Re: Wish us luck

[Guest guest]

Today is the big day. We are going to have yet another PPT meeting for Patty

and I don't know what to expect. With Patty's diagnosis of CHARGE she got

tested at Perkins school last April-complete, speech, OT PT hearing, visual,

Psych... We and the school got a verbal report in May. June we had the PPT,

we teleconferenced with those at Perkins. When they gave their reports we

hung up the phone only to be told we could go no further until all had read

the reports, which were quite lengthy. Remember, they hacd the verbal summary

over a month before that. At that meeting I asked for only two things but was

turned down until they could test Patty on their own. The school PT, OT and

Speech teacher had never met Patty before so they could not make

recommendations (Patty was transitioning to high school). We reconvened in

August, one week before school. On paper it looks as though we went over the

report. Not really at all. We spent 1 1/2 hours fighting on whether or not

to do a tech eval. They finally gave in. That was done. This was done by

someone without experiance with deaf/blind or CHARGE children. She also only

saw Patty for 2 hours in the Resource room. Time limit on this meeting.

The letters started coming. They would write, I would write....So, we

had another meeting to sign for a Futures personal plan, at our request, and

for a teacher for the hearing impaired, which she has not had since third

grade. The school OT and Speech teacher performed their own evaluations.

Remember, they do not know about or have worked with Patty or deaf/blind

children, or CHARGE. Then the Futures plan which went great!!!!! It was

supposed to be a PPT also but we ran out of time. We never got to important

issues and recommendations -like we told them we feared we wouldn't. Some

educators had to leave because of baby sitters. The only thing is my mother

attended and asked a question they did not like.

A few days later my mother, who works at the high school got called in

and was grilled for talking about the PPT at school, she really didn't and

this was her first time, no one explained the laws to her. They told her we

had too big of a family, they only had to deal with and I and that she

couldn't be Patty's advocate. Then another letter to them and the

superintendent.

Next I got someone to do a CHARGE inservice. Was wonderful!!!! But low

and behold, more letters. They are now getting quite legal. I have 37

letters since Sept., 9 being ours. Then there have been all the phone

calls.... There has only been 90 days of school. Next was a PPT scheduled

in Dec. but Patty went to a new doctor who has had over 40 children with

CHARGE. He told us to cancel it because he was supposed to come to our next

meeting, this weekend he called to cancel due to scheduling. We are past the

IEP and I had to sign for an extension. She transitioned into the high

school without proper modifications. The regular ed teachers have been

wonderful. As have been all the specialists who have come into the school

district to try to educate our " specialists " about Patty's disabilities and

their impact on her education. One of the biggest things is their continuing

lack of understanding- even with all we have tried to do. They continue to

talk about " proper placement " as they have since she was 2 1/2. You would

think by now they would figure out things. The testing comes out that she is

quite borderline. But that is due to her sensory deficits and possibly a

learning disability, which they never tested before. They want to cut

speech, put her in inappropriate classes, fight us on technology....There is

sooooo much more to this story, I couldn't begin to go over it all.

Until last year I used to work there but they moved me because Patty

would be there. In the beginning we were only asking for two things they

already had at the high school. Now, through all our research and information

throughout this process we are aware of many things she needs but hasn't had

concerning her education. Having the CHARGE diagnosis has opened up so much

for us. We used to be totally alone, but now there is so much information to

share. I just don't understand why they don't listen. This is not going to

be a friendly meeting, though the principal is now involved because he wants

to end all this.

The funny thing is my mother, brother and his wife, sister, the 4 of us

and a neighbor will be attending. They will see the family involvement. The

school has 20 people on their roster. This should even it out.

What an ordeal though. This has been absolutely horrible. I can

honestly say that this is the last one. They have to _ _ _ _ or get off the

pot.

Wish us luck.

By the way, has anyone used a tape recorder? Their interpretation of what

is said in the minutes is almost always different from ours.

Bonnie

[Guest guest]

Bonnie,

We most certainly wish you luck!! It is incomprehensible why some schools can

make things so much more complicated than they need to be. The Federal Laws

are clear: IDEA. But somehow the schools find ways to get around them.

I use a tape recorder. Be sure to have extra batteries and tapes.

Keep us posted.

Mom to Kendra, 13 CHARGE, ALexander, 19 and Camille 21

Portland, OR

TURK22082@... wrote:

>

> From: TURK22082@...

>

> Today is the big day. We are going to have yet another PPT meeting for Patty

> and I don't know what to expect. With Patty's diagnosis of CHARGE she got

> tested at Perkins school last April-complete, speech, OT PT hearing, visual,

> Psych... We and the school got a verbal report in May. June we had the PPT,

> we teleconferenced with those at Perkins. When they gave their reports we

> hung up the phone only to be told we could go no further until all had read

> the reports, which were quite lengthy. Remember, they hacd the verbal summary

> over a month before that. a

[Guest guest]

Bonnie,

IDEA states that you have the right to use a tape recorder, like

said make sure you have plenty of batteries and tapes,

you have to notify them that you are using a tape recorder in

advance, 24 hrs in CA but I think that's IDEA also, I can look it up

of you want. The problem with minutes of a meeting it

is always someone elses interpretation.

As far as the letters go, I have a feeling they are just trying to

bombard you with BS hoping that you'll get tired and give in.. they

sure don't know you do they ? I hope you are keeping all the letters

and copies of your replies.. As for phone calls tell them you want

anything in writing as if this goes to mediation or Due Process they

will of course say they said something different and so did you.

They can't hide from a paper trail of their own doing. <G>

You may also want to advise them that according to Federal law

they should have a Transition Plan in effect. This should have been

done at age 14 and is totally different from an IEP.

Go get em !!!

Casey

Mom to Dawn 21 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220