United Brachial Plexus Network, Inc.

My son is going on 4 he is robi. He attens a special needs program for developmentally delayed children from 3-5 years old. This program is run by our elementary school. Since his mod/quad surgery in December 2002 he has excelled. So much so that now they say he is no longer developmentally delayed and therefore will be dropped from the program. I have a meeting with them next week. Of course I am pleased with his progress but We know that our children regardless of current acheivements need constant encouragement to develop and use there OBI sides. Has anyone else fought and won battles for continued support from our schools and preschool programs. I remember reading something on this message board about getting Drs and therapists to write letters about the continuous need for help with OBPI children because of their vulnerability to developmental delays and problems adjusting to body growth? Am I stretching things let me know how I sound? Should I just shut up and be thankful my son is doing so well? It just doesn't FEEL right? Thanks for listening. Open to opinions!

The first things that comes to my mind is that you may just want to get your son evaluated by a private PT / OT that don't have any tie to the school system to see what's up or not. Reason being is that I just learned through a personal experience that sometimes they evaluate a delay or not based on whether or not they have someone available for the service. If the delays exists you have the right to get those services for your child. And if the delays don't exist then I guess it's reason to rejoice.

I'm not yet into the school system yet (so I'm not up on all the buzz words and in's and outs yet) because Maia is just going into Kindergarten in September but there must be some way to have an IEP for your child so that other things are watched and other services provided...like an extra set of books at home...one-handed keyboard... extra time for handwriting assignments, etc.

In terms of things changing as the child gets older. I think it's really important to keep up with private therapy - at least for evaluations every so often to watch for changes. School therapists only look at the child in terms of what he/she needs at school - where as a private therapist will watch the child from a medical standpoint.

I don't know if that's helped at all but I gave it a try.

Good luck,
francine