One might think that somehow my experiences would have given me an edge and I would know how to handle the parenting challenges that came my way.  And then I had my son, who is currently 6 years old.....LOL 

 

After surviving a nearly fatal birth defect, two surgeries, and multiple illnesses and medical conditions, I figured we were on our way, with the hard part behind us.  But, as my baby developed into a toddler and then grew into a preschooler, I sensed that something wasn’t exactly right.   I’d always felt T was “different,” both in some amazingly wonderful ways and also in some concerning ways.  But I could never put my finger on it.  He taught himself to add at two, loved to develop and solve his own problems, and could carry on amazingly, stimulating conversations with his father and me on just about any topic under the sun.  Yet, he ignored people when they asked him questions at the grocery store or the bank and often seemed to be in his own world.  At soccer class, his skill level was high and he could kick the ball to hit the target 90% of the time, yet during the full-team practices he walked around the edge of the field, covering his ears and seemingly oblivious to the game going on around him.  He loved to try new foods, would taste anything we put in front of him, yet he wouldn’t eat; he would hold the food in his mouth for hours, or spit it back out.  He loved to run and play with the other children, but lacked coordination and seemed to always lag behind.  To see my delightful and eager boy try to fit in with his peers and struggle to keep up was heartbreaking.  And not knowing what was wrong, nor how to fix it, was absolutely beyond frustrating for me.   Thankfully, several incidents happened all at once, which finally led us finally to one of our answers.  T has Sensory Processing Disorder, also known as Sensory Integration Disorder.  I remember reading the information provided by our Occupational Therapist after our initial visit.  In those pages, I saw my son.  

 

I know that SID is still considered to be a fringe diagnosis or a condition only associated with autism, Asperger’s Syndrome, Tourette’s, ADHD, and other neurological disorders by some, but I think that Sensory Processing Disorder (Sensory Integration Disorder) has finally come to be recognized as an independent condition in and of itself.  

 

In addition to SID, my son has a diagnosis of hypotonia (which is often seen in connection with SID), Developmental Coordination Disorder, and a Learning Disorder.  He scores in the 96-97%ile on his achievement tests, though fluency tests which are timed are much lower.  He has a scattering of scores on his IQ testing around 30 points, with the highest being in Perceptual Reasoning and Speed Processing at the low end, just below average.

 

In the classroom, academically he soars.  He doesn't always get what people are asking him, he doesn't always finish his work, but he learns so quickly that he is able to mask his learning disorder, at this time.  Behavior is another issue.   And that is where your article comes in.   It is absolutely so amazing how much the sensory issues affect these children behaviorally.  And in my son's case, he can verbalize how to make right choices, goes to a social skills therapy group, and REALLY REALLY wants to do well, but in the situation, just falls apart.  And of course, he's got the fact on top of Sensory disorder that he processes slowly, so social interactions can be frustrating to him and difficult to follow. 

 

I used to think that my son marched to a different drummer.  Now I realize that he simply hears violins instead.  People used to tell me that he “thinks outside the box.”  I truly am not sure that T even realizes that there is a “box.”  I now understand that his experiences in the world he lives in are so very different than how I experience my world.  This realization catapulted my understanding of the disorder, but even more importantly, gave me tremendous insight into my son.  T is who he is, and while therapy helps, it doesn't change that. And our job as his parents is to nurture who he is in a way that will help him grow into a functional and independent adult.  It can be frustrating and heartbreaking at times to have a child that is "different." But children's differences can and should be celebrated. It IS all about the violins....and the cellos and flutes and clarinets and trombones. It's when all the instruments play that we have beautiful music.

 

My son is SUCH a cool kid in so many ways and has so many unique strengths, that I hope it will help to carry him through.  But, it's hard when 2-3 days into every group situation, things begin to fall apart for him.

 

Now, if only I could help his teachers and the school understand how to positively interact with him and be proactive, rather than reactive, to his behaviors and issues.  We have tried to get an IEP and tried to get a 504 plan, without luck so far because he tests above grade level.  But, we're still on the case, creating a paper trail.   Anyway, I know this got really long, but I just wanted to thank you for creating such a fabulous site and for all this great information.  And if you happen to have suggestions on dealing with the behaviors specifically in SID kids, it would be fabulous if you could point me in the right direction.

Thank you!!

Val

 

 

Thank you, Val, for allowing me to share your note on our www.BehaviorAdvisor.com site.

Dr. Mac