and all Update on IEP and Medical Intervention

[Guest guest]

Hey , , Rosemarie and All

Received many emails asking about ph and our school meeting... so I

thought it easier to post to the group.

The meeting was OK... It was suppose to be myself and the school RN to

initiate a medical intervention plan however because I sent in a formal

written request for an IEP evaluation, I walked into a room full of

people.... Special ed teacher and admin... principal, guidance counselor....

school nurse, kinder teacher and me...

I actually was pleased to see the group, knowing the eval would begin... and

it would at least give me an opportunity to educate the staff on periodic

fevers and how the disorder effects the child physically, mentally and

emotionally.

I lost it once with the principal regarding emails where she had accused me

of lying about my attempt to contact the staff about my concerns about

ph's desk assignment....

but otherwise I was assertive and professional!!

The medical Intervention plan was discussed and created with implementation

within 24 hrs. The school nurse really helped out.

Testing has begun for IEP evaluation.

Academic testing is complete as is speech pathology. No results given to me!

He is scheduled for PT eval possibly tomorrow, and then I gather OT. He

still needs to see the psychologist. I asked for a copy of the results

BEFORE we meet in summer but I am not sure how that will go.

I will be speaking with the Advocate I have been dealing with, Kate Neale

from Raleigh....

She is really nice and understands the law and my rights as a parent.

I know she told me they have 90 calendar days to complete... and it does NOT

matter that school will be out... it is a federal law. She also said I have

the right to obtain the results PRIOR to the meeting we will have with the

" TEAM " ... however I have already heard excuses regarding being off for the

summer.

So... tomorrow I will seek advise from Kate. Last conversation she advised

me to make sure the school does not put off testing... which they are NOT

doing... so that is good.

She also advised me to request reports individually after each tester

completes the tests and has a report. Again seems like this might be a

challenge.

I do not want to step on peoples toes, however I do want this to run

smoothly... Summer break should NOT be an excuse. ph's fevers do not

vanish because school is out. I believe this should have been done last year

at the beginning of school.... and we would not deal with summer excuses....

BUT....we can't cry over spilt milk !!!

One thing the RN pointed out... and I agree with... The Special Ed team

wanted to test ph while he is at his best. But ph is really smart

and swift and attentive when he is well. It is during his fever episodes

where he loses concentration, becomes frustrated and agitated and loses

focus. So the nurse thought ph should be tested when he is having an

episode... Me too... But the special ed people and the guidance counselor

disagreed.

Where is my special ed friend? Any comments? The doctors notes all state

that the fever disorder is the cause of the behavior change.... ??? Would

love to hear more.

To my friends who have gone through this... and received the IEP and medical

plans... , etc,,, Did you get test result prior to the IEP

meeting when testing was all completed and they present the eval to you or

did you wait until everything was done??

ph dealt with teeth problems over the weekend keeping him home... as

well as hive issues and rashes. He is battling hives all over his body as

well as a rash of some sort on his legs, trunk of his body and arms... They

look like chicken pox without the heads. The doc said there have been lots

of kids with fifths, roseola and unknown viral skin infections... But his is

lingering for days and days. On top of this he is getting hives all over. He

does have a condition causing hives from sweat but he has not been sweating.

No diet change... no anything change.

Seems like his auto-immune system is really acting up... teeth... pulp....

hives ... and rash!

My poor little man!!

Keep him in your prayers!!

God Bless

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group