United Brachial Plexus Network, Inc.

Hi everyone I'm new to this Board but not to BPI injuries, My son frank is 10 and has bpi of the left arm it is totally non functional even after 2 operations. My problem is that the school he attends in NJ has declassified him from the IEP and under the 504 they say he doesn't need any services because as they put it he adapts well at the OT evaul she wrote in her report that it was wrong to state that the arm is non functional and that he uses it as an asst but all the neuro reports say his arm is non fuctional does an OT have the right to make a medical evaul like this and is there any info I can get to back me when I go the 19th of this month to fight them? In the Outreach Newsletter from Oct there was some stuff but it is not enough I need info on secondary ailments. Like the pain he gets from overuse in his right hand from writing to long and back and neck pain from sitting to long. My goal is to get him OT and PT and a one handed typing program. Thanks Mare

We went through the same garbage and the school was just horrible!!! I would contact other organisations to see if they can help. You need an advocate of some kind. Easter Seals helped us but my son decided he didn't want to deal with it anymore and now we homeschool. I know you can win but you have to fight for it. Bets of luck.
T.

If you don't mind me asking how old is your son? Frank is getting tired of all the evauls and re evauls and then what they do promise to get him never happens. Thanks for the info about Easter seals I'll contact them

Thanks T
I will contact them and see what they say. How old is your son? Frankie often says he's sick of his school all the evauls and re evauls and then they promise him something and never go through with it and the way they twist his words around is amazing they ask him if he plays computer games he said yes in the report the ot wrote frank uses computer keyboard at home (WRONG ) uses the mouse but they didn't ask how he plays the games. And our taxes pay for all this . Mare

My son is 9 and this is the first year we put a 504 plan into affect. We had a note from his primary physician, not even the brachial plexus people, stating what type of things he would need. I have a good relationship with him and so I was able to ask him for the note. We then talked with the teachers(3),the nurse and the principal to come up with the plan.
This is some of what we needed.
We asked for an extra set of books at home because he walks to school and the books are too heavy. I also have in the plan that either I or someone else can type the assignments that are to be typed. We talked about the one handed typing program but for now are using 2 hands because he does have some use of the right hand.
Of course, each childs need are so different. We found that this was really the first year that we needed to use the 504. As the work load increased the needs changed.

We also put in the 504 that he be able to print his assignments because it is easier for his left hand to print than to write. I do want him to try to write in cursive but if he gets tired he has the option to switch to printing. Sometimes he writes half the assignment and then switches to printing. This has worked well for John.

This year the school has been quite cooperative overall. We do not receive any OT or PT from the school because I have never pursued it. Who knows maybe that is why they are fine with the extra books it is cheap!!

Who knows next year may be a different story. I have always tried to approach the school and the teachers by saying "how can we work together to make sure that John has a sucessful year". So far it has worked but we take it year by year.

Pam Wiehe