working. Sometimes it's nice to have such honesty and othertimes, well, it can be an exercise in humility for mom and dad! ;)

Autistic Humor

2009-01-18T14:45:00.004-06:00

Lately, my spectrummy son has been quite the comedian. Sometimes on purpose, othertimes not. I've heard many professionals says autistics can't understand humor and couldn't tell a joke if it came wrapped up in Thomas the Train wrapping paper. I beg to differ.

The kids and adults I've met throughout the years that are 'livin on the spectrum' are some of the most humorous individuals I've ever had the pleasure to meet. It could be that my own autie traits have clued me in to this humor that other neurotypicals might not get. It could be that my own sense of humor is a bit odd too. Either way, most of the kids and adults I know with ASD, have a tendency to make me smile.

Part of what makes my son so funny is that he is talking as if he were an adult trapped in a child's body. Sometimes he calls me by my first name, which always makes me giggle. I asked my husband to give me the funniest thing he's ever said and his reply was, "Oh I can't, there's just too many!" Ewan also likes to tease us or his brother, he regularly de-pants his brother.

One of the greatest sounds I've heard is my son's laugh, that true from the belly kind of laugh--it's like music to my ears. Here's some snippets from our early Morning forays into getting ready for school:

"Alicia, I can't sleep with that light on."

Ewan, I am tired of standing here, GET up!"

"Allliiiicccciiiiaaa, so don't stand, you go sit on the couch and I'll stay here."

"Ewan get up NOW!"

"No. I like it here. I'll stay in bed and you go to school."

Some of our favorite hair cut quotes:

"Don't touch my beautiful Ewan hair."

"Mom, I need a rockin' hair cut."

One time he told his bus driver that he might be too old to drive a bus. One time, we were pulling out of the drive (whole family in car) and he says, "Mom, when can I say shit?" I replied, "When you are 18." He said, "Mom, how old am I now?"

One time we were driving down the highway and as we slowed down to turn there was a dead raccoon on the road, Ewan said, "Well that's dead. I think it ate something and it killeded him." (if you only knew Ewan's thoughts on foods it would be funnier).

One time we were trying to sync the wii remotes and having some problems and nothing was working for a few minutes. So Anthony said, "Honey can you look this up on the internet this is really pissing me off." Ewan says very calmly and matter of fact like, "Yeah dad, I'm getting pissed off too."

Another time, Ewan yells out to his dad to come look at all the cool stuff on Wii shopping. Anthony goes in and Ewan starts showing him these games and Anthony starts getting into and is like, Wow that's cool! How about we look at this game, and that game, etc... Finally, Ewan turns to Anthony and declares with authority, "Ok that's enough daddy. Go make me something to eat." (and he points to the kitchen). Anthony said the stinker wasn't even hungry he just wanted Anthony out of his Wii space...

Never a dull moment. Never.

An Asperger Christmas

2008-12-30T19:22:00.004-06:00

Christmas this year was fun and as always, very interesting! We decided that the kids needed a big surprise so we made sure Santa knew that they really, really, really wanted a kitty cat. So Santa made some arrangements and delivered a very pretty little boy that we named Moses. Ewan had many, many questions this year. Did Santa bring Moses to us? Where did Santa find Moses? How do you talk to Santa? I want to see his sleigh, and then ride in it."

When the children saw the kitten, Skye cried she was so happy. Little Vaughn jumped up and down with obvious joy. Ewan said, "Where's it going to live? Where's it going to sleep? What's it going to eat? What if we move, does the cat move too? Where do kittens come from?" And so on and so forth. Ewan is officially known in our house as "The Question Master". If the kitten goes to the bathroom, Ewan must inform everyone and then promptly ask "Where does poop come from? What is cat litter? Why does the cat eat so much?" Oh my. Cheri said this was going to be a teaching moment every day, and boy was she ever right!

On Christmas Eve though, I always let the children open ONE gift--one that I pick out that always happens to be pajamas. This year, I got quite the honest response to what Ewan thought of getting pajamas. As the kids unwrapped this one Christmas Eve gift, Skye's face lit up with comfy new pajamas and Vaughn exclaimed, 'Oooohhhh I LOVE Transformer pajamas' and Ewan said, "UH! Pajamas! I didn't put pajamas on my Christmas list! I don't want pajamas. NO Pajamas ever for Christmas mommy. NO! NO! NO! NO pajamas! Never again mommy!" Needless to say, it was not difficult to discern whether or not Ewan liked his present!

It took quite some time to peel him off the ceiling so to speak. He was pretty riled up over the whole pajama incident. We were able to calm him down by telling him tomorrow Christmas would come and who knew what Santa would bring. Many, many, many, many minutes later Ewan and Vaughn fell asleep. The next morning at 5:42 am, they come running through the house and Ewan was pumped up to open some presents that he said better come from his list. When he opened one gift of a racing game for his Nintendo DS, he very loudly exclaimed, "NO! I do NOT like these games. This was NOT on my list!" So we took some time to explain that it's ok not to like your gift but it's not necessary to let everyone in the entire subdivision know that you didn't like it!

Honest to a fault he is. I wouldn't have it any other way. (We'll work on tact this year AND we'll stick to the list!)

Hope everyone has a safe and happy New Year!

By the way, we had to peel the pajamas off Ewan after 3 days...he decided they weren't so bad after all. Just not on the list.

