I can't believe that it has been almost a year now since we first saw our Geneticist and got the diagnosis of Ehlers-Danlos Syndrome, suspect Hypermobile Type. I can still clearly remember the relief in knowing that we weren't crazy, that there really was a reason my daughter was struggling with things that other children her age were not. That her teacher and occupational therapist were correct, that something wasn't right with her hands/joints, and that those who said ignore it were wrong.
I will never forget all of those people who kept working with us to find the answer, each helping lead us down the path of discovery. They each gave me a piece of the puzzle, and without each of them I highly doubt we would have gotten answers so quickly.
In the past year so much has happened. We were able to get ring splints to stabilize her joints, which in turn made it easier for her to write. She has a slant board and pencil grip to also help with her writing. Now we are working with her school and the area education agency to put in place more modifications to help her educationally. She still has a hard time doing all of the writing that is really needed to complete assignments, and so we are looking at what other options we have for doing her work. Computers, an aide, etc. I'm so happy with how helpful the school and AEA has been, everyone has worked really hard with trying small modifications and giving her time to see what we really need instead of just rushing ahead and assuming we need more or less assistance than we might really need. I am really excited about our meeting next week to see what their suggestions are and give a few of my own too.
On a kind of depressing note, we pretty much decided that she shouldn't even attend PE class anymore. She was already very limited as what she was allowed to do (no contact sports, no high impact sports, nothing that stresses the joints) but at least she attended with her peers and participated in a few activities. However, given how many times she has come to school already in pain and needed to sit out, and the fact she has been hit by flying balls and the like more and more often lately, (including today) it was decided it just isn't a safe place for her to be. It was kind of sad for me to hear it, but in my heart I knew it was true. I did suggest that maybe we replace that time slot with something like typing, so she isn't wasting learning time. Even we we don't go with an AlphaSmart or similar computer type accommodation yet, at some point she will be so the more comfortable she is with them and the sooner she learns keyboarding the better.
I also suggested that we consider setting up a place she can go and rest and read during recess if she is tired or sore. Currently, when she stays in she can work at any of the centers in class, and sometimes have a friend too. I don't ever want to question her reasons for staying in, plus, if she is staying in to rest or for pain, I want to make sure she is getting rest. So a place to lay and read would be really helpful I think. It would allow for rest, give her extra time to work on her reading skills (something she will really need to help make-up for the motor skills) and it would also not be quite as "exciting" as just being able to do whatever she wants inside. Since there are three recesses (15 minutes twice a day, and 30 minutes once a day) she could maybe stay in one or both of the shorter ones giving her body some rest time, but still have the longer recess to socialize. Another issue we have is it takes her so long to get her coat, gloves, hat, scarf on that she doesn't even get much recess for the shorter ones. Then coming back in it takes a long time to take everything off again. I know it gets frustrating for her too.
So anyway, welcome to our journey - what it's like to be a Mother with a child who has Ehlers-Danlos Syndrome. Hopefully there are others out there who will find some comfort in the fact that they are not the only ones. :)
Thursday, November 30, 2006 | | 5 Comments