So, I'm running a little behind...

I don't have my copy of the final IEP yet to share here, but I did want to update that the meeting went really well and I think we're off to a good start. My daughters teacher was sick (I missed having her!) but we talk a lot anyway so I was ok with having the meeting without her.

That said, the OT, PT, school nurse, and principle were all there. The meeting lasted about 1 1/2 hours and went very smoothly. There was nothing that I disagreed with, and I think everyone did their best to try to come up with helpful solutions.

A couple of things that really stood out in my mind were that the nurse wrote in that the school janitor (who is also a sweetie) would keep the hallway near my daughters room really dry and clean. Since she falls easily this was a great suggestion! He will keep an eye on that area first which I think was such a nice thoughtful, and easy thing to do. It's all those little things that add up!

Another interesting thing was the PT talked about how my daughter isn't' aware of her own self. For example, running in gym can be dangerous because she will run right into people! LOL So one of the things she is going to work on with her is self-awareness, as well as learning her own limitations. It is great to try things, but currently she will keep going and going and going and not want to stop until she can do it - and she needs to learn there is a point where she should stop, and get help to do them. She is also weaker on her left side vs. her right, and they will work on that. Plus learning some more balancing. There is more but that has to wait until I have the papers.

The OT is going to work on strengthening exercises, but again it's a fine balance between how much before it makes work in class even harder. She is also going to start trying out different technology with her to see if she is partial to something. I believe they are starting with the ibooks. Then there is something similar to the AlphaSmart, and then the AlphaSmart. So hopefully she will take interest in one.

They are doing to continue to modify her classroom work load because of the fatigue. She is going to be taught how to tie shoes with her ring splints on. (goal for that is end of this year) We are going to get a basket to go under her desk to help hold some of her stuff so that she can get things in and out of her desk more easily (it was so full it was hard for her) and she can also keep her slant board in there. They are going to finish putting grips on her crayons, and test out self opening scissors. We have written in that she may rest during recess if she is tried or not feeling well. State testing next year will be done in class with an adult to bubble in the answers for her.

I can't remember if I've talked about some of the simple things that they've already been doing for her, like giving her math counters that slide across a paper vs the blocks that snap together. Giving her blocks to do some spelling with instead of writing. I'm blanking right now on more of it. :)

I had also ordered a special bean bag chair from King Beany (10 year guarantee!) that is filled with foam. It arrived today. It is going to be in her classroom for her to rest and read in when she isn't feeling well or is tired. I can't wait to see how she likes it!

Other things that we are doing that the OT was pleased out... We buy what she calls "adaptive clothing". All that means is that we buy pants without buttons and zippers as they are really hard for my daughter to do and make her even more independent on others. We get shoes with Velcro or we insert those curly shoelaces that don't require tying for regular shoes. We make sure her clothing is loose so she can get it on and off more easily. It was nice that someone can see the effort we go to with some of that basic stuff, because let me tell you, it isn't easy finding clothing without zippers and buttons for a girl in size 7 clothes! :)

Another thing I am excited about is I found someone to help me make some custom mittens. My daughters ring splints make it hard to find gloves or mittens that fit well, or don't pull her rings off when she is removing them. I was going to have a pair knit, but she was telling me that it is so expensive it should be a last resort. Instead, she suggested that I find an old wool sweater and wash it until it "felts". Then we can custom make mittens around my daughters hands with her rings on. I have a friend with an old sweater, so I cannot wait to get going on this - Mittens that fit - what fun!!! It's totally about the little things in life for me. :)

I guess that's about it. So much for a quick update - I think I've written a book!


First off, quick note about yesterday. My daughter was pretty tired, and was having stomach aches off and on all day again. They were at school and home. Food didn't help... She was too tired to do reading last night, or the schoolwork she hadn't finished in class. I just decided to let her rest and take the night off.

So - onto today! I am SO excited - it's our IEP meeting! I can't believe how excited I am, but I'm just so curious to hear what everyone's ideas are. I will write them here later in case they are helpful to others. I got to speak to the OT today and answered some questions about how things are going at home. We talked about how my daughter struggles with getting dressed, how some mornings she is almost impossible to get up and going, and about how we deal with homework, chores, etc. I told her that we have thick handled lightweight silverware for her to use (thanks Target!) and that she likes to use the swiffer to dust. It's lightweight, causes her to put her arms above her head (good for working on balance and hip strength) and doesn't require a lot of stress on her hands. We talked about how we do most of our homework on Sundays, so she isn't already tried from a school day, and that she likes to help wash her hair only at the pool, where they have a seat she can sit on in the shower. It was a nice chat, and I'm hoping that we were able to help eachother. :)

I'll post an update later tonight or in the morning! :)

Tummy Troubles

Yesterday was a reminder of something we tend to struggle with - tummy troubles! One of the things that is so hard about EDS is that while you suspect that something is related, often there isn't a study yet to prove it. So, while lots of people who suffer from Ehlers-Danlos Syndrome will report that they have problems with chronic constipation and acid reflux, there isn't real solid proof that this is being caused by EDS. Of course, logically it makes sense, since both the intestines and stomach are made from connective tissue, but that isn't good enough to prove it. So, in the meantime we treat these symptoms with my daughter not knowing if it's going to be for her whole life (suspecting so) or if there is some small chance that someday things will start settling down.

Yesterday she had tummy aches off and on throughout the school day. They actually had started the night before. Part of me wonders if it was in part due to the adjusting back to being in school after a long break, and on top of that doing extra work with the OT and PT for evaluations. I wonder if her body was just more fatigued and that caused it. But again, I can't know that to be a fact, even if in theory it makes sense. So, we just dealt with it.

Since I was in her room half of the day volunteering I was able to let the office know that unless she got sick or started a fever to just let her rest. I hate doing that, but if she came home everytime she had an ache or pain she wouldn't be at school that much. The best I can do is acknowledge her pains, and try to lessen them. I thought the resting time was a good way to do that yesterday, so that's what we did. She made it through the day, and got a decent amount of work done.

Today she slept in really late - I think she must have gotten about 13 hours of sleep. Hopefully that will help get her feeling a little better again. I'm crossing my fingers tomorrow she sleeps like that too!

It's Been Almost a Year...

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. :)