The Night Watch

2008-12-25T14:25:00.005-06:00

I was thinking of posting this last night as I got the children ready for bed. Last night, of course being Christmas Eve, it was hard for the children to go to sleep. Too many thoughts running through their heads! Every little creak meant Santa must surely be here. Finally, finally those little eyelids lost the battle to gravity and exhaustion and off they went to sleep. Hours later, I too went to sleep but not the deep sleep I normally find. No, last night was much like the nights when one of the children gets sick. One eye closed and one eye open. Mommy always keeping an ear out for little feet out of bed.

It's not real sleep then, it's a half sleep, something in between. No dreams, not really, just half imagined thoughts. When Ewan was younger if he was sick he would go straight to the living room and he would never come to my room and wake me. So I'd always have to be on the alert to hear him. I know many families feel this way about a child who is sick, dealing with tubes, dealing with runners, you name it. Never truly sleeping, never truly giving yourself over to deep sleep. It's exhausting but often necessary.

So last night as I crawled under the heavy winter blankets, I settled in for the night watch but this time not for illness. This time it was waiting and listening for children to realize it was Christmas. The moment came at 5:42 when Ewan came running feel speed and yelling at the top of his lungs, 'Wake up everyone! Wake up!' while he flipped every single light on in the house. No mistaking he was awake this time!

Which word? Which world?

2008-12-16T15:46:00.004-06:00

Ok, so I have a few more thoughts on this whole people first language versus the flip side, at least in terms of autism. I am at a conference at the moment and I listened to a session this morning on Deaf culture with a capital D. Couple of things that the presenter discussed was a quote by Lou Fant. Roughly the quote went along the lines that without a legitimage recognized language, there is no culture. Without culture you have no self-identity. Without self identity you just go on trying to be what others demand you to be.

Hmmmm....

Well, according to this little definition, we can't really have an Autistic culture with a capital A because there is no legitimate, recognized language that is shared by autistics worldwide. But is that how culture should be defined? What about a culture without language--can there be such a thing? I don't know if you've ever just sat with an autistic person, just to BE. It can be an incredibly powerful thing to just BE, with another individual. To sit together and NOT speak. I seem to remember that most of what we communicate is through means other than words...so why do words imply culture or that in a void of language culture ceases to exist?

The speaker also discussed different norms and behaviors that are found in the Deaf that can be misconstrued by the police, by medical staff, and by others. Sound familiar?

Artwork by a Deaf artist was displayed as well. A picture of a child with an adult hand grabbing the chin and forcing the child to look at the adult was shown. It was discussed by the presenter as being an incredibly rude thing to do, what if the child was playing and did not want to be interrupted? Yanking chins and forcing eye contact...sound familiar?

Deaf space was also discussed with appropriate lighting and open space. How many of you out there definitely have an Autistic space in your house or your whole house is considered Autistic space? Definitely sounds familiar.

I then went to an afternoon session that was focused on self-advocacy for groups with disabilities and the people first language was heavily emphasized. Person with autism rather than autistic person. The term autistic person was considered disrespectful. This group also mentioned person with deafness so I was a bit confused since the first presenter emphasized Deaf with a giant, capital D. It was mentioned that self-advocacy was only possible with people first language. In this case, a person first and disability second. Yet this person clearly distinguished between the person and the disability. Many autistics don't separate this out in the same way that the Deaf do not--read the quote a few posts ago to get my meaning. Quite the conundrum here...

I'll leave you with one last thought, the first speaker mentioned collectivism and that the Deaf community grows AS a community, moves FORWARD as a community. It's time that we see that attitude in the Autistic community as well.

The eyes are the key

2008-12-14T11:19:00.004-06:00

You will notice a post over on the Food Chaining blog where Cheri discusses how important it is to observe a child's eyes during therapy sessions. Cheri is 100% right--the eyes are the key. It was once said that the eyes are the windows to the soul and that is something we can all learn from.

One, if we are dealing with an autistic individual then eye contact is a pretty big thing. Big because we as parents, teacher, or therapists want, if not demand, eye contact. Big because the autistic person may or may not be able to give it. Think about it this way: we can convey so much through eye contact alone. I don't need to say a word to my husband and he understands the meaning of what my eyes are saying: love, impatience, irritation, lust, confusion, anger, and more. Our eyes speak volumes more than our words ever can. The sheer depth of meaning from our eyes can be unbearable for someone who cannot handle the gaze.

Two, think about how often parents, teachers, and therapists misconstrue what we are seeing because we often focus on the behavior, the body language, the words without actually looking at the eyes. Too often, we think we see anger when really what we are seeing is anxiety. Meltdowns for the autistic individual are more about anxiety than anger but what we actually see is anger. We see angry outbursts, we hear angry words, we see angry movements but what we miss is that the core of the problem is anxiety not anger. The difference is the ability to express gradations of emotions. This person may be dealing with a much more limited emotional vocabulary and have difficulty expressing sadness, despair, depression. It all comes out as anger.

Look to the eyes to gauge the situation. Look beyond what everyone else sees to find the truth of the matter. Listen beyond the angry words that may come forth to hear what is really being said.

A word. An identity.

2008-12-12T19:24:00.006-06:00

In the autism community, and the disability community as a whole, there is much disagreement over the order of just a few small words: person with autism or autistic person. So which is it? People first language implies that it is the person with autism but many adults with a form of autism say that it is far more appropriate to say autistic person.

