It's a therapy life

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.