amy,
it is hard to say what is to high impact. my docters told me i could do
things but no sports unless it was swimming and that is the best thing any
way. as far as the hands i would work with teachers to make sure they
understand. my hands are the same way i have to force myself to write some
times but typeing is the best for that. and as times goes it does get
alittler easier but you have to make the teachers understand for the rest of
her school life. they now have computer games to help teach children tpying
skills.


On 1/6/06, Amy Fleeman <afleeman@...> wrote:
>
> Hello!
>
> I'm new here, my daughter (5) was just diagnosed a couple of days before
> Christmas with EDS suspected Hypermobility type. She's been having all
> kinds of problems in school with fatigue, fine and gross motor delays.
> The OT's were sent in to work with her and contacted me letting me know
> something didn't seem right with her hands, and it kind of went from
> there. I mentioned all of this stuff to our allergist at the Children's
> Hospital (she also has asthma, wanted to be sure the fatigue wasn't from
> that) and he spent 2 1/2 hours having her walk, run, moving her joints,
> looking at her body, etc. Then said we needed to see the pediatric
> geneticist.
>
> Finally got to see her, and were lucky as she deals specifically in
> connective joint tissue disorders. She seemed to know what she was
> talking about, but now I'm trying to piece together what some of these
> "don't do's" mean. For example, don't do high impact sports. Well, who
> decides what is high impact? Are things like jumping jacks high impact?
> She has gym twice a week, and I know it's my job to advocate for her.
> But I can't for the life of me find an article or any guidelines that
> give recommendations as to what to avoid. We have a meeting in a couple
> of weeks with the principle, teacher, OT, and PT to discuss what
> modifications need to be made for her in general. I'd love actual
> examples to give them instead of just leaving it at "no high impact
> sports".
>
> Also, she has a lot of issues with motor skills in her hands, and
> fatiguing in the hands. The geneticist asked if she can type yet. I know
> they have computer class each week, but it's more like an introduction
> to computer skills, not typing. I've read as much as I can about EDS
> Hypermobility type and one of the accomodations is limiting writing to
> filling in blanks, or circling answers, or typing. While I want my
> daughter to learn to write, she is already struggling to complete the
> basic sheets (you know, where you write G 10 times, and then g 10
> times). She can't complete them in class, so we work on them at home
> some. I don't mind this since I want her to learn how to write letters,
> BUT, thinking ahead to next year and even another year out to second
> grade, she's got a lot of writing practice and journaling they do. I'm
> not sure if or how to address this at the meeting. We are seeing the OT
> at the children's hospital soon to see if she will wear ring splints -
> but I wasn't given much hope. They said most kids are around 7 or 8
> before they are mature enough to wear them, but I thought we'd give it a
> shot. And if she will wear them, do you still limit the writing???
>
> So, at my meeting, do I request that she get some basic typing
> instruction? So that she can learn slowly over time instead of having to
> do it all at once? Do I mention it, and request that we talk about that
> early next year? Part of me doesn't want to complicate things more than
> they need to be, but part of me knows she is already struggling and with
> EDS it isn't going to just get better and go away... Is it best to start
> now so it isn't' anything new and overwhelming?
>
> And finally, has anyone had success with using a PT in hopes of building
> strength in the muscles to help offset the joint weakness??? The
> geneticist seemed to think (at least at this point) it wasn't really
> worth it, but I want my daughter to enjoy being a kid as much as
> possible. If working with a PT helps at all, and the school will do it,
> why not???
>
> Thank you all for your thoughts, and if you have any other tips
> regarding young children with EDS, or dealing with schools and EDS, let
> me know. :) I do have the booklet from the EDNF and gave a copy to the
> school as well.
>
> Warmly,
> Amy
>
>
>
>
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