So why say autistic person? What's the difference? People first language, the person WITH autism language, implies that people with disabilities are people first--not their label. However, there is always the flip side to this and it may be difficult for some people to understand, most especially parents. Adults often find that everything about themselves is tied in to being autistic, and they find this to be a very good thing. They look at being autistic as no different than gender. You ARE either a woman or a man, boy or a girl. In their view, you either ARE autistic or you are not. To them, it as much a part of their identity as the color of their hair and the color of their eyes.

I generally defer to the wishes of the individual or group I am talking to. If one group tends to find more identity with people first language, great. If they find more pride in using the term autistic, great. The only thing I hope for in both groups is that they have a healthy sense of self-esteem in who they are, what they can do, how they think, and can see themselves as valued part of community and society. The Deaf culture has seen its own ups and downs throughout history while Autistic culture is still in it's infancy. My only hope is that one day we see as much value in an Autistic culture as we do in being neurotypical.

I'll leave you with a perspective you may not have heard yet from Jim Sinclair:
"Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter; every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with. This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism" (Don't Mourn for Us, 1993).

Medical Care for the Child or Adult with ASD

2008-12-03T23:05:00.006-06:00

Throughout history, the field of medicine has made great, if not enormous strides to provide quality care to so many different people. Yet, with all the advances in technology, pathology, and understanding of the human body and disease or disorders, many individuals remain under-treated and misunderstood. Just read the article, "Why Do the Mentally Ill Die Younger" from Time to see there are many individuals and groups in this situation.

Among those, I would include the person with autism spectrum disorder. Many autistics are either non-verbal or can have amazing verbal skills but not be able to locate or talk about the quality of their pain or distress. Too often, the young child with Asperger's Syndrome has been taught a very social appropriate social scripting but has never been able to communicate how he or she feels on the inside. He or she may not be able to regulate their internal environment nor understand the signals the body sends out. Teaching a child or adult how to listen to their body, to decode and sort out the messages of pain, hunger, anxious, excited, scared, ashamed, embarrassed, of love and hate all takes time and patience.

If these feelings are not broken down and taught in a way that the individual truly understands (i.e. not just a social script!) then how on earth can we possibly expect the individual with autism to get medical care? How can he or she talk about the quality of their pain? A dull pain versus a stabbing pain versus a pins and needles pain all might lead a physician to very different diagnostic places. But if the child or adult can only describe it as 'hurts' or can only use behavior as a means to communicate, can we expect the same type of care as the next person?

I work at an autism program where one of the things we hand out is a Where does it hurt? page and a pain rating scale. Of all the things I can provide for families or professionals working with an individual with autism, I feel those two are the most important. Pain and feelings are the ultimate teachable moments and they come up on a near daily basis. Hunger can be painful unless we understand and can put that feeling into perspective and to know how to relieve the pain by eating. Fullness can be painful unless we understand the meaning of what's happening and know to stop eating. Pain is very useful to the body as it alerts us that something is wrong. Something needs help or needs to be fixed.

Again, I defer to one of my favorite books "A Child in Pain" by Dr. Kuttner as she discusses the protective value of pain: "In its healthiest form, short-term pain is protective, preventing damage and distress. As David, aged four and a half, discovered: 'You've got to listen to your stomach when it's hurting, cause if you don't, your stomach will get upset!' David knew this firsthand; for five days he had had stomach pains and gastric spasms and had been throwing up. The pain signals had taught him that if he continued eating the tuna sandwich that his well-intentioned mother had given him, his stomach might send it back again. David, who was recovering from a gastrointestinal virus, had come to respect the signals and sensations he was receiving from his stomach, which were helping him to eat only what his stomach could handle and telling him when to stop. Because his actions helped settle his pain, and nausea, and because he was being listened to--although he was only four and a half--he was learning how to manage his own distressing body experiences" (pg. 2).

Pain serves a purpose and we need to be teaching that purpose to our loved ones with ASD. Pain is a survival mechanism and keeps us from damaging our bodies. When a person can by hyposensitive and not feel pain the same way that others do, it makes these teachable moments all that more imperative. How many of us know a person with ASD who walked around with broken bones or serious illness because the pain was not felt or recognized? We may not always be able to teach how to feel pain if there are serious sensory issues, but often, we can teach clues to a painful experience or illness. Teach children that when they fall, they need to check themselves over. Does anything feel different? Should I tell my mom or friend that I just fell down and could be hurt? Teach adults to recognize signs of fever, such as sweating. Teach children and adults to understand that red and swollen eyes and a very dry mouth might mean illness. Teach them to recognize the signs that mean the body is protecting itself from illness or is in pain.

But here's where it gets tricky. Shame and embarrassment can be felt with the same intensity as a broken toe or stomach ache but these feelings mean something else. The body is not in danger, but the mind and sense of being are. Those are internal emotions that the child or adult needs to know how to deal with and needs to know who to talk to about it all. How we treat emotional feelings is very different than how we treat physical pain. And it's not always easy to tell the difference between them and be able to sort them all out. But if we don't talk about the difference, they may never know. It's just as important for the doctor to hear that the patient is in emotional pain as it is to hear about physical pain. Physicians need this information to treat the patient in the right way.

Ask yourself if the autistic person you know and love can adequately describe their internal environment? Can they recognize and communicate pain to you or their medical doctor? Is he or she telling you they are in pain right now but you aren't listening or interpreting their messages correctly? Are you interpreting behaviors as only behaviors or do those behaviors have meaning such as pain or emotion?

