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