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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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!

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Growing Up with Sensory Differences

            

              My son is getting older.  He reminds me of this every day.  Lately he’s in a big hurry to become an adult.  He wants to make a ton of money, move to New York City and live on the penthouse suite (because it's the highest part of the building).  He has great ambitions.  He wants to be an architect and design big buildings (specifically the tallest buildings in the world).   I’m sure it’s hard for many moms to watch their children grow up.  We know as parents that we have to give our children more freedom and independence, but when your child has sensory differences, it all becomes a bit more complex. 

            Ben is at the stage now where he functions in what I like to call his “sensory comfort zone” for a good deal of the time.  We know what it takes to keep Ben regulated and, more importantly, Ben knows what he needs to do for himself to help himself.  He comes home from school, puts on his music, sits in his game chair, turns on his back massager, and decompresses from the day.  When we go to a big event, like a birthday party, we know to have down time the rest of the weekend.  We've learned a lot through trial and error, so most of our days are smooth sailing...until life throws a curveball.

            Most of us know to look for negative triggers that can cause a meltdown, but it’s easy to overlook a different kind of trigger.  I’ve learned that when Ben is eagerly anticipating an event, this is a time to watch carefully, because if that event doesn’t go exactly the way he envisions in his mind, it can produce a meltdown.  I think he lets his guard down in a way, because he is so excited for this special thing, and when trouble comes it catches him off guard.  It’s almost like he’s offended that something so special and dear to him wouldn’t go the exactly way he expected.  The more excited he is about the event, the larger the potential meltdown.

            I was reminded of this during the last week of school, when I designed a special project for my class called Geometry City.  I’m a teacher and I am blessed to have Ben as one of my students.  If I’m being completely honest, I designed this project with Ben in mind because I knew he’d LOVE it.  The children were to design their own city (measuring perimeter and area to get the math part in) and then they could build their city in 3D.  Ben was stoked.  The excitement built.  Finally the day came when I put out the materials for building.  My classroom was a buzz with children working.  I became involved with helping other children so I didn’t notice the agitation growing in Ben as he tried to make his buildings stay together.  He was attempting to fold cardstock and stack the rectangular prisms higher and higher.  As the building toppled to the ground, he lost it and began talking angrily.   Once I realized that a few soothing words and offers to help weren’t going to do it, I left the class with my assistant and took him into a quiet room.  I had Ben lay on his belly on the floor as I rolled an exercise ball over his back as I was taught to do years ago by an OT.  We talked and I continued applying deep pressure, and eventually he calmed down and we were able to go back in and finish the project.  I kept a closer eye on him for the rest of class and he was able to recover and take direction and support. 

            I want Ben to get to the place where he can be completely independent.  I want him to recognize those triggers in his brain and body and be able to calm himself down.  I have to remind myself of how far he’s come- that he is able to self-regulate for over 90 percent of the time.  This gives me hope that one day he’ll be able to do it without me. 

            Ben has grand plans for his adulthood.  At nine years old he is already building his future up in his mind with great excitement.  I want him to go for his dreams but I also want him to be supported and ready so that he doesn’t crash and burn.  Whatever the future holds, I know that he will always have a support team there to assist him along the way.   In the meantime, I’m trying not to blink and to enjoy him as he is today.

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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In His Own Time

            I can still remember when I was a new mom, nine years or so ago.  Milestones and schedules were so important to me then.  Before Ben was born, I would read the book “What to Expect When You’re Expecting” and I would study the month by month guides, envisioning my baby crawling at six months, walking at a year, and talking not long after. (Spoiler alert- Ben did none of those things on that time table).  I think that all parents have visions for the way their child’s life will go.  We naturally assume they will learn to tie their shoes, swim in a pool, and learn to ride a bike.  Nine years ago, those activities seemed like a given in my mind.  It never crossed my mind to assume that my child would have difficulty achieving these childhood rites of passage.  It never occurred to me that some of these things might not happen for my kid at all.