The above picture has a lot of meaning to those who know the story. The picture was pulled from a video I took of Ewan in a therapy session because he wasn't swallowing liquids well. It was only after a very talented and experienced professional watched this and knew what the body language implied: a very painful disorder known as Eosinophilic Esophagitis. Only Ewan didn't have the language at the time nor the ability to talk about pain in a way that would let us know just how much help he really needed.

Holidays--not what they used to be

2008-11-28T20:38:00.007-06:00

Holidays don't hold the same appeal for our family as they used to. For me, growing up and going to holiday dinners was so much fun and so full of good 'soul' food. I've never been one to turn down good food so I relish in all the smells, spices, and tasty dishes. I've always loved mashed potatoes, turkey, and pecan or pumpkin pie. So it's unusual now to look at Thanksgiving or other holidays that revolve around a big meal as more of a chore than a delight. Chore a bit because of the traveling. Chore a bit because of the transition for Ewan. Chore a bit because of the social aspect that Ewan finds absolutely painful. Chore more than a bit because of the food issues.

My life before eosinophilic esophagitis was a life full of milk, cookies, cakes, cooking desserts, and looking forward to every holiday dinner. My life post eosinophilic esophagitis is a life contemplating ingredient lists and allergy complications. As I said to someone else with severe food allergies, big family get togethers that revolve around food just don't hold the same appeal that they used to.

For Ewan, holiday get togethers just aren't his cup of tea. I've tried the past few years to bring these two worlds together with as much playing, reading, practicing, and modifying as possible. But unfortunately, these two worlds just don't seem to match up. The ASD aspect rejects the social nature of the holiday, small talk with family, fluttering from grandma to grandma to aunt to cousin. The Eosinophilic aspect rejects the table and the dinner full of milk and eggs. The textures and smells are so far out of Ewan's league that he may never fully appreciate broccoli casserole even if it's made with fake cheese, soy milk, and egg replacer!

Another problem with Thanksgiving is that it falls directly into the middle of Ewan's worst allergy seasons. I can only assume it is dust related and if you all think I can get of dust, you must believe I really do own a magic wand. Ewan's Thanksgiving outfit generally involves a nebulizer. I pack our bags for an overnight trip to my sister's house and Ewan's medications and breathing treatments get their own suitcase. It's hard to enjoy the holiday when your eyes are red and swollen, the constant cough gives you muscle cramps, and the voice is so hoarse you can barely talk.

Thanksgiving used to be my favorite holiday of all. Mostly because everything about the holiday is food related. Turkey. Good. Sweet Potatoes. Good. Pie. All good. Now, I still look forward to Thanksgiving but I generally don't cook anymore because the smells are too strong in the house for Ewan to handle. We generally show up after the food has been cooked and the smell isn't as knock you down strong. I eat with relish and excitement, but I still feel the stares of everybody as Ewan does his own thing. I still hear the, "What's he eating, why isn't he eating with everyone else, doesn't he need more than fruits and the veggie tray?" Ewan is generally on such overdrive that hunger doesn't kick back in until the following day. It's hard to accept that a child doesn't eat the same way as the rest of the family. It's hard to accept that the child doesn't eat with the family. So much culture and tradition is passed down through food and holidays that we feel a child is missing an integral part of their heritage if he or she hasn't taken their respective seat at the table.

It's a difficult transition for our family. I don't want to take food out of the picture, not at all, but finding another focus besides the table has been an exercise in futility thus far. As Ewan gets older, I'd love to create a new tradition for us. Sure there is a table full of turkey, potatoes, and pies for the rest of us, but then we're off to a movie or a game or we have a Wii tennis tournament! Someday, someday, I will balance all of these needs and traditions and create something that works for our family. All of us. I want Ewan to find meaning in holidays like Thanksgiving that goes beyond the turkey and the table.

Just a few guiding principles

2008-11-24T22:50:00.003-06:00

I have been reading A Child in Pain: How to Help and What to Do by Leora Kuttner, Ph.D. So many insightful thoughts from this book that can be applied to so many different situations. I tend to put everything into the perspective of the child that thinks differently, whether through experience or neurology, and while reading I am constantly reminded of Ewan. When Ewan was born, there were things that were immediately different about him. His alertness, his need for the novel, his sensitivity to the environment and to input, his feeding routines and rituals, all led us to know that we were dealing with a very unique child. He went through many years of having difficulties eating, whether through texture or taste or difficulty swallowing, before it was discovered that Ewan had been dealing with a painful disorder for quite some time. When Ewan was diagnosed with Eosinophilic Esophagitis, I felt so much guilt over every spoonful and bite I had urged, cajooled, begged, and yes, even forced into that little mouth. And I felt the weight of every single one of those bites when he was diagnosed. How could I as his mother, not have recognized this child was in pain with every swallow?

As you can imagine, I am a fierce advocate for children with autism receiving the medical care they deserve. As you can imagine, I find it difficult, if not nonsensical, to lay the blame of all behaviors on the doorstep of autism. So in reading Dr. Kuttner's book, I find myself thinking about what she's written and applying it to our experiences. Some important messages come from what she describes as the language of pain and the language that helps pain go away, something Dr. Kuttner describes as Therapeutic Language. As I remember all the times that I put a spoon to Ewan's mouth and said, "Just take a bite, I love apples! Apples taste so good!" Had I known what was really happening, I might have phrased that differently. What I didn't realize was that with every exchange, I failed to see how my language demonstrated my own perspective and not Ewan's. As Kuttner's says, "What you say and how you say it reflects what you think, as well as what you believe, what you teach, what you expect, and at times what is likely to happen" (p. 93). (my emphasis)

What I failed to understand is that those loaded phrases like "Apples taste so good!" only reflected my own experience with apples, not Ewan's. It didn't acknowledge that Ewan indeed, had a different perspective than my own, maybe he thought apples tasted bitter or sour and not good at all. Maybe as he ate the apple and swallowed it, the first few bites of pleasure were followed too quickly by pain, thereby replacing a favorable experience with a painful and traumatic one. No wonder the child would cry when it was time for meals.

