Wednesday, February 02, 2011

Not horrible

Well, the IEP meeting wasn't nearly as bad as I had been expecting. It was actually on Tuesday afternoon - I spent all morning on Monday thinking that it was Feb 1st, but of course it wasn't! But it was good, because it meant that I was able to get in touch with Catherine (ABM therapist) once more before the meeting to let her know of Kirsten's plans for Avery. Catherine sent an email to both Kristen and I explaining again the reasoning behind wanting Avery to walk as little as possible. In fact, I think I will copy and paste the letter here because it does a good job of explaining why what probably appears to be a step back is actually very beneficial.

Dear Kristin, dear Josephine,
My apologies for the delay in getting this email to you. I hope it is not too late for tomorrow's IEP.
I just wanted to write down my goals for Avery and how I believe we can meet them and what we should avoid doing.
Our goal is to allow Avery to develop a walk that can be sustained even when she gets older and bigger. The ambulation patterns she has developed so far cannot be sustained into adulthood, as I am sure Kristin has seen over an over in her experience with students.
Because we are counting on Avery's neuroplasticity to design our new walking pattern and because neuroplasticity is competitive, whatever pattern is used the most will eventually win or at least significantly delay the construction of the new pattern. This is why, while we are working on developing the new pattern, we would ideally like for Avery to not walk at all. I understand that it is not realistic, however, the closer we get to not walking until the skills that Avery needs to walk well are in place, the better.
So, Kristin, I really like the idea of pushing Avery in the buggy and, when she find one, have her use the W/C for long distances. I also get your point that a walker is better in the playground, because the W/C does not work there, and because the walker gives Avery a chance at some very nice social interactions as her peers help her navigate the obstacles.
I do not understand, however, the use of the quad cane in the class room. I thought, from our conversation, that you wanted to have a look at it in order to rule it out. I seem to remember that we talked about allowing Avery to crawl within the classroom, or use the walker to go to the restroom because of hygiene concerns.
I have not seen Avery with the walker, but my pediatric PT mentor, who is a trainer in the Anat Baniel Method and referred Avery to me, saw her in her quad canes, and thought they would be detrimental to Avery's progress. So, is there any practical way for Avery to move about in the classroom with her walker only?
As you know, I am very aware of how difficult it is to ensure that Avery gets all the modifications she needs within the constraints of the school environment, but I believe it would make a big difference for her, and for your progress if she did not use her quad canes at all.
Please feel free to discuss this further with me. I really appreciated your including me into this process and hope that we can find a solution that works for everybody.
Catherine Wycoff, PT, DPT, GCFP, ABMCP

Kristen did get this email before the meeting, which meant that when we got there she had taken the parts about the quad cane out of the IEP. So that was good. She doesn't seem happy at all about our decisions though, and from a traditional point of view I can understand how this would seem like a poor choice. She made a point of emphasising in the IEP that we, as Avery's parents, had made the decision to require less walking from Avery, and that this wasn't her idea. 
We let her know that Avery should be getting a wheelchair in the next few weeks. Fingers crossed that it won't take longer than that... Kristen says that we shouldn't get our hopes up about it arriving that soon - she says she's never know them to arrive in less than 8 to 12 weeks. This is what I have heard before, but when I asked the woman at Tender Hearts about how long it might take, she said that it sometimes takes up to 3 weeks for the company  to ship the wheelchair after it's been ordered. So  I suppose we'll just have to wait and see. This is the one we're supposed to be getting:

It's the Quickie 2. It won't look quite like this of course, because we're ordering it through an Anthem approved retailer which means that I had to go through about 4 pages of options. I still don't know why everything has to be so complicated. I swear I must have aged about 10 years in the last 3 weeks with everything I've been worrying about and trying to figure out. This wheelchair should be pretty great though. The one last thing that is frustrating is that even though it's "lightweight", it still still weighs almost 30lbs, which seems like a lot for a child who only weighs about 42lbs to be hauling around. That, and I still don't know how much it's going to cost....


SuzanSayz said...

Three steps forward and two steps back kind of thing. Sending more speedy, happy thoughts your way!

Anonymous said...

How extraordinary it is that parents are so often the last ones to be allowed to know what is best for their children. I'm sorry that everything has been such a struggle, Josephine, but you were born with a firm and determined spirit - it has stood you in good stead so far and will continue to do so.
We'll now pray for a speedy delivery and Avery's usual patient adaptability to all that she has faced thus far.

Kristen said...

That Kirstin sounds so antagonistic. That would frustrate and age me too! I really hope the wheel chair comes quickly...and may the price not knock you over...unless of course for the reason only that it's much less than you ever imagined.

Anonymous said...

We looked at the Quickie aswell. They sure are a great chair.

Angela said...

Thank goodness for you and Catherine because you two seem to be the only ones with common sense in this situation.

I am glad you are getting a chair and I am sure it will be the best thing for Avery!