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Tuesday, June 11, 2019

Autistic Kids Deserve a Childhood Too!

Ben getting ready to swim during his lessons.

Summer is a time of reflection for me.  Life slows down and I have the chance to really enjoy the simple things in life, including being a mom.  My son is 10 years old.  He’s never been that kid who follows developmental timelines.  He usually lags behind expectations for awhile and then has this huge growth in whatever skill and then all of a sudden has caught up with his peers (or in some cases surpasses them).  My boy who was hard to understand and who was in speech therapy for years won his school’s speech contest this year.  A couple of years ago he wouldn’t even put his head in the water.  This summer, when I enrolled him in swim lessons, after the first day the instructor moved him into the advanced class that is training for swim team and he is loving it. 

I was reading an article recently where the author said that autistic children deserve a normal childhood just as much as a neurotypical child does.  It’s sad that this even has to be said, but it’s true.  Of course, “normal” will probably look different for a child on the spectrum, and that’s okay.  For some reason, so many of us parents feel the need to help our child “catch up” to the norm and so every moment becomes a teachable moment.  I’m a teacher and I appreciate the value of a learning opportunity as much as the next person (probably more) but I also know the value of just letting a child be a child- especially on a weekend in the summer.

Fast forward to this past weekend.  It summer in Florida, so needless to say, it gets hot.  Our local autism group was offering a chance to swim for free at a local swimming pool.  I get emails regularly about similar opportunities (bowling, roller skating, etc) but usually life is too busy.  This time I decided to go for it.  Ben is very interested in swimming since he is taking lessons and the pool in the picture showed a diving board and lane swimming, so I thought it would be a perfect opportunity to let him swim in a new pool.

Let me start by saying I admire local organizations like this one and all the work that they do to provide autistic children these sorts of opportunities.  In fact, I am on the board of a similar organization that does a lot for our local community.  What struck me on this day, however, was that these autistic children weren’t (for the most part) allowed to be just kids in the pool swimming and it had nothing to do with the organizers of the event.  The parents seemed to all have clear agendas for their children.  It was almost as if I could read the IEP goal in their mind as they worked with their child.  One was trying to get her son to put his head under the water, much to the boy’s displeasure. Another child just wanted to walk around the outside of the pool.  The mom followed behind, pleading with her son to get into the water.  A third was clearly working on communication goals, as she was having her daughter introduce herself to every person in the area. I’m not saying that each of these things aren’t valuable activities.  Five years ago, close to when Ben was first diagnosed, I would have probably felt pressure to do exactly what these parents are doing.  But it seems to me on a Saturday afternoon that these kids should just be able to swim (or not swim) in their own way.

While all this was happening around us, my son found an open “lane” and was practicing his strokes. Sometimes he asked me to swim with him (“race me, Mom!”) and sometimes he wanted to swim on his own.  When we got there, the kiddie pool was clearly reserved for us.  I asked the organizer early on if we’d be able to take the kids into the pool that had deep water, and she said that sometimes the lifeguards let the kids take a swimming test and then they’d get to go into the big pool but there was a class that day and so we’d have to see.  Ben took this news remarkably well and kept swimming.

After about a half hour of “lap swimming”, and eager beaver mother approached us.  Ben was taking a moment to catch his breath and was standing by me, asking how many meters per second I thought he swam or something similar. 

Mrs. Eager Beaver got about two inches from Ben’s face and said brightly, “What’s your name?”  Ben answered her.  

She asked him what grade he was in and again he answered.  Then, she brought her own son over.  “He’s about your age,” she told Ben.  “Would you like to play catch with him in the water?”  

“No thank you,” Ben answered and then swam away.  

I could tell from this woman’s crestfallen face that this wasn’t the answer she expected to hear. She looked at me expectantly and I just shrugged my shoulders, “He’s working on a personal best record right now.” Eager Beaver Mom drifted away.

A few years ago, I would have been embarrassed by that encounter.  I’m ashamed to say that I may have even encouraged/forced Ben to play with that boy who he doesn’t even know.  Now I see things differently.  How many of us would go up to a stranger in a coffee shop or a grocery store and strike up a conversation, then ask to go hang out?  Some of you extroverts out there might say yes, but there’s no way I would. I have to get to know someone first, warm up to them, and then once I get to know that person I *might* be willing to hang out with him or her.  Ben is the same.  He has a core group of friends and is well liked by his classmates.  He knows how to make small talk when he needs to and chooses to play when he wants to.  If he doesn’t want to play catch in the pool with a stranger, that’s okay with me.

What that mom doesn’t know are all the awesome things Ben was able to do that day.  One major reason he wanted to come into the pool was to lap swim and swim in the deep end.  He was able to do neither due to classes happening in other areas of the pool. He didn’t get upset or even agitated. After about an hour of swimming I asked if he was ready to leave and he was.  I talked about coming back on our own another day and he seemed fine either way. This would not have been the case even a couple of short years ago.

Every autistic person is different.  I get that. Some require more supports to get through their day and some require varying levels of supports even from day to day.  As Aiyana Bailin put it in her article “Clearing Up Misconceptions about Neurodiversity, “Disability, no matter how profound, does not diminish personhood.  People with atypical brains are fully human, with inalienable human rights, just like everyone else.”  I know I won’t always get it right raising my son, but what parent does?  We do the best we know how to do at the time.  And right now it’s summer, so the teacher in me may make him read 30 minutes each night but besides that, I’m going to let him be a kid.


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