I watched "City of Angels" the other day and some quotes stuck out instantly for me. As Nicholas Cage and Meg Ryan are talking about her eating a pear:

"What's that taste like?"
"You don't know what a pear tastes like?"

"I don't know what a pear tastes like to YOU."

Taste is subjective. We can learn something very valuable from Hollywood here--I DON'T know what a food tastes like to someone else. I can ONLY know what it tastes like to ME. We need to learn to describe food beyond good, tasty, delicious, bad, or gross. How about how Meg Ryan goes on to describe that pear? "Sweet, juicy, soft on your tongue, grainy, like sugary sand that dissolves on your tongue." Now that's a bit more descriptive and without judgment--no positive and negative connotation with it, not saying it tastes good or bad or yummy or yucky. Pain is also subjective. I don't know what someone else is feeling. I cannot gauge how great or awful the pain is for another human being. I cannot downplay or disregard the pain that someone else is experiencing. However, as Kuttner describes language can be very powerful, "Language that conveys any degree of support, hope, love, courage, energy, or affection, and that promises at least some release from suffering helps children to let go of their fear and pain" (p. 93).

More thoughts from A Child in Pain (Chapter 6):
"Remember what you say is as important as how you say it."

"Do not underestimate the power of listening."

"Define the child's pain by framing it with hope, not doom."

"Use language and ideas that invite hope and courage."

"Pay close attention to the child's facial expressions, positions, and movements throughout the experience."

"Use language that implies positive change." (Another powerful lesson from the Child Development Laboratory at EIU--positive language and rewording negative statements into something positive. More on this later!)

"Pace this process respectfully. Even when we are eager to help and to 'fix it', remember that obtaining this information should be at a pace and rhythm that works for the child. As you show the child that you can wait, you teach not only sensitivity but also patience by your own example"

Think about these points as you work with or raise a child, typical or atypical. Remember these points as you work with or raise a child who is having a problem with some aspect of life, including eating. Remember that your experience is simply that, your own. Remember that pain is experienced in a myriad of different ways by us all. Remember to be respectful of children. I find that adults will attempt to do things or talk to children in ways they would NEVER do to other adults. If you find you can't get away with X with another adult, it's probably not a great idea with children either! (Just try patting another adult on the head and saying, oh aren't you just the most precious thing ever--look at your pretty dress!)

Be on a child's level

2008-11-22T17:29:00.008-06:00

Last year, I was a graduate assistant in the Child Development Laboratory at EIU and was lucky enough to work with incredible children, talented students, and passionate instructors and professors there. One of the greatest lessons I learned from my time at the Lab was to get down on the child's level. It's not something that comes instinctively to adults. It's something we have to work hard at doing, to remember, to get down on their level and to communicate. So often, we find ourselves looking down at children and interacting from a five foot height difference. Mostly, adults are looking at the tops of heads as they survey the scene in front of them. There are many disadvantages to this type of interaction, one being the missed the chance to see what the child sees from his or her perspective. Getting down to the child's level involves gaining respect, an equality, a meeting of the minds if you will. How can we begin to think that looking down at children facilitates an interaction? How can we expect to learn from our children or to exchange ideas with such differences in viewpoint?

One of the first things you will notice about me now is that as soon as a child enters the room, I am down to their level. I see what they see. Understanding each other is fostered simply by moving down or up to their level. There are those who might say that the height advantage conveys a feeling of authority to the children. I say authority comes from within not at a particular magical height. My goal lies more in developing bonds and establishing trust.

Today's tip: Get down--no I'm not referring to any dance moves here--literally get down to the child's level. Make a connection that you might have missed before with this child. Practice this--it may seem counter intuitive and awkward at first. In order to feel this inequality, why not try sitting on the floor as another adult talks down to you in a conversation--see how connected you feel, how included you feel in the conversation while looking up at the other person. Trust me, it works.

Frogs & Snails & Puppy Dog Tails

2008-11-21T21:14:00.005-06:00

Boys and girls and girls and boys. Two totally different ends of the rainbow, in this house anyway. My oldest, Skye, the infamous TEENAGER, is a girl. My other two munchkins are boys and nowhere near the teenager years--although when it hits these two it will be teens at the same awful time and my gray hairs will multiply by the thousands. Tonight, my boys have completely ransacked my house. I left a house a somewhat in order this morning and as it stands apparently a weather anomaly in the form of tornadic activity swept through several rooms of my home while I was at work. As I stand amid the rubble, I have to remind myself between what is normal and what is not. When you have an atypical child, you tend to forget what is typical. When you work with atypical children you forget what is typical. As I survey the damage and make a list for my insurance agent (aka, the husband), I remind my self that this part at least IS normal.

