Hey Amy,
I'm Julia and i'm 17 and currently a sewnior in High School. i was diagonsed
with EDS type
3 two years ago. I really understand what your daughter is going through, bein
gi have
gone through the same. Last year i got an IEP and that made the world of
difference.
Push for an IEP in live in Minnesota and i was able to get one no problem. I
have an IEP
but it is under the "Other Health Disabilites" meaning i dont have learning
disabililtes. You
should be able to get one. So really push hard for one it will honestly make a
world of
difference. It you have any other questions feel free to email me.
Julia



--- In ehlersdanlossupportclub@yahoogroups.com, Amy Fleeman <afleeman@...>
wrote:
>
> Hi guys!
>
> I could use some guidance. My daughter (6) was diagnosed with HEDS last
> December. The OT's were already working with her weekly at school, which
> they continued through the end of the years. In March, the school PT
> also started working with her every other week. The PT has commented on
> her weak hips, and was planning on stopping in and doing another
> evaluation when school started. The OT's were going to do the same, also
> asking me to write a list of things I'd like them to work with her on,
> and they were talking of getting her an alpha smart for this year.
> (note, we were not on an IEP last year, but it does appear we will get
> one for this year)
>
> So, on my end we got ring splints on all ten of her fingers, and she is
> wearing them all. (a huge deal consider she just turned 6!) I also keep
> her in the pool almost daily and continued her swimming lessons as
> recommended. She was never tired in the pool, which was wonderful!
>
> She started 1st grade last week, and the OT's stopped in yesterday to
> check out the new splints, adjust her desk, and see how she is doing in
> class. Her teacher is very concerned because she is already unable to
> keep up with the other kids. She is getting almost 10 hours sleep a
> night - so I know that isn't the issue. They did her back-to-school
> testing to see where she was at, and she didn't miss of the questions on
> Kindergarten material, which is great, she's right where she should be.
> But she can't keep up with the class work.
>
> I asked her what her favorite "work" in school was, and she said
> coloring. It made me so sad, as her coloring work never even close to
> done, or like the other kids. Yet it's her favorite thing to do. I think
> that says so much, and I wrote her OT's telling them that.
>
> So - as it stands right now the teacher and the OT's are observing her
> for two weeks, "before any decisions are made as to how much work to
> expect of Savannah". My heart is breaking, because mentally know she is
> right up there with the best of them, but she is too tired even with the
> ring splints helping support her finger joints to output it. I want to
> help, but I am not sure what to do.
>
> I thought the alpha smart would be a good tool, and it still might, but
> it sounds like she just doesn't have energy, and it requires energy to
> type too. What's making her tired? Joint strain? I just feel so bad for
> her...
>
> What do I push for at our meeting? I want her to learn as much as
> possible, but will she learn as much if she is given less work? Should I
> push for oral work? That would require her visiting the special ed room,
> which at this age I don't think would be a big deal (it's not a class,
> more of a place for additional assistance), but it is removing her from
> her peers and making her even more different that she already is.
>
> Currently her teacher is sending home what she isn't finishing and
> having us do it at home. I am ok with this for the next two weeks, but
> I'm putting my foot down at that point because I don't think it is fair
> to her to have extra work that she can't finish because of physical
> issues at school to be forced on her at home. Ya know? We already have
> about 40 minutes of reading, spelling, and words to learn a night. I
> think especially given her fatigue that is more than enough.
>
> Thank you all for any thoughts/input. You're a great resource!
>
> Warmly,
> Amy
>