The last while as I've read blogs, I've come across these lovely ladies (here, here and here) who have written very eloquently about their children and their struggles with sensory issues, or sensory processing disorder. It's funny how when things fall into an easy rhythm, it becomes just a way of life and you begin to forget how you felt back then; back when you were struggling for answers and how to meet the needs of your child.
I haven't written about Jake and Hub's sensory issues much because...well...they are there, but they're only a small part of the amazing people Jake and Hubs are. In a lot of ways I've found that some small changes in our lifestyle has made all the difference, and now it's no longer the first thing we see when we look at each other.
Two and a half years ago, I was your average Jane that assumed (very wrongly) that sensory sensitivities were exclusive to kids on the autism spectrum. For a special needs paraprofessional, I should have known better. I had no idea that they could manifest with dyslexia, ADHD, dyspraxia, and even giftedness. I knew that my husband was picky and that my child couldn't seem to filter things out, but that was it. I knew they were different. I just couldn't put my finger on WHY.
It wasn't until an all out fight with a school district that I began to search for answers on my own and one evening, while on a message board, I saw a board for Sensory Integration Disorder. Curiosity got the better of me and I clicked away, having no idea what it was. I asked a few questions, and at the recommendation of my fellow boardies, signed out "The Out of Sync Child."
That book quite literally changed our lives. Suddenly, I knew what was going on, and not just with Jake, but it explained all sorts of things about Hubs, too. Still, Jake didn't seem to fit into some of the categories as outlined in the book, but he had some very obvious sensory issues that were greatly magnified by the anxiety he was experiencing.
What I didn't know was that Developmental Coordination Disorder (dyspraxia), which is what Jake is diagnosed with, has a strong sensory component to it. I look back now and I see the signs plain as day, and in a lot of ways I am angry that a professional never once suggested DCD, but rather they all pegged Jake as a behavior problem. Behavior that stemmed from a real, diagnosable disorder that they failed to treat. That if I had only known, I may have been able to seek therapy for, but now the window of opportunity is pretty much closed. The hell that our family was put through was completely unavoidable.
What were the signs? I caution readers from comparing, because many disabilities overlap and every child is different.
-gross motor delayed (Jake sat up unassisted at 9 months old, walked at 19 months)
-loved and was calmed by flannel receiving blankets (anything really soft)
-hated loud noises (would cry)
-loved to sleep with a tape of the sound of the ocean (we actually wore the tape out)
-was a happy, content, easy baby
-never colored/barely drew
-even more afraid of noises, was terrified of balloons and helium tanks, strange toilets flushing
-would get totally wound up in crowds until melted down
-slower on stairs, didn't like heights, tripped a lot
-would tantrum upon transitions (ie going home from daycare) for an HOUR
-easily wound up, hard to calm down
-loved anything messy-finger paints, mud, water
-needed strict routine, couldn't handle changes or being hungry, tired, thirsty, at all (meltdown!)
-hugely visual and verbal; learns by doing
-hard time with multi-step directions and wordy language
-bothered by crowds, bright lights, loud noises
-hated the movie theatre, would tantrum upon leaving the pool, hated birthday parties
-needed a very strict routine (bedtime, eating times, etc)
-wouldn't feel cold unless freezing, hungry unless starving, etc.
-easily wound up and had to be removed from situation to calm down
-trouble tying shoes, throwing balls, riding bike, learning to skate, etc.
-trouble counting/learning patterns
-trouble using knife and fork
-hated board games and toys like K'nex (too hard to put together) or Lite Bright
-overstimulated in the classroom
-difficulty with printing/spelling/written expression
-hard time with sequencing and breaking down tasks
Older school age:
-bothered by sock seams, scratchy fabrics, doesn't like buttons on shirts
-bothered by crowds, bright lights, loud noises
-hates fireworks (has a meltdown), movie theatres, birthday parties, crowded/loud restaurants
-found it hard to learn to play the recorder
-visual/spatial activities hard-mapping, some drawing, etc.
-still needs strict routine and very clear expectations
-difficulty with making his bed, dealing with hangers for clothes, etc.
Many of the issues from when he was younger still persist today, but he has either found a way to get around them (ie-rent movies on DVD) or he just does his best (ie-making his bed) and we overlook it or come up with ways to make it easier. I've found that some things have seemed to resolve, only to have new sensory issues pop up as he gets older. It's a puzzle to be sure, but the sensory sensitivities seem to be the key to everything.
So...how did we get around those things, and how do we today?
In my next post I'll share the strategies we used; what worked, what flopped, and what we say to other people who just don't get it.