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Tuesday, December 09, 2008

No Safe Place

Since Ellie left the preschool at her school and "moved up" things have been off, slipping. I am disappointed. All this talk about moving her up to work with kids that are closer to where she is at cognitively was not realistic nor has it come to pass in the ways promised. The programming in the classroom is so much less which equates to a lot of down time for Ellie. There are just less activities, less variety, less attention for all of them. And her physical needs, which are substantial, are NOT being met. The teacher and the two aids in the classroom are great people and all love Ellie, there's just not enough happening. All the stuff Ellie was doing has not progressed forward in any way except in Oral Motor where things are rockin. But classroom time has too much down time. Ellie is a nerd - she needs more academics, more activities, more learning.

Why? Why? Why? Why couldn't she have stayed in her old classroom for another year? I know she just turned 6 in November, but technically she would not be 6 until February 2009 had she not been born 3 months early.  Why? What did we do wrong? What didn't we do right? I am upset.

Yesterday Dave came home and told me that Ellie was in a stander with the tray in a vertical position so close to her face that she could barely turn her head. I was livid.

What is up with that? How dare anyone do that to Ellie?! If they were trying to get her to look up the better way would have been to use a book or sing a song or get her attention another way. It's dangerous. What if she sneezes and smashes her head against the tray and tweaks her spine? What if her muscles get tight and that tweaks her spine? Some times in the new setting I feel like she is being treated like she has less going on in her brain than she does. There is an old school quality to it like stories I have heard of things happening to the disabled when they were labeled less pleasant things. It doesn't feel good that Ellie being in a position like that is ok to all those looking on and who put her in it. It doesn't feel safe.

I feel guilty. I was working, teaching, trying to be a consultant again and Ellie has been bored and in pain from no one regularly checking and giving her a break from her afo's. We did have a team meeting to address these things in October. But it some of the issues I have now are the same ones. That is frustrating. 

Ellie has taken to folding over forward when she is in her chair. She NEVER does this at home. It's a bad sign. They think she does it because she is cold. She NEVER does that when we are outside with her in her chair when she is with us. I think she is bending forward because she is either try to get someone to notice to take her AFO's off and / or there is nothing to see -she's BORED. She is also sleepy all the time at school, but the minute she gets in the car and we start doing her songs and video she perks right up. Ellie's modus operandi from day one when she is bored has always been to check out via sleep. She is doing that at school. Lately too in the mornings she doesn't want to leave my lap, Dave has to literally tear her away. She used to love school.


Katy said...

As someone who worked in school, school is for the masses--it is not individualized. It is what it is, and what it is is OK, but not great.

I am having similar problems with Charlie during speech and instruction at our home. He acts sleepy and then after they leave, I take him out of his chair and he perks up. I suspect that he needs a change of position. As a child, he needs variety and stimulation. As a person with a disability, these things are hard to come by unless someone helps you. Perhaps talk with the teachers about more frequent position changes. Maybe setting a kitchen timer will help keep then aware of how long she's in each position. Also, since homeschooling isn't really an option for you guys, perhaps you and Dave could develop some educational activities that Ellie could bring to school. She could do these when instruction time drags. As a teacher, the hardest part for me was keeping up with the kids who were ahead of the curve. They really get the short end of the stick in classrooms.

Also, I may be completely off my rocker, but has anyone talked about the possibility that Ellie may be gifted? Do they have gifted classes at her school? Gifted children learn differently than regular children and really need to be around others like them. Your "nerd" might fit the bill. One thing they always reminded me of when I taught classes for the dyslexic--a disablility in one area doesn't rule out giftedness in others.

julie said...

The sleepy/bending forward thing reminds me of Clary in school. Whenever she was bored or being pushed too hard/rushed she would slouch over, eyes half open, and complain about being tired. In pre-school, the teachers put up a generic sign to parents stating how many hours of sleep children need ... I wondered if this was in response to Clary's behavior. As soon as I picked her up from school and headed home, her energy was boundless. Even now homeschooling, she does the "sleepy thing" if I push her too much academically.

I'm sorry that Ellie's school situation isn't great. She sounds like a kid who innately loves school and learning. Time for another team meeting, perhaps?

Anonymous said...

I'm really sorry that things aren't great at school. Ellie deserves much better. To be honest, I'm one step behind you. Moo starts big school in January and the closer it gets, the more worried I get.
What are the alternatives?

Anonymous said...

Is it possible for Ellie to have her own aide (like Eden)? Her own aide could make sure she is repositioned appropriately, provide her with more stimulation, and cue the teacher when she is showing signs of being bored -- and report to you what happens during the day.

Might be worth it to even hire your own person a couple of days a week, if nothing else to "spy" for you, and let you know how things are really going.

I have an IEP meeting tomorrow for my gifted-but learning disabled five year old, wish me luck. The gifted part is much more obvious, and so they don't want to provide needed services, because he is "bright". Never mind that he has fine motor/writing skills at the level of 2 1/2 year old, and can barely write. They blame this on him being a boy, despite the test results indicating a huge delay in this area, and a probably writing based dyslexia. sigh.

Marc said...

Hi Kathryn

I just want to send you my love, my thoughts for the challenges you constantly go through. My 17 year old son Avery has had some challenges over the years with his health and the way he learns and the amazing care and energy you give to Ellie inspires me to take another step with him. I have expected others to step up to the plate for him (as in schools) and it just doesn't happen. Wishful thinking. I guess as Obama infers, we are the change that needs to happen. Thanks for the great blog and I send my love to you and your awesome family.