            Fast forward nine years into the future.  Fast forward to an older and (hopefully) wiser me.    A few weeks ago Ben rode his bike on his own for the first time.  The old me would have been completely freaked out about the fact that Ben didn’t show the slightest interest in riding a bike until he was nine.  The old me would have looked around when Ben was five at all the kids whizzing around on two wheels and wondering why mine stuck on his tricycle.  However, experience has taught me that Ben will do things when he is ready. 

When Ben was four years old, he rode around the neighborhood on a tiny bike with training wheels.  We spent part of our summer in Indiana, and I will never forget the day that changed Ben’s feelings about bikes forever.   That morning he wanted to ride his bike through the my parent’s neighborhood as he had done every day for the past two weeks.  In his rush to leave that day, he had forgotten his bike helmet.  He set off, slowly picking up speed as he rode down the sidewalk with me trailing behind.  Suddenly, I realized where he was headed and jogged to catch up.  He had never gone that far before.  I watched helplessly from the top of the hill as his bike quickly picked up speed.  Ben's squeals of glee quickly changed to screams of terror.  He flew out of control and landed in the middle of the road, head first.  I raced down the hill but it was too late.  I remember picking gravel out of his hair.  I remember his blood on my hands.  I should have stayed calm- I am always calm, but in that moment I panicked.  I left the bike in the middle of the road and carried him home, yelling for my dad who was mowing the lawn and so he couldn’t hear me.  I think my yelling is what stayed in Ben's mind the most.  He felt my panic and made that panic his own.  Thankfully, Ben didn’t need any stitches but long after the physical scars healed, the psychological damage remained.  A cloud of anxiety hung over bicycles for years after.  We tried encouraging bikes, and Ben would oblige us for very short distances, immediately abandoning the bike as soon as we would let him.  Finally, five years later, Ben rode a tandem bike with his Nana while on vacation and found his confidence again.  A week later he watched his best friend outpace him in the neighborhood as he struggled to keep up on his scooter.  The time had finally come to try the bike again.  At his request, we found Ben a blue bike of his own.  They don’t make bikes his size with training wheels, so he would have to learn to ride and balance with two wheels.  Thirty minutes later, Ben was flying around the neighborhood with no help from either of us.  Ben’s story of learning to ride a bike was wildly different than how imagined bike riding would go for him.  I had visions of little Ben riding around on training wheels until the day came when Dad removed them and worked with him until finally, he sailed off into the sunset.  But the older and wiser me has learned to expect the unexpected.

            Swimming under water was the same.  For years Ben refused to get his face wet in the water.  We tried swimming lessons every summer, even shelling out big bucks for private lessons once, but to no avail.  We tried a “tough love” coach that got him to put his head under, through tears, but Ben would refuse to do it after classes were over.  We tried all kinds of goggles and special gear, from nose plugs to fancy diving masks.  Finally, one summer when he was eight, on a perfectly normal day, Ben decided to go under the water all on his own.  Then, he decided to swim across the pool.  Within an hour he was swimming all over, seeing how deep he could dive.  And he hasn’t looked back since.  

            It was the same with tying his shoes.  Ben showed no interest in tying all through kindergarten, first grade, and second grade.  Finally, his third grade year dawned and Ben decided it was time.   He worked with a buddy at school for a day and now he can tie his shoes like a pro. 

            I tell you these stories of my son to remind you of this.  Don’t get too caught up in the developmental timetables that tell you when your child “should” do something.  It’s important, of course, to pay attention to delays and to keep an eye on progress, but don’t become consumed with your child being different than the other children around him or her.  As one wise blogger mom, Jess, likes to say, “Now is not forever, and never is a load of crap.”  Your child may not achieve that milestone today or even tomorrow, but that doesn’t mean he or she will never get there.  Ben constantly surprises us by what he suddenly decides to do.  If you asked me a month ago if my kid would ever ride a bike, I would have said, “Probably not.”  But today he rides all over the neighborhood.  Never underestimate your child.  Try not to put too much pressure on him or her to do something on your schedule. Let go of the vision of the child you expected to have and focus instead on the amazing child who is right in front of you.  Love your child just as he or she is.  Your child will thank you for it!

Welcome to the Voices of Special Needs Blog Hop — a monthly gathering of posts from bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have child or student with special needs.  Want to join us for next month's Voices of Special Needs hop?  Click here!  

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