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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