Sunday, April 3, 2016

Autism Awareness Day 2: SPD Story

Though Sensory Processing Disorder is being argued as to whether or not it is a branch of Autism, it has long fallen under the Autism umbrella.  However, having Sensory Processing Disorder does not mean that you have Autism Spectrum Disorder.  In fact, many different disorders that fall under the umbrella of autism are not necessarily red flags to Autism Spectrum.

I noticed something different with my son from infancy.  We called it colicky early on and the doctors blew me off as just being overworked (with two toddlers at home and now, a newborn).  "He's just different.  You've had very easy babies so far." Not true.  My first child was a great sleeper but boy, did she have a temper.  Yes, though, I'd had a very "easy baby" right before D.  D was adamant about only being with me.  I don't mean that he would go to someone else but preferred me.  I mean that he screamed bloody murder if anyone else tried to hold him.  We had eating issues...big ones.  We had sleeping issues...not quite as big but usually related to what he was dressed in, under or if we tried to have him nap anywhere else.  He was not a cuddler at all and actually pushed away if anyone else tried to cuddle him but me.  I couldn't put my finger on it but something was very different.

As a toddler, I noticed it in slightly different ways.  For instance, for his first birthday party, we had to keep it very small because he got very over-stimulated very quickly with any sort of a crowd.  He couldn't stand loud noise, too much stimulation visually or even strong smells.  He had what I thought were tantrums but they would last for extremely extended periods of time....like he couldn't calm himself no matter what I tried.  Again, the doctors blew me off.... "he's just a spirited child....tantrums are normal."  But this was different.  This wasn't a tantrum.  I'd worked with kids for years and I knew a tantrum.  Something was very, very different.

By the time he got to a preschool age, I could tell something was very "wrong."  He couldn't get his body to cooperate with potty training.  I don't mean he wouldn't cooperate and it's not for lack of trying but he couldn't get it to cooperate.  Small motor skills were lacking (though some of this, we later discovered, is that he's ambidextrous and learns everything with both hands).  He had difficulty with large motor skills too, though....riding a bike in particular.  The pediatricians blew me off, blaming the fact that he didn't crawl much and citing evidence that skipping crawling can make bike riding difficult (which is valid evidence but didn't apply here, in my opinion).  The pediatricians scolded me for thinking there was something wrong.  They told me I was being paranoid.  They made me feel terrible for suggesting something might be different.

When he turned five, I finally stopped accepting the scolding.  I was sick of being told it was nothing.  At this point, he had very definitive small motor delays, particularly in handwriting and such.  He was struggling with social skills of any type including how to make friends.  He was exhibiting signs of ADHD including extreme hyperactivity, inability to focus, fidgety, and such.  He was unable to make eye contact.  Obviously the other symptoms from the past were still present but now he would get overwhelmed even easier.  It was very evident that I needed answers and the pediatricians weren't even trying.

I pushed for testing.  I pushed for someone at a professional level to evaluate him.  In fact, I actually put him in kindergarten early so the teacher and staff could attest to the fact that there was more to it than just me imagining things.  It was only after he was evaluated by professionals that we realized that he had Sensory Processing Disorder.  So I started doing some research.... SPD was not highly publicized at that point.  It was a scary prospect reading how some kids reacted and the plights they suffered.  I tried several different approaches that they suggested and we finally found what worked for us..... therapy.  We did speech therapy.  We did behavior modification therapy.  He learned coping mechanisms for how to deal with things getting too overwhelming.  He learned to use his voice to tell someone if it was too much.  Slowly, we started making progress.

The best thing for him, though, was the stability of moving to the mountains.  We found a great school out here (a public school) with fantastic teachers and staff.  He's kept working and I've watched him bloom and blossom.  He still gets overwhelmed and we still suffer an occasional meltdown but they are few and far between and he's better able to manage them now.  His speech has caught up.  His fine motor skills caught up.  He learned to ride a bike.  He learned to adapt to social situations better.  He's thriving and it has made all the difference to have a great school system, a support system of people who love him (and accept that he's "different" instead of shushing him and me about things that he'd rather recognize and deal with).  We don't use his SPD as an excuse but as an explanation, when needed.  We talk about it openly.  It's a challenge, it's not an impossibility.  He has overcome so much.

My point in all of this is the following: Be your child's best advocate.  If you KNOW something is wrong, keep pushing until they listen.  You know your child better than anyone.  If you KNOW something is different, don't listen to them shush you.  Demand testing, change doctors...do whatever you need to do to get the answers you need.  Early intervention makes all the difference.

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