Our Journey with Sensory Issues – Part One

I was asked by someone to describe our experience with sensory issues and I figured I would post it here since I have been meaning to write this for quite some time.

In Canada, Sensory Integration Disorder (SID) and Sensory Processing Disorder (SPD), are not as well known as they are in the United States.  Add to that neither one is listed in the DSM-IV (the diagnostic manual a.k.a. ‘the bible’ for diagnosticians, covers all mental health disorders for children and adults)  and it makes it difficult to get ‘professionals’ to take you seriously and give you and your child the help you seek.

If you have reached this point and are all “What in the world is this chick talking about?” – well, I could try to go into detail about SID (I’ll refer to it as this since it is what is written in the reports that we do have which actually reference a sensory diagnosis for our son) but really there is a vast wealth of information at Sensory Processing Disorder Foundation (U.S. based) as well as   Hartley’s Life with 3 Boys (a website and blog of a mom focused on SPD). So please do go to those sites but don’t forget to come back here.

When we adopted C he was three and a half years old.  I was (and had been for quite some time) working in early intervention. I had read up quite a bit on sensory issues and techniques for children I provided service to. Information was fairly scarce but luckily we had the book The Out of Sync Child by Carol Kranowitz and Raising Your Spirited Child by Mary Sheedy Kurcinka.

Amazingly with all that personal knowledge and resources right in front of me – it took a while to put it all together that many of the issues we were dealing with individually added up to sensory integration disorder.  Much of it looked like something else (like ADHD) and our days were such frenetic world winds that reading a book or trying to make a plan was far from my grasp. He seemed to be a sensory seeker AND avoider. Loud noises like the vacuum or hairdryer seemed to actually be painful to him and he would cry and beg me not to turn them on. It took us a few months to realize part of the reason he would act out while shopping would be that he needed to use the washroom but hated the toilets and hand dryers in most stores so he would act out so we would take him home. He hated tags in his clothes and it would take him months to adjust to wearing pants and socks when the weather turned cold. He didn’t like hugs or tickling and just touching him on the arm made him recoil and even sometimes yell out “YOU’RE HURTING ME”, which was always so much fun in the middle of a store or parking lot. But he would also run into people and bounce off them, never seemed to register pain and never seemed to get dizzy.

On one occasion early in our adoption – he fell off the top of the monkey bars and landed on his face before I could catch him (he had poor protective reactions as well). As I rushed over to him I could only imagine what damage had been done – he stood up and caught his breath and much to my amazement just resumed his activities. We soon learned that he would only stop and register pain was when it was accompanied by blood – even then we weren’t sure he was actually registering the pain but rather the visual let him know he  should be in pain and he would act accordingly.

At school he was constantly roaming the room, touching things and people. He licked things and put things in his mouth when he should have outgrown that behaviour at a much younger age.  He had his fingers in his mouth so much that for most of Junior Kindergarten he wore thin gloves to try to help his red and raw fingers heal.  He never seemed aware of where his body was in space resulting in huge issues particularly when lining up at school (which you do a lot of as a Kindergartner). You can imagine that kind of behaviour wreaks havoc in a classroom with even the most experienced and understanding of teachers.

Those early years were hard. We were discharged early from preschool services (long story for another day) and the next step services were saying they had nothing to offer us. School Health Support Services who provide Occupational Therapy to school children were very clear that they would only look at fine motor and daily living skills (like dressing, eating) and they would not provide any sensory therapy or assessment. Without more published studies and Evidence Based Practice, Sensory Integration Disorder (also called Sensory Processing Disorder) was not seen as “legitimate” in our community. I tried to find a private practitioner but at that time came up empty handed.

So we trudged along on our own – piecing some parts of the puzzle together on our own. I did figure out that deep pressure seemed to calm him and he began to allow us to give him “Big squeezy hugs” (bear hugs) that typically resulted in visible calming of his whole body at least for a few minutes. We kept a supply of “real fruit” fruit snacks on hand to reduce the need to chew on his fingers or mouth non-food items. He couldn’t seem to get the hang of chewing gum (and still can’t without swallowing it) so we probably looked like we were training a family pet – constantly pulling out a fruit snack out of our pocket and popping it in his mouth.

In late 2005 we were finally seen at the Child and Parent Resource Institute (CPRI) in London Ontario regarding C’s Tourette Syndrome. As part of the overall treatment plan created with us during our first visit to CPRI, C was referred for Occupational Therapy for both fine motor issues and a sensory assessment. In August 2006 we began the OT assessment and to this date it was one of the most helpful, eye opening services that we have received as a family.

To Be Continued . . . .  Part Two will be up soon:  How Does Your Engine Run?

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One Response to Our Journey with Sensory Issues – Part One

  1. Hola! I’ve been reading your site for a while now and finally got the courage to go ahead and give you a shout out from Huffman Tx! Just wanted to mention keep up the fantastic work!

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