Not to say that my daughter has never made a mess...ack, sorry I just about choked on my candy cane there from the irony of the words I just typed. Her room is an official disaster zone, I am awaiting my check from FEMA to recover the 12X12 space that used to be a bedroom. As I learned more about Ewan, autism, and listened to discussions about executive functioning I began to think Miss Skye had a frontal lobe that could not understand how to organize, plan, and implement the cleaning of her room. Now I understand this problem to be inherent to all chronologically challenged teenaged children. Room cleaning is more than those little brains can tackle but somehow her brain manages to play volleyball while texting all simultaneously.

No, when Skye was a young child there were other toys scattered to and fro and she was more interested in animals than toys. Luckily for her, her first few years were on a semi-farm replete with horses, cats, dogs, ducks, geese, and more. Now as stumble from my bed to the coffee maker in the morning it is a small plastic dinosaur that wedges itself between my toes and if not a dinosaur it's a Percy engine and I'm literally taking a trip on a train.

As I type I am listening to the boys chatter in their beds in the dark. Now Ewan wants to be a teacher (last month it was a doctor). I think he is entertaining the idea only because he can boss people around. Right now, he is chastising his younger brother for not getting his homework done. If you know Ewan, you know that his true calling is a drill sargent--everyone is humbled before his mighty Asperger is always right attitude and all are equal under his gaze--from principal to parent to check out guy at Walmart--we all hear about what we are doing wrong and how he knows what we should be doing and how to do it! Vaughn says that he wants to be a singing man / angry teacher / police officer who arrests teachers named Ewan. I'm not sure how many positions are there for this particular career choice, but if I know Vaughn, he'll find one.

Darkness Falling

2008-11-21T20:20:00.004-06:00

Is anyone else being slowly driven insane by the fact that it is dark as midnight at 5pm? I loathe the early nights. I keep thinking surely it is time for these boys to go to bed and alas it is usually only 6:20! I think if the law says Daylight Saving Time AND I'm driving home at the end of the day with my high beams on then the least we should get is a kickin' fireworks display every night.

I'm beginning to think I'll need coffee in the morning, diet coke after, followed by coffee in the afternoon! There may not be enough caffeine left in the world to keep me from snoozing in my spaghetti.

Combine the dark with this bitter cold before Thanksgiving has even come and gone and you have one grumpy Ms. Lisha...It really is a shame more species don't hibernate, and that includes HUMANS! Who wouldn't enjoy eating all summer and fall and then sleeping under layers of blankets for 3 months? I'm game.

So this is growing up

2008-11-20T21:43:00.004-06:00

Tonight I had an 'aha' moment. The lightbulb went off and I was able to take a step outside myself and see life in a new way. Tonight was our support group meeting for parents and we were talking about families and keeping ourselves, our marriages, and our families whole. It's not easy to do and it's not easy to talk about. I'm generally fairly quiet about my personal life. I'm guarded even with people I'm close to. I don't know why, but it's as if I've needed to keep some things inside, some things from being said outloud. It reminds me of those in the Harry Potter series that would not speak the name Voldermort--for in saying the name you give it power. Actually, it just so turns out that saying the name, saying the thoughts, take away their power and free us.

Tonight a fellow mother made a statement that literally changed my life in an instant. She said, "You know I didn't used to come to these but since you've opened up the past two months, I feel connected now. It's not that I didn't like you before, but now I feel just, more." What a powerful statement for me. I've felt in the past that to help others be strong, I've had to be iron clad and teflon proof but I've connected more with mothers and fathers the past two months by showing the warts, by talking about some of my darkest times. It's not easy to let that go but I'm willing to try to grow more if my families are willing to work this hard at what they do.

I mentioned in an earlier post that I feel a calling to what I do now. It's not often in life that we get those moments so I pay attention when I do. Those two sentences from a mom I really was not that close too before tonight, matured me in ways I can't really describe. We feel as if we've made so much progress at times, only to realize how much farther there is to go in knowing all there is to know about life.

Tonight I heard from mothers, a father, families about those darkest hours. It's not easy to talk about a son having seizure after seizure and having to 'leave it all to God'. It's not easy to talk about being afraid of your own child because he or she is bigger than you are now. It's not easy to talk about what will happen if I die? Parents need help as much as the children and we need to support the entire family. Siblings need support, grandparents need support, aunts and uncles and friends all need support as well. I learned tonight that I don't need to be an island, I don't need to be a pillar of concrete strength. And to be honest, knowing that, is a relief. We all must put down our troubles and worries at times and carry them together.

It takes a village to guide a child

2008-11-20T08:08:00.007-06:00

As a mother of three children there are a couple of couple of proverbs I believe in. Those include: "It takes a village to raise a child" and "One knee does not bring up the child" and "One hand does not nurse a child." As a mother of a child with autism, I apply this same philosophy to his treatment: "One therapist does not treat the child!" One of the best lessons I have learned from Cheri Fraker, Laura Walbert, Cheryl Swenny, Sibyl Cox, Dr. Fishbein, and of course, Stacey Vitale is that it takes a multidisciplinary team to treat a child. Too often I see a family find a methodology they like and stick like glue to it. They'll defend ABA till their last breath, or Structured Teaching or RDI or Floortime or dietary restrictions or something else.

One thing that strikes me as odd about some of the ways to treat a child with autism is that often it is dominated by one field, one school of thought. If we know anything about the child with autism, we know that they are all different. Each child has his own mind, his own personality, his own will, her own strengths, her own needs, her own environment. As Joseph LeDoux says in Synaptic Self, "Our hopes, fears, and desires influence how we think, perceive, and remember," and "Learning involves the nurturing of nature."

