Of Change and Faith--Of a World of Possibility

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.

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

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

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

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

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

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.