United Brachial Plexus Network, Inc.

Hi Gayle,

I am wondering exactly why they asked for a physician review. Are they questioning whether your sons has a BPI? Are they questioning what his physical limitations are on a medical basis? Are they looking for the physicians opinion on how thie injury may affect him educationally? I am kind of confused. As far as I know, there does NOT have to be a physician evaluation to determine eligibility for IEP or 504. You have a diagnosis from Nath and that is all you need to determine that your child has this disability. It is up to you and the evaluation team to determine if the disability is going to have an educational impact. An independant evaluation by OT/PT is sometimes required on the parents part, if they disagree with the findings of the local school therapists-sometimes that is paid for by the school. I would ask them point blank why a local physicians appointment is necessary, and what they are looking to get from that evaluation. I would also ask where that is a requirement in the laws. Remember you can ask for ANYONE with special knowledge of your child and his disability to be a part of the evaluation, and that would include Dr. Nath, via a written report that would be submitted to the evaluation team.

Gayle, male sure that you are writing everything down. EVERYTHING. with dates. Sometimes it is helpful also to send in those notes and get them signed into your childs records.

Hang in there!

-rich

Gayle:
our medical evaluation was put in the record as Juliana moved from Early Intervention to CPSE. That medical record is from Dr. Shenaq.

#3 on the 504 sheet:
The basis for determining that the child has a disability (if any):
Physician's report and medical diagnosis of brachial plexus injury.

We all know that won't change!

keep fighting!

claudia

Claudia and Rich,
That is what I thought....my goodness, he has had this injury for 9 years and some odd months. It hasn't really changed except for the fact that pain wasn't an issue before, because he wasn't writing so much....and having to hold that stupid paper down....and when I asked him about the clipboard, he said after awhile his arm just aches, she said..."Mommy, it's kinda like what you describe as a toothache" Poor BABY !!!!I really have searched for a doctor here and I am not going to educate every doctor I find here, that is just getting old, it makes me want to slap them. Recently when I took him for his physical the doctor told me that he didn't believe that Brandon had a BRachial Plexus injury , because he doesn't look like the few cases that he has seen.......wow how many has he seen...one besides BRandon. I just found out the Dr. Nath will be in Chicago in November and I will take Mr. Brandon to see him then....and then we will see what the school has to say.
Why do we have to fight for everything with our children....haven't we all been through enough ???? GRRRR
GAYLE

Now granted, Amber is just entering kindergarten, but here's what we've been doing with her 504.

At the beginning of summer, we had a meeting and HER OT recommended continued services for kindergarten 1/week, and I came with 2 1/2 pages of accommodations (asked for everything I could find from this forum and suggestions from emails...THANK YOU TO ALL WHO GAVE ME HELP). We got lots of head nods, "OK's", and "yes" responses, so I expected the 504 to be great. They did agree to a "trial" OT basis since the OT in the meeting representing the school district was retiring and there would be a new OT next fall. I accepted it because I felt confident that we'd continue services in the longrun. I FINALLY received it just before school started in September and all it said was, "don't pull child by the arm or pick up under the armpits" besides the 2 months of 1/week OT that I already knew about. Where were my 2 1/2 pages of items??? I got right on the phone and had a meeting this past Monday with the new OT, CSE Chair (our CSE chair does IEP's and 504 plans both), myself, her teacher, the nurse was there, and the guidance counselor. Mind you, the week before school, I had already had a meeting with the nurse and her teacher to do an inservice with them about her TheraTogs and had gone over every single accommodation that I had requested earlier with them, so they were familiar.

Low and behold, the Chairperson swallowed her tongue, we had a 45 minute meeting, Amber now has OT scheduled ALL YEAR LONG instead of for 2 months, and the new OT highlighted everything on my 2 1/2 page list and asked a million questions. The teacher said Amber seems to take a lot longer to finish coloring her papers than the other students, but is still in the range of normal (her words), but this could be concerning. I think this is because she is already getting so tired. I know it is normal for kids to get tired when they first start school, but Amber is so exhausted by the end of the day, she is sometimes falling asleep before dinnertime, and sometimes doesn't wake up at all until 8 PM! She'll eat a late dinner and right back to bed with no problem. She is so tired since school started, and she went to a 4 day/week preschool program that ran 8:30 - 2:30 PM, just like school does last year and this didn't happen. She's doing so much more "work" now and changing classrooms for different activities (gym, music, art, computers, library, lunch) compared to being in one classroom last year except for playing outside whenever possible.

Anyway...I'm off on a little tangent...OT services are increased, more items are on the 504 plan, everyone is on the same page, and it is well known now (in a nice way) by the elementary school staff that Amber has a Mama that won't back down and will advocate for what her daughter needs. The CSE/504 plan chairperson already knew that from my son's IEP meetings (he has ADHD and has been in special education classes since 2nd grade with lots of accommodations. I'm going to Amber's classroom every Thursday to be a helper Mom, so I can checkup on things, as well.

