Thursday, January 10, 2008

Sensory Integration, revisited

Atticus has Sensory Integration Dysfunction. This is not earth-shattering new news to us; he was first diagnosed at age 3, when it became painfully apparent that many of the little tics and quirks that we associated with his personality were quickly spiraling into the category of crippling behaviors. Already somewhat familiar with what I was seeing in my lovely little boy thanks to a relative whose son struggled with the same issues, I was quick to find help. A full battery of tests performed by a handful of doctors and therapists revealed what we had begun to suspect: SID.

I can't tell you how grateful I am that this diagnosis was made so young, and was so thoroughly treated. For two solid years, Atticus met with his Occupational Therapist on a weekly basis. Together, the three of us slurped through straws, gliding on massive swings, rolled in shaving cream. Oh, and we brushed. We brushed, we brushed and we brushed. I am fairly certain that he has the best OT in the entire western hemisphere. This lovely young lady came to my son's first soccer games. She gave him cards to celebrate milestones. She cried with me in the harder moments, and rejoiced with us in brighter times. At the end of two years, she discharged him and promised to be an ongoing resource no matter where we found ourselves down the road.

Most people who meet Atticus now have no idea that when he was four, he would not play in a kiddie pool in the summer months because he hated splashing water. They might raise their eyebrows at his tightly-cinched belt and marvel at his ability to tolerate very low temperatures without a coat, but they'd never guess how walking barefoot on a carpet used to send him into meltdown mode. I credit his OT, our family's aggressive approach to treatment and lots of consistency with creating the adaptive skills that Atticus uses today to get by.

SI is an ongoing, management-type disorder. It is never truly "healed" or "outgrown" or "gone." We have known this, and yet are always amazed when we start to see relapses in Atticus' behavior.

Like right now.

I realized on Monday that I have been saying, "Son, get off the floor," far too often to my boy. For some reason, this didn't raise any red flags in my mind--you know, it never does. I guess I am so used to cruising through our days that I miss the subtle hints of trouble ahead until I smash into the roadblocks and have to stop and take stock of the whole mess. Thankfully, there was no catastrophic crash this time. It was just the budding of a mild annoyance that I was dangerously close to venting on a kid who kept purposely banging his shoulders on door frames every time he walked into a room. Warning sign, anyone? :-)

We started back on an aggressive sensory diet on Monday, and are seeing the results. This is a time consuming endeavor: once every two hours, I have to work in a twenty-minute brushing, jumping, crashing, lifting, splashing, rubbing session. The up-side is that Mr. Wiggles hasn't fallen out of a chair in three days and has finally stopped rolling on the floor every time he feels he needs a little neurological stimulation.

Usually, these retraining periods--which are literally like tune-ups for Atticus' neurological system--only last a few weeks. At the end of that time, I'll realize that he is becoming more irritated by the brushing, or doesn't quite throw himself into the crashing sensations with as much vigor as he had originally. That's when I know that he can resume life with his own toolbox of coping skills, sans my tweaking here and there.

I admit that I wonder from time to time at what point those coping skills will begin to outpace my intervention; when will he learn to see his own "flare-up" coming and head it off? Fifteen? Twenty? I really don't know.

Until then, SID is a part of life here. Jumping jacks and all.


Paula said...

Hugs to you MG! Thanks so much for sharing this. I read every detail of your post with my own dd in mind. She's quite a handful but we've never had her diagnosed with anything. I'll be praying for you as you spend extra time over the next few weeks helping him get back to his "own coping skills."

KH said...

I'm a grown-up SID person. I don't know where on the "SID" scale I would have fallen as a child. I was never diagnosed with such a thing when I was young.

But I...

was a very picky eater (but eat a much wider variety now)
can't stand light touch
much prefer deep massage type touching
cannot tolerate touch to my face aside from kisses - no hands touch my face but my own
tags must feel right or off they go
socks must be on just so
I was very "oral" for a very long time -- chewed my pencils down all through high school and college and still chew my nails. Can't stand gum though. And at the same time, I can't stand certain things in the mouth like when people chew on paper or tear things open with their teeth.
I was 8 years old before I could ride a 2-wheeled bike, never mastered a cartwheel. On the other hand, I was a skilled equestrian.
I have a difficult time swallowing pills.
I always sat in a "w" position. I have low tone and hyper-flexible joints.
I do not like plastic to stick to me - like tape or a plastic bag. For years, I could not stand the feel of a Walmart type bag, but now I can tolerate them though much prefer paper. I don't even like to wear a nametag stuck on my clothing, but stuff touching my skin is much worse. I had to wear a corsage on my chest near my face that my MIL gave me at my bridal shower and I thought I was going to have a nervous breakdown.

Many of these things remain true today, but almost all are to a lesser degree. I can't tell you exactly when they changed because it was gradual. Some things are more hard-wired than others. The food thing has gotten WAY better once I was in college and post-college. Still can't cartwheel :-). Like I said, I can tolerate the handling of Walmart plastic bags nowadays but yikes if a piece of it comes off and clings to me -- eek! I still don't like my face being touched. I can touch things with my face, but I can't receive the touching - make sense?

Looking at myself, I can't say that my behaviors were ever to the point of crippling though. Perhaps others who knew me would disagree though? I also don't see the pattern of flare-ups in my life that your son experiences. Things seem more constant, though gradually less extreme over the years. I would say I saw the most changes though post-college, which for me, was also timed with my marriage. My husband, being the incredibly patient and understanding man that he is, has helped me so much by loving me so completely and unconditionally -- quirks and all. And he has helped me to find humor in it too and to be loosen up and laugh (and love) at myself... and he only chews his gum when he's at work. :-)

Great job to you and your dh for seeking help for your son and working so hard to help him develop coping mechanisms and learning as much as you can about it and your son. It sounds like you are giving your son the kind of love and understanding that I have received for the past 7 years from my husband...and I think that's the best thing gift you could give your son.

Carla said...

wow...that is so my kids. I always saw my childrens behavior as quirky but had never heard of SID until I found out a cousin of theirs struggles with it. We have suspected ADHD and possible ADD in another but the syptoms of SID are very obvious in all of them in various degrees and ends of the pendulum. I have the girl who HATED to have her hair washed, still hates to have it combed, won't wear socks..or most other clothing bugs her, She picks, scratches, chews everything...
My son is a sensory seeking over load. Always upsidedown, thowing himself around, touching smelling and caressing everything and everyone. I had to learn early on how to parent my 'quirky' kids and not worry so much about what other people think.