United Brachial Plexus Network, Inc.

Dear All,

My child, age 9, almost three years post mod-quad, and I am starting to see some regression in her arm use: running with the affected arm straight, sitting and leaving the arm idle, when on all-fours crawling with the hand not-palm down and flat to the floor, not choosing to use the affected arm for reaching when she should.

I need the assistance of her school here. I have read about 504s and IEPs, and that utmost importance of the disability impacting AT AN EDUCATIONAL LEVEL -- caps for emphasis. I know that her injury is affected her academically. On her recent report card she received all "Excellents" except in those areas where her arm use would matter: PE, Handwriting, Art and Music.

I wish to apply for those either IEP or 504 PT and OT services, but I need language and the suggestions from others more aware than I am. I need to build a list of how my child's BPI is impacting her academically.

The most confusing matter to me is that when she is in SCHOOL, she is in an academic environment. Then the scenario of how her injury impacts her is very large: socially -- recently she is being teased; psychologically -- only recently she is asking me if she can really become good at certain activities...

Anything that you could offer would be greatly appreciated.

Just,

Wondering

In Nj you have to have the child evaluated by the child study team and they decide if your child needs services Frankie was given a teachers asst in kindergarden and 1 st OT but after that it all stopped they said he was to well adapted, Talk to the teacher they file a report to the child study team giving class room input. Hope this Helps Mare

Rich in MA seems to be the "expert" here that many of us go to for help in this area. Here are some suggestions.

--rolling backpack
--additional set of schoolbooks for at home so your child doesn't have to carry them back and forth
--address any braces/splints that he/she wears in school
--assistance with dressing for outdoors (zippers/buttons/gloves/hats) or after using the bathroom
--hand-dominance/penmanship (ask the school OT to evaluate)
--extra time needed for penmanship therefore extra time for tests to write (in higher grades, penmanship is a big part of grading, so this may need to be addressed)
--if papers are slipping and your child is tiring easily, consider a clipboard with a non-slip surface on the back to hold the paper still (school should provide)
--proper desk/chair alignment
--safety in PE class and playground
--no pulling on injured arm (including when doing evacuation drills to get off of the bus through the emergency exit)
--address any posture issues if there are any (involve OT)
--sunblock to be applied to injured arm when going outside (we had to get a prescription written by the pediatrician for the teacher or nurse to apply it)
--social/emotion issues (these can crop up)

These are some items we spoke about in our daughter's 504 meeting and got OT (inclusive) once/week.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

Wow! Thanks. Good advice.

Even after some very decent intervention/development years post-op, I thought: Wow, we are good, this kid is ready for life. This summer she was doing way beyond my expectations. But, now, Man, it has come like a sudden storm. She wants to run, and she is very fast, but she will NOT use her arm.

Way beyond,

Wondering

My son is turning 4 and i have fought everyone i would suggest contacting the school board and try to explain your child's disability and try to educate them to help you. always be nice and try to encourage people to feel like they are really helping you sugar goes a long way

Years ago like 8 the Outreach had an article that really helped frankies school to understand bpi and problems that come with it maybe someone knows how you can get a copy of that. Mare