Well, we're figuring a few things out...

We had Bug's teacher conference last week, and talked about several things. I hate to say it, but anymore I dread her conferences. I love her teacher, being in her room, volunteering, but man - conferences are just so hard. There everything is in black and white, what is good, what is bad, and for us, all the questions we still haven't found answers for. ;)

For starters, while she hasn't come home in the last couple of weeks with stomach aches, she has spent a lot of time not feeling well. (fatigued?) We have been doing twice daily Previcid as well as well as morning protien bar snack and sometime mid-afternoon snack. I feel at this point there is nothing more on my end that I can do. So, that leaves us with looking around the classroom and at the structure of her day again, and what could be changed on that front to help her more.

Her teacher did say she is spending a lot of time when she isn't feeling well in her bean bag chair. I asked if she did work in it, and she said some. I suggested that I bring in a travel lap table to see if she would do more in her bean bag chair with a good writing surface. She liked that idea, so I've got to look around for the one we used to have. It had nice padding on the bottom so it shouldn't rub her funny.

I still think that part of the problem are the chairs she has to sit in during class. They don't offer much support. I need to see what happens with this bean back/lap table and then possibly talk to her OT and PT about options for next year. I am also pretty sure that the cold weather makes her feel worse, which kind of sounds weird, but then again people with arthritis complain about joints in winter so maybe it isn't so strange.

Homeschooling has been on my mind more and more lately. In many ways I can see the benefits, but in other ways I think it could make things harder. Right now she has so much acceptance from her peers, I'm afraid if I remove her from that and then replace her with them later down the road it would be really hard. Also, the fact of the matter is that she likes school. She enjoys it. If we could just get around her body not keeping up with her mind... I think the reason I keep revisiting the idea is because I feel like so much of the work we do at home already, because she can't keep up in class. We do it in so much less time too, because I just write while she does the work to get the answers. I wish I could get her an aide... I think she would learn so much more. But we haven't got enough of a case yet to justify that, which is ok, because who knows, we might get this typing thing and seating all worked out and find some extra energy soon!

Gotta run, Bug just came in and isn't feeling well. She said she feels like when she doesn't feel good at school. Just doesn't feel good all over - like I said, I think it's fatigue.

Oh - I did want to add Bug has started e-mailing her best friend from our old state. He is e-mailing back and so they are both getting great typing practice in a fun way! :)


Christina said...

Proper seating is so important for us EDSers. The school district is legally required to provide appropriate assistive devices, including seating. A recent study of non-EDSers found that the best position for maximum vertebrae/spinal comfort is reclining at 135 degrees (halfway between laying flat and sitting straight up.) It spreads out the force/weight over a large portion of the body. The 90-degree-angled seating position so favored by the Victorians has turned out to be harmful--though if you are corsetted, you have no choice but to sit ramrod straight inbetween fainting episodes. Additionally, a seat molded to the body's contours will also help spread the force (learned that at the EDNF conference.) I compared a standard gel or viscoelastic foam cushion and a cushion very recently designed to apply the most force to the padded, fatty areas of the butt and much less to the boney parts. The latter was sooo comfy, and it wasn't even a custom-designed cushion (those are even more comfy.) I hate sitting in standard chairs, because there is just no way for me to be comfortable. I squirm through church and squirm through meetings and when I go back to school, I will squirm through class. Perhaps a number of the children considered hyperactive are just too uncomfortable in their miserable excuses for chairs? A nice computer program can design an ergonomically correct chair for perhaps (maybe) $1000 in design cost and hardly any more for materials, but they keep churning out painful chairs by the millions. I will admit that and ergonomically correct chair for a normal-size person won't fit a truly obese person, but truthfully, obese people can't sit in many chairs to begin with...Well, enough of that rant!

I hope that your daughter can find the equipment/schedule/environment that works best for her! Here's to determined parents!

Kelly said...

Oh my god this sound exactly like me. I have EDS and am a student as well. Sometimes getting through the school day is very difficult, but luckly most of the staff members are very good to me and the students are pretty accepting too. I'm always in pain right before it snows and I have major stomach problems too. I can't believe how much this sounds like me. I thought I was the only one in the world. Thank you so much and good luck to the family.

BugsMom said...

Kelly -

You are not alone! The more we go through this and the more I blog (as well as read online) the more I see other young people feel a lot like my daughter. Knowing this doesn't really make things easier, but it is nice to know that I'm not crazy, and that these things are real and EDS related. :)

Kudos to you for being proactive and looking online for yourself to learn more about EDS and find support! I wish you all of the best!!!