I am making this post, because I mentioned it in my previous post and some people had some questions on it.
SID is complicated, hard to explain to people, and most people will look at you like you have three heads when you try to explain why your child has not ate in three days "Oh she has sensory integration disorder, you know her senses are all messed up, she gets stuck on one, food , crunchy to her feels like she is chewing on rocks...you know SID?" No. Most people don't know. Most people think you are a loony bin that gives into her childs "pickyness" and if you would just...make her sit there for hours, or not feed her for days..she will give in. No. No she wont. Quite frankly, I am sure if I cut out all the foods Ava does eat, the carbs, the crackers, the pepperoni and bacon and the "one kinda soup with straight noodles only" and the bad junk food, she would..indeed..starve.
Oh Eating. Eating. The dreaded breakfast time, lunch time, dinner time. I can't even begin to explain to you how stressful these times of day are to me. She never liked to eat, never. I remember crying my eyes out because as a 9 month old she refused all baby food. Would go days and days without eating. And I would go days and days of crying. Not knowing what was going on. People need to eat, this little baby of mine..,needs to eat to live, to grow..to start meeting those all important baby milestones.
Along with the eating, she was just a quiet baby. Never made much noise, was late to sit, crawl, walk, didnt use her arms much. I remember voicing my concerns to her dr, that my baby just wasn't very active, didn't reach with her arms, and when she did she would get distracted, almost like a 4 or 5 month old would get lost in staring at her own hands. It was put off. I was just a mom that was worrying way too much. She would eventually eat, because we all eventually eat. She would use her hands when she was ready, because we all eventually use our hands of course.
As she got older she hated going outside, hated noises, started to walk around 17 months, but was oh so careful. She didn't get into things, those locks on the cabinets just weren't needed. She never would climb, run around, she took her time anything. Wouldn't engage with her peers at the playground and would most certainly NOT play on the playground equipment.
Finally after one evening at the park, which was this evening here
I decided that I needed to get Ava some help. To find some answers once and for all. So she could do more than just sit at the park. That next morning I called our local Early Intervention. They were very helpful and soon came out to give Ava an evaluation.
Right away they had a pretty good idea what was going on, and begin to explain SID to me, with also flutters of the word Autism, but she was still too young for that diagnoses. Which indeed came later, as I was told, SID can go hand in hand with Autism.
Ava was assigned a speech, occupational therapist, and a special instructor, as she was very very delayed and failed every portion of the test. She was 19 months and was scoring in the 8-9 month range for just about everything.
That all is another post, so let me get back to the whole sensory thing.
Her OT worked mostly with those issues, we went step by step. Starting with dry noodles in a big container, trying to get Ava to touch them..that took a few weeks, then we moved on to rice and started getting Ava to go outside more to deal with the sounds. With SID kids perceptions are so much higher...the way I remember Kate, her wonderful OT, explaining to me was that it was like if we were laying on the couch reading a book, we could feel the fabric on our skin, like REALLY feel it, we could hear all the dogs barking in the neighborhood, feel the paper from the book on our skin like sandpaper, hear and feel the slightest breeze, hear all the cars going down the road from the highway below, all the while trying to concentrate on the book we are trying to read.
Most of us can block all that out, happily sit on the couch, the tv on, book in hand and read.
Children/Adults with SID have trouble doing that, and need help to cope with their sensory overload.
Our biggest issue is eating. We are getting there, while at a slow slow pace. There was a point where I had just given up. Which is something you should never do, as it just helps things to spiral out of control even more..but there is hope. Ava asked me a couple days ago for "ogurt with the easter bunny on it" meaning she wanted yogurt, the Trix kind, and I have no idea where she even came up with that idea, but my mom ran to the store and bought it for her and low and behold she ate two easter bunny yogurts. She would never touch yogurt before this and would gag and throw up when we would try to get her to eat it.
But she ate it. Granted, its more sugary food, not exactly an apple or orange, but it is something different from breading off a chicken nugget, cheese cracker, or bacon. A step in the right direction.
Therapy is wonderful and its AMAZING when you see your child start to do things that other children have no problem with like playing in water for the first time :
Touching a bubble during OT for the first time
Writing on herself with marker and having no problem with it for the first time
Touching foam was a huge deal for us :)
And maybe, just maybe down the road I will be able to share a picture of Aves eating a steak or something crazy :)
Now the links I promised...
My fav youtube videos explaining SID
http://www.youtube.com/watch?v=6O6Cm0WxEZA
http://www.youtube.com/watch?v=AMTxViXh64w
And my most favorite SID website
http://www.sensory-processing-disorder.com/index.html
Also this is informative :)
I remember so many of those times and how hard you worked with Ava to get her through. She is an amazing little girl with such a wonderful mother. Easter Bunny 'ogurt is a huge step. Yay Ava!
ReplyDeleteThank you Stacey, you are TOO SWEET! Thanks for being there for me through ALL of this :)
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