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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.


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!



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Tuesday, January 15, 2019

The Road Ahead (Saying Goodbye To Elementary School)



            It’s Monday morning, the last day of winter break.  We are blessed with beautiful weather in Florida.  This is truly the best time of year to be outside.  We’ve just had breakfast and my son is ready for his neighborhood bike ride.  It’s become our routine since Christmas when my husband and I invested in new bikes.  We set off down the driveway.  It’s been awhile since I’ve ridden a bike and it doesn’t take long before my legs start protesting. 

‘My body isn’t as young as it used to be,’ I muse as I watch my son Ben whiz ahead of me down our neighborhood street.

 He’s excited because I’m letting him ride in the road and not on the sidewalk, but only because I am with him.  “Remember to stay on the right hand side of the road!” I call out to him.

            As I watch his legs pump the pedals faster, I know he’s trying to break his speed record.  He got a speedometer for Christmas.  The digital readout tells him how many miles per hour he’s traveled.  So far his top speed is 18 miles per hour, which he will tell you that he achieved going on the straightaway on Lazy Lane Road.  My son lives in a world of numbers and statistics.  From a very young age he’s wanted to know how far, how fast, and how long it takes to go different distances.  He spends hours studying Google Earth.  One day I glanced over at him while we were relaxing on the couch.  He was measuring the circumference of South America using a tool in the app.  He’d already found the distance of the other 6 continents and he was adding them together as he was going.  Just for fun. 

            My son’s speed, combined with my out-of-shape body, causes the distance between us to grow.  He rounds a curve in the neighborhood and is out of sight.  I fight back the momentary fear that grips me whenever I cannot see him and we are out in public.  I put my trust that he will remember the safety rules in case he encounters a car, or a neighbor walking a dog, or person mowing the yard, or sprinkler….

He is nearly 10 years old and I know he is growing up.  I know that these brief moments of independence are so important for him (and, let’s face it, for me).  When I round the curve, I notice him glance over his shoulder to see if I am keeping up.  When he gets to the stop sign he waits at our designated spot.  He knows all of the stops and never forgets.  My son is a rule follower.  Once he understands a rule he never breaks it. 

            I tell him to ride on to the neighborhood across the street.  We’re almost to the playground where we always stop so that he can swing (and I can catch my breath on the bench close by).  I breathe a sigh of relief as I coast down the slight hill and park my bike next to his. He’s already taking off his helmet and making his way to the swings.   The playground is empty, just how he likes it.   As he pumps higher and higher, I let my mind drift. 

My son is in fourth grade now but already I’m worrying about middle school.  I’ve already been on one middle school tour.  It’s a private school that I believe will be a perfect match for him, but they are small and don’t have resources for children with special needs. I explained how my son is academically on grade level.  He just needs understanding adults who will give him time and space when he needs it.  Each year he is becoming better at self-regulation.  I feel the need to justify myself because I know that getting into this school isn't a given.  He has to pass entrance exams and the number of spots of children they take each year are limited.  Why is it so hard to find the right fit (yet again) for my child?  When I was in middle school, there were basically two schools in my small town.  Where you went depended on which side of town you lived in.  Today, there are so many options for school choice.  There are so many options it’s overwhelming

My search for the right elementary school was long and hard enough.  I'm now teaching at his school myself, and it has been such a blessing.  We have parent tours on a nearly daily basis with families just like ours seeking a place where their child will be accepted and learn to love school again.  Each time I see the desperation in that parent's eyes my heart hurts.  Recently I got a new student and after the first week the parent wrote me the sweetest card.  It said, "Thank you for helping him find his sparkle again."  Our kids need safe spaces to learn.  They need to be able to work at their pace, to feel accepted by their friends and teachers, and to have fun. And the thought of sending him off to middle school frankly scares the crap out of me.

             My mind snaps back to the present as I see his swing slow to a stop.  He’s done.  I never have to tell him to stop swinging.  I’ve always said that he has an internal clock that tells him when the time is up.  He clicks his helmet on his head and asks if we can take Lazy Lane Road to get home.  I know he wants to try to beat his fastest time, but inwardly I groan because that’s another half a mile for my already sore legs to pedal.  But I agree.  I can rarely say no to this boy. 

As we pedal the straight road that will lead us home, I watch as he flies faster and faster.  I bet this will be his best time yet.  Even though the future is uncertain and I will always have my worries, I reflect on how far we have come.  Not long ago, he wouldn’t even get on a bike at all.  He could physically ride a bike, but anxiety took over after he crashed into the middle of the road.  It took years to get him back on a bike. 


Sometimes I forget that the things that he can do today were the very things I was worried years ago that he would never be able to do.  I would stay awake at night worrying if he would ever make friends, play a sport, stay on the carpet during story time, the list goes on and on.  Now he does all of these things and more.   I know our journey going forward won’t be easy, but I know that I have an amazing kid, and I have confidence in him.  We will take each challenge as it comes.


Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!