Sensory issues are a part of our life. They are a significant part of our life.
Sensory Processing Disorder (SPD) has changed the way our entire family interacts with the world. For example, I was shopping alone (praise Jesus!) at Costco the other night. I heard a baby starting to wail and I instantly tensed up. Not for the poor little baby – I tensed up because if my son were with me, that noise coupled with the lighting, the smells from the samples, the sounds from the shoppers, etc. would likely set off a meltdown.
And while it affects us all, nothing compares to how difficult the daily struggle is for my son. He has spent eleven years trying to organize his world to avoid the things that aggravate his sensory system the most. For years he has had panic attacks just driving by a fast food restaurant (good for our diet, bad if you need to stop and use the restroom on the road) because of the smells. He pulls his shirt up over his nose every time he opens the refrigerator, just in case there are leftovers. He avoids beaches, park play areas, and even walkways that have sand, often walking in completely the opposite direction if necessary to find a way around it. Halloween costumes, Fourth of July Fireworks, socks, jeans, shoes that are not crocs – all things that are on his list of things to adamantly reject and avoid.
I can’t blame him. For so long, rather than trying to understand and work with him, I tried to force him to learn to cope, accept and just deal with it. So did every other adult in his life.
In summary, it didn’t work. At all.
It wasn’t until I started doing more research that I began to understand my son, and his super responsive sensory system. I began to learn the depth and significance of what has been so painful to him for so many years.
Temple Grandin in The Way I see It, speaks candidly about the sensory issues that accompany her autism diagnosis. She speaks candidly about how little research and understanding there is, for something that she considers to be the most significant impairment in her life.
I agree with her. The one thing that I wish I could alleviate for my son, above anything else, is the way his sensory system impacts his daily life. One of the first things I came across when I started researching SPD, was this list by Stanley Greenspan, in The Challenging Child:
- You could see obstacles in your way, but you could not make your body move the direction you wanted it to avoid them.
- You felt like someone had given you a shot of Novocain in your backside so you couldn’t feel if you were sitting in the middle of your chair and you fell off 2 times as you read this.
- Your clothes felt like they were made of fiberglass.
- You tried to drink a cup of water from a paper cup, only you couldn’t tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn’t squeeze it hard enough and it fell right through your hands and onto the floor.
- Every time you tried to write with your pencil, it broke because you pushed too hard.
- The different smells in this room made you utterly nauseous.
- The humming of the lights sounded louder than my voice.
- You couldn’t focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
- The lights are so bright you have to squint, then you get a pounding headache
- Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
- People’s whispers sounded like they were yelling.
- The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn’t get him off.
- You had to pull the car over 3 times in an hour drive because the motion makes you sick.
When I first read this list, I was shocked by how every day and familiar these reactions for my son. This was our life – exactly.
He went on to write:
“Sensory processing disorders are best treated if caught before the age of 7 when the nervous system is still malleable.”
Before the age of 7??? At that point, my son was almost 10.
Because I blamed myself for his issues, my son did not get help until really late in the game. In fact, when we first started looking for an occupational therapist (the typical referral for sensory issues and their management), we couldn’t find one that had ever worked with a boy his age. They all specialized in the 3-5 year old crowd.
I felt defeated before we even started.
It wasn’t until we finally met our current occupational therapist (after four long months of searching and having disaster after disaster at OT gyms throughout the area) that we began to make progress. She not only feels comfortable working with an eleven year old boy, she enjoys it.
It has been a year since he began occupational therapy and the progress has been nothing short of AMAZING. In the beginning, we created a list of goals. Most had to do with self management and regulation – like when things are overstimulating, how does he work to get himself out of the situation and calm down. Some were around specific areas of his body that were particularly sensitive, like his hands and feet.
He resisted going for three months. Three months of meltdowns, every single Thursday.
Then, one day, it clicked. His therapist was super patient, never forcing him to do anything he felt uncomfortable with, always encouraging him that he knew his body best – when to push it and when to rest.
She might be one of my favorite people ever.
As more and more research is done around this little understood disorder, I am sure more and more recommendations will be made for early intervention. It just makes sense.
I am also sure that it is never too late.
I am sure that with the right professional, caring and committed, my child has made more progress in managing his sensory system than I ever dreamed possible.
I am sure that although we missed the optimal window for treatment, he has been significantly helped and his life will be infinitely better because of occupational therapy.
I am writing this today because in the past week I have seen several articles circulating – some stating that SPD is just a “made up” disorder, some stating that it is too late to treat SPD past age 6 or 7.
For the record, although I am the first to admit I am not a medical professional, I disagree. Across the board. With both.
It does exist. Ask any momma of a child with it – better yet, ask the child or the otherwise diagnosed adult who grew up dealing with it. They will all tell you, Sensory Processing Disorder is real.
Moreover, our family is an example that it is never too late for treatment.
It’s never too late to learn, to make progress, to see real change, and to actually help improve your child’s life.