Here's the items we discussed in her meeting and some things didn't end up in the 504 specifically because they are things that all kindergarteners get so they aren't considered an accommodation, but I still wanted them discussed and I provided this all in writing and it went into her file:
--rolling backpack
--schoolbooks (not applicable yet, but in the future)
--toileting (helping with clothes being twisted afterward)
--TheraTogs (inservice, only those inserviced are allowed to adjust straps if they come undone)
--trouble w/ zippers, snaps, buttons, dressing, etc.
--right hand dominant (injured side) but writes w/ left hand...don't discourage or try to change this...she sometimes switches in the middle of a project which hand she uses...allow this
--extra time for penmanship, coloring, cutting, etc.
--right/left/or both arm(s) may tire easily from compensating or her whole body may tire easily...notice this if it is worse on certain days and what activities she has done (ie. gym class that day and what was done in there)
--possible use of a clipboard if papers seem to be slipping around to prevent her from tiring
--proper chair alignment (needs to be checked monthly as she grows)
--no pulling on right arm (children need to be aware of this in a non-scary way in the classroom
--during bus evacuations, busdriver (including substitutes) need to be aware of not to pull on the arm, lift by the arm, or pick her up by the armpits, but rather lift her by the ribcage when lifting her out of the back of the bus during practice bus evacuations (as needed, other staff in the school should be aware as well)
--decreased protective reflex, so if she falls she needs to be checked over by the school nurse on her head, arm, shoulder, trunk, and pelvis...gym teacher and recess aide should be aware of this as well
--she still sticks her elbow out to the side at times as a habit...remind her (light touch on the elbow or verbal cue) to put it at her side please
--difficulty with complete supination, so carrying items in the palm of her hand (lunchtray, items in classroom) may be difficult...needs some help at times
--help opening items in the cafeteria (milk carton, applesauce container, etc.)
--sunblock on her right arm (even on overcast days) (they made me get a prescription from her pediatrician for this one..ha, ha)
--watch for social/emotional issues as children can say blunt things meaning well but it can be hurtful...please let me know if there is an issue
--do not exclude her from any activity in gym class without our prior consent...if you think it is too dangerous for her please contact us prior to class as your curriculum and schedule are planned in advance

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

Ashley and Gayle,

Keep at it. 504 plans definitely cover OT services, as my daughter is getting OT in kindergarten. YOU know your child best, so if you think something isn't right...research the information and bring it back to the district. Sometimes they say no because they are expecting parents to just slink into the background as many do. Get yourself a parent advocate in your area. The school can sometimes provide you with a list of parents in the district who are willing to do this (and it's free). They are parents with children in the district themselves who want to be supportive for other families. Ask the district for their contact information now becasue meshing schedules can be difficult.

Good luck.

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

Thank you Tanya, Rich, Claudia,
You guys don't worry, this momma won't back down either and they should already be aware of this, so they better shape up. Honestly between all of us, he doesn't need many accomodations, but this writing thing has gotten me upset, and it upset him too. I noticed at scholl the other day too that his seat was much smaller than the rest, which doesn't make any sense since he is the tallest in the class.

Claudia,
I love the idea of her picking her seat. Brandon's teacher doesn't get it and just puts him wherever and then when there are behavior problems watch out. He gets a spelling list last week with 30 words and they wanted him to write them 5 times each. Sure he gets them on Tuesday and he has till Friday that is still 50 words a night, anyone know how else to handle this without screaming LOL !!! He just cries and gets done and takes a motrin. !!!! He is in fourth grade !!!

Rich,
WE should name you the link man, because when I Was having issues with my daughters IEP meetings, I quoted a few of your friendly quotes and I had a meeting the next day !!!!

GAYLE

What about allowing him to type them? Write them 2-3 times instead? Have an accommodation where someone can write them for him as he spells them (like a scribe)?

Also, does he have trouble with keeping up with notes in class? Maybe getting a copy of the notes in class or being allowed to have a computer to type his notes in class. That being said, he should have good typing skills. Otherwise, someone to help him take notes in the classes that are heavy in notes.

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

My dear friends,
You are ALL very well prepared Moms and Dads for the next 12 years,thanks to "LINK MAN Rich". Yes, Yes by all means print out Rich, Claudia and Tanya's posts and read them/present copies of them in meetings if you have to, to cut down on the hedging(BS statements etc. NObody messes around with a parent who knows their Rights AND the Laws. Is there a Parent-To-Parent Training
Program in your area?? They give copies of everything or tel you where to download them. BTW, it really helps cut the "hedging" if you get on one of those Parent Education BOD's. Watch out tho' because it can burn you out![I hate trade-offs!]

YES Gayle, this battle goes on and on every new change of District personnel, sometimes teachers,and School changes. Just keep copious records of EVERY Contact with anybody at School.

Tanya, I wish I had given Casey more hugs; he is a great big brother to Amber. Tell Amber I have our picture together by my computer. I am soo happy she is my friend and we had that good visit together at Camp.

HUGS all around!
Carolyn J

Carolyn J,

She has the picture of the two of you, too. She enjoys looking at the pictures we took at camp and remembering who everyone was and why they were there..."just like her" she says sometimes. Casey is a great big brother for her. They go back and forth, but in the longrum, he's protective and quite loving.

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