School, Recess, PE, and my breakdown

As I mentioned in the post before this, our local PT offered to come to the school and meet with our PE teacher, principle, and the AEA's PT. This meeting was "unofficial", held to get a better idea of what is going on at school in PE and what the AEA PT was doing with Bug. It was also so our PT (Julie) could share her concerns about Bug and what she is struggling with.

First of all, I need to mention that Bug has been out of PE and all recess for almost 2 months now. She has been going and helping kindergartners and first graders with reading during recess, and loved it! I had suggested her helping other students with reading to her principle as an option as it would make her feel good to be the one giving help instead of getting it. He thought that sounded great, and set it up. Bug has really been happy about it, still sad about missing recess, but not sad like she was before we set this up. During PE time she has been allowed to work on a laptop so she wouldn't have to just sit and watch her peers. Anyway, even with having those things to do she still was missing those activities (what kid wouldn't) and wanting to go back. Our PT was torn on what to do, as she still felt her ankle was weak but she also knows that exercise is good for kids. The question is/was, could she get that exercise in a safe way at school?

The meeting was ok, I think that every person there really wanted what was best for Bug. Of course, it is still a struggle to agree or figure out what that is. We ended up with starting her back into PE this week with the gym teacher watching her carefully and trying to place her in positions/activities that wouldn't be as fast-paced. Then on the non-PE days, she would go to the two 15 minute recesses with the teachers out on duty instructed to keep an eye on her that she didn't start running around. Next week she would do recess on the PE days too, and if all went well then she would start participating the following week in PE, both 15 minute recesses, and also the 30 minute recess. I think our PT was on the fence about this plan, but willing to give it a shot since Bug really really missed those activities.

When we saw her for PT therapy after school yesterday, she said she would be happy to write a more detailed note to the staff about what was and was not ok as far as sports/activities. You know, something addressing the age-old question of "are jumping jacks ok?" and so on. I am SO excited about this, as for the last 2 years we have wanted a list like this but haven't been able to get one. She also said she would e-mail the PE teacher to talk more about what activities he had planned so she could get more specific about what might or might not be ok for Bug while doing them. All of this is great - and I'm so happy that she is willing to do this!

The other thing we talked about at PT was the fact that Bug's AirCast had actually ripped across the bottom over Spring Break to the point where Bug said it wasn't helping. Our appointment with an EDS pedi who specializes in Sports Medicine and Bracing isn't until June 29th, and they don't have a waiting list to get you in sooner. So, I wasn't sure who to get a new brace from, or what to get. The PT said there wasn't anyone local that we could see in the meantime, and so we decided I should call the poor geneticist about it again.

Today I made that call, and found out a couple of things. First off, I should keep calling the Sports Medicine Pedi at least weekly to see if we can grab a cancelled appointment. Secondly, she thought we should try an elbow sleeve brace from the drugstore on her ankle. When I expressed concern about that not being stable enough, we got into even more detail over what exercises Bug has been doing in PT and where her progress is at with them. After hearing about that, the genetics nurse said "Well if that's what's going on with her ankle, she has no business being in gym class!" She went on to tell me she should be having modified PE, and some other stuff I won't get into on this blog. (it's nothing bad, don't worry) She agreed to talk to our PT about Bug so they can share what each of them know and come to some sort of conclusion I can then share with Bug and our school. She also offered to speak to the school/AEA if needed, and write any medical letters to support the requests/recommendations.

So - I hung-up with her and called leaving her phone number with the PT. I did all of this in the office at the Middle School where I have been working since January as an associate with special needs kids. (I love my job by the way. It's wonderful to help other kids!) As soon as I hung-up I couldn't help it, I started to get teary eyed. One of the secretaries saw me and asked what was wrong, which then opened up the floodgate. She gave me a hug, which caused me to let my guard down more, causing me to cry more, at which point the principle walked out and asked if I needed to talk. Before I even thought about it, I just said yes, and the next thing I know I'm sitting in his office talking about how hard it is not knowing how long this is going to last, what services we need, how to be nice to all of the staff/AEA and still effectively communicate how important it is to help Bug at the same time... I told him how hard it is with all of these Dr.'s trying to communicate through me, but I can't seem to get them all together to talk. It's no one's fault, it's just hard when we live so far away and have Dr.'s all over the place. I told him how I feel foolish, for just having a meeting yesterday about PE and deciding one thing, only to find out the very next day another Dr. said no way. Not to mention the fact I had just written Bug's teacher a note this morning thanking her for her patience while we worked all of this out, and how we should be in the clear through the rest of the year. Now just an hour later it's all changing. And worst of all, I had just kissed my daughter good-bye not 10 minutes before this call, and she was so happy to finally be able to go to recess again. She was on cloud nine, and now it's all at risk of being taken away again. How do you explain that to an 8 year old in a way that she can not only understand, but accept????????

The principle (aka my boss) was nice about it all, he let me gush on and then told me while he didn't personally have any advice, he thought I might want the phone number of the head of the special education department in our area. He told me that even he might not have any answers, but that he's a great guy and might have some suggestions for me. I thanked him for the number and tucked it away, I think that I might give him a call after I learn more from the PT and geneticist. Even if I don't do it now, it's good to have for later.

