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 we created Summer Club for myself, my son, and my local autism families.
Summer Club has been about a great many things. First and foremost, it is about fun. Summer 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. Summer Club has no percentages, no objectives, no benchmarks, no requirements other than a smile and a giggle. Summer 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.
Summer 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.
Summer 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).
Summer 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. Summer 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.
Summer 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. Summer Club is about daring to push the boundaries of possibility. Summer 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. Summer 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, Summer 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.
This post has been submitted by one of our readers.