It is never so simple as the age old argument of nature versus nurture and it is never so simple as to think that one treatment methodology is going to be applicable to every child with autism. The language of nature and nurture is the same, it is synaptic connection that is achieved. The language of autism is unknown to us at this time but it unlikely to be as simple as antecedent, behavior, consequence.

This leads me to another thought. Are we really treating the child with autism or are we guiding him or her toward living in a neurotypical world with an autistic brain? I prefer to think of it as guiding the child. Sometimes I am guiding Ewan and sometimes he takes the lead and is guiding me along the path. If we think of it as treating, the child never gets to lead because he or she is not qualified to lead the therapy, he or she is not an expert. I come across too many experts in autism. I firmly believe that no one individual knows everything about autism.

Not to say that all the current methods of working with an autistic individual don't have some merit, they all seek to do address one aspect of living in a neurotypical world. The problem is that the brain is not so simple and human beings are not so simple. We are complex, we are odd, we do things for no reason at all, we do things contrary to what people expect, we continue to think in ways that push the envelope about what's possible in life. Humans are simply amazing. In order to understand and guide the autistic child toward living in a neurotypical world we have to be as multidisciplinary and as creative as humans beings are. We need a village to guide the autistic child. We need a global village that is ready to undertake the cultural values of the child's family in order to guide the child to his or her rightful place as a valued and respected part of the community.

Respect should be the cornerstone of any guiding method. We cannot set out to break the will of the child in order to treat him or her. Our will cannot be greater or more important than the child's. Too often, it is my way or the highway. Too often, we find ourselves saying there is only one way to do this. Well my friend, there is more than one way to skin a cat. (And by the way I hate that I had to use that phrase because it gives me the heebie jeebies!).

A guiding method should involve many perspectives, many different ways of thinking and problem-solving, many different types of disciplines, and many different types of personalities. It cannot all be about the behavioralist's perception, or the speech language pathologist's perception, or the psychologist's perception, or the counselor's perception, or the educator's perception, or the sensory perception. It has to be all of them. And not all of them are going to agree, but when they all get together and allow themselves to think outside of the paradigm we can come up with some amazing ideas. Finally, the most important member of your multidisclipinary team is the child. Often, if you listen, really listen and if you look, really see with your eyes and heart, and if you feel with your mind and soul, you will find an amazing persepctive right in front of you.

Where is the light?

2008-11-17T17:31:00.004-06:00

As a parent of a special needs child and two typically developing children, I often get bogged down in the day to day struggles and find it difficult to keep my head above water. There have been times that it felt like surely I was drowning and couldn't take another step. There have been days that it seemed like one more thing and this ship would sink. Somehow, someway, I took another breath, put the right foot in front of the left and kept moving. Faith has something to do with it, and I have had to remind myself time and time again, "This too shall pass." Just when I feel as if there is no more left of me to give, I find new strength and am able to lift myself back up above the water line.

When Ewan was diagnosed with Autism, it was a relief yes, that I was not crazy. But there was also grief. I don't say this to imply that I felt all hope was gone or that autism is a curse--I don't believe in either of those things. But grief applies to more than just death. Grief is about loss. And I lost something that day in the doctors office. Just as in the same way I lost something the day the ultrasound tech told me I was getting a boy and not a girl. I was thrilled beyond belief because I desparately wanted a boy, but I also realized I definitely was not getting a girl.

Grief comes in many forms and we all experience it differently. For me, I have gone through stages of shock, blame, denial, depression, panic, guilt, adjusting, and acceptance. And I have gone back and forth all along those stages as a new developmental phase hits or some other aspect of my life is different than I thought it would.

When Ewan was diagnosed with Eosinophilic Esophagitis, I grieved. Our whole family grieved. We had lost a dinner table and a relationship with cheese that we can never fully get back! Everything in our life was turned around in an instant. One day we are happily eating what we want and the next we found our cupboards bare of every food that had given us joy. We were all in shock and that included Ewan. The whole family went through denial, maybe he really doesn't have that. We were depressed over the loss of Doritos and Cheese Its and Goldfish crackers (Skye is still mad about the loss of those!). We felt guilt when we snuck food in to eat in our bedrooms or the bathroom so Ewan wouldn't see us. We went through it all until we finally accepted it as a part of our life. We even accepted the scopes and trips to hospitals as just a part of our life. Our normal wasn't your normal, but we were happy (and still are!).

There is a light at the end of these processes, this grief. It takes time though and when you are still in shock, the light can seem so far away. Whatever you are experiencing, a diagnosis of autism, something like an eosinophilic disorder, or something completely different--a loss is a loss and when you start that journey down the road less traveled, the light may feel as if it is only a pinprick in the dark. But each step takes you closer. Each action has a reaction. Until eventually you can see the light if not touch it and feel the warmth of it on your skin.

Know that we are all together in this as parents and caregivers of those with various needs and abilities. Don't face the dark alone, find support wherever that might be. Contact a support group in your area and if there isn't one, make one. There is comfort in numbers!