I am so emotionally tired tonight. I feel so over-stimulated. I feel like I'm at a dead end yet I know I'm not. I know that all of this will pay off in the long run, but right now any sound in the house is just too much. I need to write all of these thoughts, emotions, fears, and questions down while they are fresh in my head, not only as a personal release for myself, but also in hopes that my honesty about the issues we face can help someone else.

That said, I'm done with this post, but will still be doing another one tonight after I get my children to bed... Stay tuned!


the4browns said...

I've read so many of your posts, and your story sounds so much like ours. My 14-year-old daughter was also recenty diagnosed with EDS Hypermobility Type. She knew when she was 2 that there was something wrong, but it took years to find out the answer. I know now they don't generally diagnose EDS until after 5. As she got older, the focus was on "fixing" the dislocations/instability problem, but it wasn't until surgery number 5 (this year) that they suggested we go to genetics again. She is a 9th grader now, but has not been in PE since elementary school. It was clear in 1st grade that there was something "wrong". In middle school, she had 5 operations for chronic knee dislocations and ankle instability. In terms of mobility (i.e. walking), she's doing quite well now. Last August, I got her tested for food allergies, and found out she was allergic to both dairy and wheat. Aside from all of her absenses the last couple of years for her surgeries, she missed MONTHS with vomiting, diarrhea, etc. We found out a couple months that she also has Celiac Disease, so she is now completely gluten-free & dairy-free. The doctor told us that auto-immune dissorders go hand in hand, and EDS and Celiac are both autoimmune. My daughter is doing really well right now. Still no PE, running, etc, but compared to the last few years, doing so much better. If you have not, I would encourage you to find out about Celiac too.

the4browns said...

Each time I read one of your posts, the flood gates of my mind open. When my daughter was about 8, I remember spending hours trying to teach her how to do a cartwheel. She never was able to learn how.

My daughter has been in PT since she was 4 (for 10 years). She "graduated" from PT earlier this week ~ we'll see how that goes. She does about 45 minutes of PT exercises religiously every morning. Her overall muscle tone seems pretty good right now.

Straightening out her diet has really made a huge difference in her life. In addition to the stomach pains, vomiting, etc, she had a lot of bloating (belly distention) when she was eating wheat. She has dropped 20 pounds since August (she's 5'3", 119 pounds). I'm sure not carrying aorund the extra weight has to help with her joints too.

Incidentally, when she was in elementary, I ended up getting her a 504 plan. They went to "standards-based" grading here (meeting standard, approaching standard, etc). When I taled to our PE teacher, it was clear to me that she was never going to be anywhere near approaching the PE standards, much less meeting or exceeding them. For her 504 plan, I requested that she be graded on participation and attitude. At that time, she wasn't having dilocations yet.

One last thing ~ we have a whole collection of ankle braces. I think we've tried them all. My daughter didn't like the neoprene sleeve because it didn't offer much support. The braces she liked best (because they offered the most support) were lace-up ankle braces. We found out from our orthopedic doctor that they were available at the local sporting goods store (GI Joes). I think they were about $20 each.

My daughter's having an easier time this year in terms of PE etc. In our school disctrict, you can get HS PE credit for participating in organized sports. The principal is going to allow her to get credit for her PT and home exercise program, so we keep a journal of what she does. Otherwise, PE would still be out of the question.

BubbleGirl said...

I understand that it must be very hard as a mother to watch your child go through this. I am 21 years old, and I was diagnosed with EDS 7 years ago. My parents never knew why I was in pain, and a lot of people ( at home and at school) thought I was faking it for most of my life, until I was diagnosed. I can tell you from personal experience that the fact you know what is wrong and accept that it is real, is the best thing for Bug. Even without all the PT and doctors appointments, the fact that she can tell you things, and you listen to her seriously, will be the biggest help.

I am very proud of you, and greatful that you share your experiences, so that we may learn from them.

Remember that it's okay to cry, everyone has to let it all out sometimes.

Sending warm wishes and lots of hugs your way,

Laura Schmitt said...

the4browns - that is really interesting to read. My Bean has severe gluten intollerance and dairy is not as severe, but we have to stay on top of the dietary stuff for her. (no artifical, not too much sugar, not too much dairy...all cause GI issues for her). She is diagnosed suspected Celiac based on food trials and blood work.
So...the Dr. at the U told us that the EDS diagnosis is not an autoimmune and would not be connected to her other autoimmune issues that she has battled. So which is the correct answer? Interesting that they say different things, but it does seem that there is a connection here!

Back to the original post, I'm sorry about the stress. I understand how you can feel with setting everything up and then changing it through the school. I feel like a nut sometimes, myself, trying to communicate to everyone and feeling like I just can't reach everyone, not enough time, etc etc etc. I hope she is back to recess soon! I would love to talk to you, by the way. We just got Bean's ring splints yesterday and I have questions about them, the teachers have questions, I just could use a little support network here! We are in CR area, but we travel to the U of I for this stuff. If you don't mind emailing me, you can use sleepingbean at yahoo email address. Thanks!

BubbleGirl, when I was younger, I was like you 7 years ago...lots of pain, people thinking I was faking, me wondering what was wrong with me! It's much better to KNOW! Glad you got some answers!

Queen Slug said...

While she may not be able to do gym, would she be able to still do recess? Even if it's just the 15 minute ones? I'm sure there is a way for her to do that, then she'll get some "run around" time, but still taking care of her joints.