So it has been a year since the final diagnosis of Bethlem Myopathy was handed down by Julie's neurologist, thanks to
the results of the muscle and skin biopsy. I have had a lot of time and opportunity to consider what this diagnosis
means for Julie right now and possibly in the future.
For right now, we have been happy with Julie's continued slow but steady progress in her motor skills and stamina.
I often say to others with hypotonic children, "progress is always good" and it's true. With Julie, you have to really
look over 6 months time to see it, but it's there. In the past year, Julie has learned to hop on her left foot and just
a little on her weaker right. She has become better at throwing and catching a ball, at least under the ideal circumstances
of an adult throwing right to her. She can pretty comfortably alternate feet going up stairs, unless she's tired, and
is still working on doing so going down. Her balance continues to improve and is clearly still better in her shoes with
her orthotics than barefoot. Her drawing skills took off in kindergarten, thanks to a group of girls who loved to draw
and Julie's urge to be a part of that group. Her pencil grip still degenerates as she fatigues, but her stamina for
writing and drawing is improving slowly. She can form most of the letters of the alphabet, but mostly her own way rather
than how they tried to teach her in kindergarten. "X" "S" and "Z" still stymie her, though.
Overall, she did well in kindergarten academically and ended the year reading! Despite struggling with fatigue
in her full day program, she learned a lot even when she appeared tired. The beginning of the year was a tough adjustment,
both to the full day and to the new class. About six weeks into the school year, she was starting to adjust finally
and she got sick with fever for a week. Fever always wrecks her stamina for a few weeks after she's well and that set
her back. At the end of October, her teachers, therapists and I realized that she needed more supportive seating to
help her get through the day. A Tripp Trapp chair was brought over from the school district and the kindergarten had
an old Rifton chair that was used for her to sit in during times when the class sat on the rug for meetings and lessons.
Julie's ability to make it through the day increased right away, along with her happiness at school. By Thanksgiving,
she was doing much better and by Valentine's Day, she was really doing well.
Julie's awareness of her physical differences really came to the forefront this past fall in Kindergarten. Along
with her difficult adjustment to school, Julie spent a lot of time at home complaining that the kids at school called her
"a stupid baby." Of course, such talk would not be tolerated and I checked with the teachers to be certain that this
was not truly going on. Around winter break, I finally realized that Julie was telling me this because she thought herself
to be a "stupid baby" because she could not do everything the other kids can do and because she was the only one being pulled
out for PT and OT. I realized that in the absence of the information about her myopathy, her little girl mind had come
up with the only "logical" explanation it could think of...that Julie was a stupid baby. Clearly, it was time to fill
her in! I adapted a book from the MDA website called "Everybody's Different Nobody's Perfect" http://www.mdausa.org/publications/nobody/index.html
to have details about Julie and Bethlem Myopathy. After we read it, I explained to her that the reason she goes
to PT and OT is because she has Bethlem Myopathy and it means that her muscles need help learning to get stronger and to do
tricky things. I also got her a great Todd Parr book called "It's OK to be Different" http://www.toddparr.com/books.html
. Julie didn't talk about her myopathy again for months, but neither did she come home saying the kids were calling
her a "stupid baby" anymore. About two months later, she sat down to dinner and announced that "kids with Bethlem Myopathy
are the special-est!" I guess the message got through!
The other big event of the year was the transition process to move her IEP from the school district's 3-5 year
old program to the elementary school for first grade in the fall of 2004. That involved an entire winter of testing
and observation by a PT, an OT, a school psychologist and a special education teacher. At the end of the process
came a rather big surprise: Julie was not eligible for an IEP! Rather, they intended to give her a 504 plan.
What in the world is a 504 plan? Needless to say, I did a lot of very fast research to find out. It seems that
the "team" found that Julie does not have any need to have the way the teacher teaches changes to meet her needs. Rather,
she needs physical accommodations in order to "access" her education. Without the need for special education in some
way, she is not eligible for an IEP. The 504 plan is a part of a civil rights law that predates IDEA and IEPs as we
know them today. This law guarantees equal access to education for handicapped students. For Julie, that means
giving her physical support such as special chairs, pencil grips, PT and OT, and whatever physical help she needs to learn
alongside all the other kids. The trouble is that it's a very open ended document, so I have had to work hard to make
it as specific as I can. Even so, the "team" was not willing to set PT and OT goals and left that to the school PT and
OT this fall. The one good thing that came out of the process is that Julie will have one on one support for the less
structured and supervised parts of her day, namely getting on and off the bus, lunch, and recess. If she adjusts
well, this support will be withdrawn after six weeks. If she still needs the support, hopefully it will continue!
|Robin, Julie and some bell....