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Julie's Website
Seating at school

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

Julie's four types of chairs at school

When Julie was in kindergarten, it became clear that her trunk weakness was making it very fatiguing to sit.  She slumped in the little chairs around the work tables and she fidgeted and became very tired from sitting on the floor.  In first grade, the PT and OT at school worked with Julie for half the year before coming up with her chair at her desk:

Julie's chair at her desk at school in second grade

I think this is an old Rifton chair.  It has many things going for it, including the ability to adjust the seat depth angle and height and the back angle.  There is a cut out so Julie's feet can rest squarely on the floor.  The PT found an old wheelchair headrest and attached it to the back of the chair to give Julie head support so she can lean back when she is tired.  In this picture, Julie is also sitting on a "move-n-sit" cushion that is an airfilled rubber wedge that she uses some in the afternoon to help her stay alert, especially during her math lesson.
The trouble is that Julie seems to defy the system by sitting on the edge of the chair much, if not most, of the time!  I think she does this to alert herself and as of this writing, I am trying to figure out if there is something else we can do for Julie in terms of positioning that will alleviate more of her fatigue and back pain.
The next chair has been the most helpful to Julie--the Back Jack Floor Chair.  Do a google search and you will find them for sale various places on the web--it's not a special piece of equipment, but rather a retail item:

Julie's Back Jack floor chair

In elementary school, the class spends at least some time each day sitting on the rug for a meeting or a lesson.  This floor chair is so helpful to Julie who gets tired very quickly from sitting on the floor.  When I see Julie sitting unsupported on the floor, within a minute or two, she is shifting her weight and changing position, trying to stay alert and get comfortable.  She also still tends to "W" sit which is terrible for her joints.
With the Back Jack chair, Julie can't W sit and she is comfortable sitting on the floor either in a side sit as in this picture, or cross-legged.  She can sit with her classmates and not block anyone and it also gives her a bit of a defined space which helps with her sensory stuff.  She has an additional chair in library and music where they also sit on the floor most of the time.
The next chair is used in the cafeteria where the tables only have backless stools attached to the table:

Julie's tripp trapp chair for the lunchroom

This is a Tripp Trapp chair by Stokke (also known as a Kinderzeat).  Julie uses it some of the time this year, I think when she's tired and she knows it.  Much of the time, however, she prefers to sit on one of the stools with the other kids.  She also has a Tripp Trapp in art where they sit on high stools at art tables, but she has been refusing to use it lately, the little stinker.
The last seat Julie uses at school I don't have a picture of--it's a bean bag chair.  This was a big discovery from Kindergarten--in K, they had Julie rest on a rest mat but it was anything but restful for her.  Lying flat on the ground was painful for Julie and she never rested long that way, even if she was tired.  The bean bag chair gives her full body support when she needs to rest and is actually restful!  It also gives full body sensory input which Julie finds soothing when she is stressed and tired.  At school this year, there are rest times built into the day, like a read aloud story for the whole class after recess.  Julie rests in her bean bag chair during those times.  Her teacher has also found it helpful to have her sit at her desk during the lesson, but then to give Julie a clipboard for her worksheet and then she does her worksheet in the bean bag chair when she is tired.