What I Wish Others Knew About My Son’s Sensory Processing Disorder

My son has sensory processing disorder.

He is curious, he is thoughtful, he is kind, he is inquisitive, he is mischievous.  And he has sensory processing disorder.

To be honest I wish it wasn’t called a disorder as I rarely, if ever, think of Declan as having a “disorder”.  And I wish there was more social knowledge about children with SPD (sensory processing disorder).   The fact is that sensory processing disorder is a controversial topic and so we are still learning a lot about how it effects children and the best strategies to support them.

Before I really get into this I want to make sure you all know that I am NOT a doctor.  Nor do I claim to have all the answers BUT I do know there are others out there struggling through this diagnosis.  For us, hearing the confirmation from the therapist was like having a weight lifted… we always knew there was something and now we had a name and path for support.  If you hear nothing else in this post hear this… YOU KNOW BEST, if think there is something consider testing.

Now that we have this diagnosis we are getting a lot of questions about what it means.  And while I am not the one personally experiencing it I can say I often times feel as though I am… and so I wanted to share some thoughts on what I wish people knew about my son with sensory processing disorder.

HE IS A NORMAL 4.5 YEAR OLD.

Yes, he has this diagnosis and yes he requires support to ensure he is able to be successful through out the day… but he is normal.  He loves trucks, Spider-Man, playing at the playground, riding his bike, watching movies and he loves his friends.  There is nothing wrong with him.  Like your children, he (and we) have good days and some not so good days.  Sure those bad days are more intense, they are more emotional and they are often times more exhausting but he is normal.

IF HE COULD ACT PERFECTLY ALL THE TIME HE WOULD

This is a concept and philosophy I learned from the book The Explosive Child.  The fact remains, if Declan could make good logical choice all the time he would… he would never choose to act poorly.  He is not an a$$hole. When his physical sensory needs are not met Declan has difficulty making appropriate choices but not out of choice.  His body is literally seeking and craving sensory input and when that is not regulated he will seek sensory input wherever he can get it and somethings that means a tantrum, or yelling or talking back.  Despite the fact that tantrums and yelling are bad, they provide a sensation in his body that are calming.  He gets what he is craving/needing at any cost.

Believe me when I say he is struggling way more than we are.  And yes there are consequences for poor behavior despite them being brought on by his SPD.  He does not run the show.  We do, however, take into account his needs when implementing consequences.

HIS INTELLIGENCE HAS NOTHING TO DO WITH HIS SENSORY PROCESSING DISORDER

Declan is extremely intelligent.  His sensory processing is not an indicator of his ability to learn, comprehend or acquire knowledge.  In fact, many studies show that the correlation between children with sensory processing disorder and being intelligently gifted is high.  Not saying my son is gifted; he is too young to be tested.  BUT I am saying that despite his difficulties regulating his central nervous system he is highly intelligent.  He is smart, attentive, inquisitive and craves knowledge.   And while you may ask… “if he was so smart why would he continue to act that way?” My response is this “he physically is unable to act differently at times despite his mind knowing better”.

WHAT YOU SEE IN PUBLIC IS NOT WHAT WE SEE AT HOME

Screaming.  Crying.  Crazy behavior.  Running through the store.  Touching everything he sees.  Picking everything up.  Talking back.   These are the things you may see if you happen upon us in public.

Love.  Cuddling.  Laughter.  Discussions.  Singing.  Calmness. Compassion. These are the things we see at home.

For Declan, his SPD, presents itself the worse in public places... which is fairly common for children with SPD.  The difference is that Declan is a sensory seeker not a sensory avoider.  He wants and seeks a lot of sensory input whether it be sounds, sight, tactile or physical so when we leave the house his body is getting all those things.  And then it overloads and he has difficulty regulating himself.  At home we can facilitate a healthy and appropriate amount of sensory input giving his body the ability to regulate.  So we see the calm side of Declan.  He is safe at home.

So when you see us out… don’t judge.  My son is not a terror.  He has sensory processing disorder.

THIS IS A LIFE LONG JOURNEY FOR BOTH HIM AND US… PATIENCE IS KEY. 

We have been in therapy for several months now.  And it has helped immensely.  From birth we have struggled with parenting him not knowing what was going on but feeling something was “off”.  Finally the diagnosis and now the therapy… and it isn’t just for him.  The therapy, support and techniques take all of us to be effective.  Declan is the center of it all.  But we are the ones who are working to support him 24 hours a day and ensure his needs are met (which is no different than any other parent).  But this journey is just beginning and sometimes we are at a loss.  Sometimes it is hard to send him to school knowing he is going to have difficulties acting appropriately, sometimes I cringe at his behavior during play dates and there are times where I just want to throw in the towel.  But this is lifelong… for HIM and for US.  Slowly but surely we are learning and so is Declan.

Just like every parent out there we love our son.  More than life itself (cliche, I know).  Declan was given to us because we can handle this and we are learning how to support him each day.  Sensory processing disorder did not stop us in our tracks and it does not mean he will face challenges his whole life.  But it is a part of who he is.

With Love,

Looking for additional resources for sensory processing disorder?? 

I have a free resources library that I created for my son with my special education background in mind and I am sharing it. Click HERE it’s FREE!!!