A Calling in Life

2008-11-17T11:04:00.004-06:00

I'm also reading the new book Autism Spectrum Disorders in Infants and Toddlers right now and I find the work done by the contributing researchers fascinating. I truly believe that we can see characteristics of autism very early and should be able to diagnose much, much earlier than 2-3 years. Diagnosing children earlier provides families an opportunity to give the child better coping mechanisms, alternative language opportunities such as AAC devices, sign language, PECS, help the family cope with accepting the diagnosis earlier, and overall provide the child a greater chance of doing what he or she wants to in life. I believe in a life without limits and much of that comes from accepting the child, accepting the label, accepting the child's strengths.

From the book:
"An inspiring aspect of the work is the opportunity and privelege of witnessing families overcome very real and very difficult hurdles and come to view ASD as a "blessing in disguise" and an important factor in their sense of calling in life. Living with ASD opens many parents to self-discovery and personal growth that may not have happened otherwise. Countless numbers of families have noted that living with ASD has taught them to celebrate the little things in life, to not take anything for granted, to grow personally, to be brave, to be humble, and to be grateful. Many have an intense appreciation of the value and strength of family and actively reach out and support the health and advancement of hte wide community of families living with ASD" (322).

I know this has been the case for me and my family. If you had asked me at age 18 or 23 what I would be doing in life, you never would have gotten an answer anywhere close to what my life is right now. Ewan has changed my life in ways I can never thank him for. All my children have given me more than I can ever repay. I have a deep sense of God puts us where he wants us, where we can do the most good, where we can affect as many lives' as possible. I believe in things like 'Pay it Forward' and small acts of kindness that may seem inconsequential but change someone's life. I believe in taking the time to know the children I work with and what they like, what they don't like, what their personality is and to find the diamond under the rough exterior. I find the same joy as I would in my own children when a family calls and tells me their child has said a new word or their first word, has used their AAC device, has connected with them, has ate a new food, or tried something new. I celebrate the little things and the small steps, in their lives as much as I do in my own.

Not ready for this yet!

2008-11-17T10:02:00.006-06:00

Spent most of yesterday reading. I ended up reading Children with Emerald Eyes by Mira Rothenberg and I have to say I had quite the time trying to get to sleep last night! So much in that book that I was not prepared for! But there are some amazing quotes in there. My favorite thus far is:

"Have you ever heard the sound of rage when it seems noiseless? It roars with an intensity. It grumbles with a desiccating rhythm. Its voice is dry and throaty. Sometimes it sounds like hell. And its color is white.

Have you ever heard the sound of terror when it is noiseless? It rustles helplessly, like a leaf in a hurricane. It breaks hard, like the thunder. And it has a smell, a smell that shrivels your skin, a smell that makes you break out in a sweat so cold it freezes you. And its color is blue--deep, dark blue.

Have you ever heard the sound of pain when it is noiseless? It howls the loudest and it whines the quietest. It sounds as if it comes from the deepest bowels of the earth--that is you. It shakes with intensity and trembles with its own resonance over oceans of nothingness. And its color is black.

Have you ever heard the sound of loneliness when it is noiseless? It has a blast of thousands of trumpets. It has the howling of hyenas waiting for their prey. It has the howl of herds of starving wolves. Its melody is neither nice nor pretty. And it is gentle and full of fury. It is deep and somber, threatening and pleading. And its color is gray."

Now if that doesn't move you then I don't know what will.

Facebook

2008-11-11T21:57:00.002-06:00

I am officially addicted to my Facebook. My daughter says its cheesy, I say she's cheesy. She says it's not easy being cheesy, but I disagree.

I think we both need medication for our issues...

Teenagers are hell....

2008-11-11T21:56:00.001-06:00

My daughter is squishing the crap out of me right now and is overall annoying the living daylights out of me. Teenagers...can't live with them, can't give them away...

I do love her though despite her chronologically challenged state of being, I just wished she'd go to bed...

Goodnight Skye, I love you, now go away...

Tired but driven

2008-11-06T06:32:00.002-06:00

Here it is at the unholy hour of 6:30 and I am slurping coffee like there's no tomorrow in an effort to wake my old bones up. If there are typos in this post, I can take no responsibility whatsoever--it's the lack of caffeine to the brain that has me lagging behind! Today is conference day--whhooohhooo! I have bound powerpoints till I have blisters on my hands, stuffed bags till I can't see straight, and stayed up waaaay past my bedtime in an effort to make this a great time for everyone--and I love every minute of it!

My voice is cracking from speaking last night to a group of students about autism but in about 30 minutes, I'll be back in the saddle and ready to go thanks to hot caffeinated beverages.

Hopefully I will have energy left at the end of the day to post how it all went!

More later,
Alicia

Cheri hath created a monster

2008-11-02T08:22:00.003-06:00

I'm not sure if Chen Funker realized how much of a monster she has created by this whole Blogger, Facebook, writing / advertising courses, contemplating books, and everything in between thing. So now I have my own blog here, for everything that I can't post to Food Chaining or Autlife (www.theautismlife.com). As I type my first post here I have Facebook running in the background, the ping, ping, ping of my emails rushing in, and my cell phone clinging to my robe pocket. I am forever a changed woman. Gone are the simple days of me reading my Harry Potter or some other wonderful work of fiction and here are the days of Miss Lisha reading Neurology, Child Development, and any other NON FICTION book there is. Careful Fraker, you may just have created a crazy lady.

So here it is a Sunday morning and one would think things are slowing down to where one might take a day to just 'chill'. Alas, Miss Lisha is thinking of ways to freak out her conference goers this week. Think Andrew Zimmerman meets Feeding Therapists. Halloween isn't over just quite yet!

More to come later, Miss Lisha is off to Indy today!