Thank you all

[Guest guest]

I want to thank everyone for such wonderful responses. It took me a

while to read through everything, but I read it all and really

appreciate it all your kind words of support. I once felt so alone,

but I don't feel that way now...though so far away, you all seem so

close.

The biggest concern I have on my mind are my children (both have

been formally diagnosed with HEDS). My oldest is , 7 y.o. He's

had 3 dislocations and has had so many challenges to overcome.

Origionally he was thought to be autistic, then just PDD, then ADHD,

then sensory integration disorder. Now EDS. He has chronic low

tone needing PT , OT and previously DAFO'S (below the knee braces)

to stabilize his knees and ankles. I don't really believe the

earlier diagnosises. All of his issues appear to be related to low

tone from EDS. Currently he is a regular classroom with

assistance. He has an IEP at school which has been addressing his

educational needs. I am intersted in information about children

with HEDS at school. What special accomodations have people made?

How much effect has low tone had on concentration and academics? He

is such a bright boy, much of his performance just doesn't make

sense.

Brent is 5 y.o. and has had 2 dislocations and multiple hand/joint

injuies. He also suffers from low tone, has bilateral hand splints

and has had OT and PT. We're begining to see problems in the

classroom with concentration and processing. He has been needing

1:1 assistance to complete his work, but like his brother, he is

very smart. We're starting an evaluation process on him now.

My heart aches for them. I try to keep as much as I can very

typical, but they do need accomodations at times. I need to know

more. I see there's a conference coming up this year. I hope to

attend. If anyone has any thoughts or ideas, please let me

know...and thanks for being there.

Pam