Characteristics

The last time we went to Shea's OT appointment, she mentioned that he had done something that no other kid have ever done in the many, many years that she had been working.

She had climbed up onto the platform swing to secure a trapeze bar and Shea said, "Here let me help you with that."

He held the platform swing for her so that it wouldn't move while she was standing on it.

What is that a sign of?

Empathy? Helpfulness? Conscientiousness? Give & take in friendships?

She thought it was pretty wild that he just said and did what he did without even thinking about it.

Interesting.

Update: Shea's fine motor and Sensory issues

We had the long awaited meeting about Shea getting OT services through the school. He had recently been re-tested with the Peabody for fine motor skills and they also ran the Sensory Integration test too.

There weren't many real surprises; Shea has significant sensory integration issues. He is Hypo vs. Hyper meaning that he needs extra stimuli, big touch, heavy weight, lots of movement. This kind of makes sense because of his "low" lone issue in his face. But, the schools don't give services for Sensory Integration issues; our only chance was to have him qualify for fine motor.

It's all good information but the piece by piece conversation cataloging in detail all of Shea's "challenges" is always really hard to hear.

I wonder why they don't automatically start off with what the kid is good at but they didn't. I suppose they are trying to be economical with time and just jump right in but it always makes me pissed, defensive and depressed as I am sitting there.

So, after all that, Shea's fine motor skills did not test low enough for him to get services so basically the whole meeting was for naught. We did get to talk about a lot of uncomfortable things there were pretty upsetting for me though. Like how Shea is pretty aggressive and explosive on the playground; hitting and pushing.

Because of his hypo-sensitivity issues, they are going to try some new things. For example: they would like to put a big pad out in the playground up against the fence. This would be a "bounce off" area where it will be ok to push, and hit and run into it at high speed. Great. Something tells me that will be a popular area among the boys of the class whether they have "sensory issues" or not. They also suggested a big, thick nylon rope for tug-o-war.

I brought up the sibling issue again. Molly is Shea's prime role model on everything and I know that how they play together is effecting how is playing with the other kids. I had suggested before that Molly could come to the class for a visit so that their interactions could be observed and maybe some gentle suggestions could be made. By someone other than me. I've tried, believe me. I am the broken record but if a counselor or Shea's teacher could talk with Molly and give her some advise I think it would go a long way.

That suggest sort of went flat last year and no one seemed to have the time. But, at this latest meeting, Shea's teacher suggested for Molly to come visit during recess and that she would talk to her. I think we will try that.

The potty training came up again, of course. Apparently they are having no success at school and not really even trying. In P-4, they don't really encourage kids to go potty together so he is getting no role model action there. Last year in P-3 they did but now they are big kids and it is a privacy issue. They also don't want to stigmatize him or make it obvious to the other kids which could be bad or embarrassing down the road. I guess they are right.

So, we are in the same place we have always been but a meeting like this seems to suck the optimism right out of the room. There is something about having all these challenges painted out one by one before your eyes that is very disconcerting.

I know they are doing their best and they like Shea and want to see him succeed. I do value their input and appreciate the time they spend. But, it does point out how rigid this system is, how the bell curve rules and being inside or outside the standard deviation is the prime discussion point.

I like the suggestions of different kinds of play or something new to try. You know, real life stuff. But, when someone shoves a sheet of paper with numbers all over it, I tend to go blank and get irritated. This is my son! Not a data group!

"You know, this doesn't mean anything to me. Please don't waste your time going through all these numbers because it doesn't mean anything. Let's just talk about Shea." I suppose I was rude. I don't really blame them, this is the pool they swim in.

School Conferences

I met with Shea's teacher this week for school conferences. Even though he is in the Developmental Preschool, they still do conferences just like the upper grades. I was relieved to see it wasn't a full blown, IEP discussin' meeting. Just a nice little conference about how he is doing so far this year.

First the teacher did a little bit of marveling at how much more focused, social and talkative Shea is this year. It's true; he is really getting to be a big boy and now knows what is really expected of him at school. But, again, the changes since we started the gluten, egg, soy free diet have been profound.

She did say that his fine motor skills are still lagging and would like to have the school Occupational Therapist run the Peabody test again which measures development motor skills.

He is 4 1/2 and although he knows how to spell his name he can't or won't write it. If we help, he will do it. If we make dot, dot, dot letters, he will trace over them himself. He is also having a hard time cutting out shapes with scissors.

He was given the Peabody when he was 3 and being evaluated for his IEP. He just missed getting OT services by a very small amount. If they retest now, he may be able to qualify for OT services at school.

Even though Shea sees his private OT every week, so much of being a special needs parent is fighting for more services for your kid. Whether your fighting the school district to get services or fighting the insurance company to cover services, "special" parents learn to fight pretty darn quick.

In fact, one excellent example of the passion, focus and energy of "special" parents is the film documentary, Beautiful Son. Parent filmmakers tell the story of their son Beau who is diagnosed on the Autistic spectrum. A very touching and indeed a beautiful film, I caught on my local PBS station. Check out the website for a trailer and more information.

Warning: hanky alert!

Occupational Therapy or fun at Lauri's playground

Bubble lady mentioned to me last fall, that Shea might have some Sensory Integration issues. Ok. What's that?

Wikipedia says, "is a neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste) the sense of movement (vestibular system), and/or the positional sense (proprioception).

I thought I knew what Bubble lady was talking about. I had noticed that Shea leads with his head; meaning he would whip his head around, bump up against you with his head, lay his head on you and push.

I had also recently noticed that he would get overexcited in group situations and "melt down". He didn't seem to have the coping skills or the language to be able to deal with the excitement and craziness of being surrounded by lots of kids like for example; a playground.

A friend referred me to an on-island Occupational Therapist.

What is Occupational Therapy? Good question. Wiki comes in handy again, "use of productive or creative activity in the treatment or rehabilitation of physically, cognitively, or emotionally disabled people". That sounds about right but it just looks like they are having lots of fun to me.

Enter Bouncy lady or Laurie's playground into our lives. Shea really digs this. Laurie has a big platform swing with ropes to hang onto. She has big jumpoleen's full of therapy balls to jump in. She has big suspension climby slings with different tensions to scramble into. She has a hammock with a big cozy pillow in it. There are tubes to climb through and balls to throw. The place is an absolute wonderland in less than 400 sq. ft. Shea would live there if he could.

She also brings many years of experience working with folks of all ages with all sorts of issues. She seems to have a multi-discipline approach, is always bringing up her observations and suggestions and is really the sort of expert I truly value working with Shea.

We really thought he needed this sort of action and interaction during the winter months when outdoor play is limited. And, we were right. He really loves it. Lauri went away for the summer and we missed her greatly but we jumped right back on the bandwagon this fall. It has become a a key component of Shea's therapy.

Thank you Bouncy lady!