Re: What an inservice!

[Guest guest]

This is good news to us! We live in southern NH and recieve letters from

Perkins School For the Blind often. Amy just turned 3 today! She starts

Pre-School tomorow. At our Final meeting with the school I talked to her

visual therapist and she agreed to have a little inservice with all the

teachers and Aids using those different types of goggles. I was to say the

least thrilled. I've had the chance in the past, and feel it will give

everyone the chance to see thing from a different point of veiw..Amys. We

also convinced the school special ed coordinator that Amy needs her own Aid

who will be in class with her when she goes. They had decided at the first

meeting they didn't feel she needed one. They just weren't getting the whole

vision/comunication thing. Frustrated I kept my moulth shut and went home to

talk with her vision therapist who wasn't invited to this meeting. She and

the new vision therapist came to the final metting and did a wonderfull job

of explaining Amy to them. After hearing what they had to say everyone in

the room agreed with us! Its great to know there is such a good contact

close by at Perkins. This is only pre-school,so far so good, but we have

many years of school to go! Kerrie mom to Amy 3 ChARgE , 5 and

8 months

What an inservice!

>From: TURK22082@...

>

>Everyone,

>

>I just need tell you what went on today!!!! I'll try to make it as short

as

>possible. Things with Patty's school have been terrible. Even my mother

who

>works in the school system has been dragged into this horrible situation.

>There has been some good though. First was a Maps done by (I don't know if

I

>can give their names) someone from New England Center for Deaf-Blind

>Services. She was Fantastic!!! Then now we have someone from Board of Ed

>Services for the Blind working for Patty who knows about CHARGE. These two

>women were great at the last meeting. But.....those in the school system

>remained jerks. We are now in a battle of words, writing letters back and

>forth. It's a long story. By the way, remember Patty wasn't diagnosed till

>a year or so ago. We never had deaf/blind services, etc.

> Anyway, today we had an inservice about CHARGE!!!!!!!!

>The school staff that works with Patty was there-but only two regular ed

>teachers-she has 7. You know who did it? Sister Bernadette from Helen

Keller

>National Center! She was incredible. I learned even more added to all the

>stuff we learned in Houston. She played a tape to show how Patty hears,

gave

>us goggles to show how she sees. Maybe this time these people will get it.

>There was sooooooo much information she gave that was beneficial to Patty's

>education and life. And she is soooooo diplomatic. What great skills she

>has. She even gave information to me that could have been painful but

wasn't

>because of the approach she used. Patty is now 15 and we are looking to

the

>near future. I can't tell you all how much this meant to us.

> AND, my Mother, Sister, and Brother were also there. I think that was

>sooooo cool because even as much as they all absolutely love Patty, I think

>now they understand her more. Sometimes I think people hear more if it

>doesn't come from the mother or father but a Professional. My family is

>absolutely wonderful, just needed to remember that Patty really does have

>disabilities and not just being Patty. When you put a name to it-CHARGE-

you

>can understand.

> I think Sister Bernadette would be great to have at the next CHARGE

>conference for the older children. She is an absolute angel. The kindness

>and compassion she has is outstanding, as well as her knowledge on

deaf/blind

>and CHARGE Syndrome. She really " gets it! " I am so grateful. I learned

>even more about my child. What more can you ask?

> We are going to have yet another PPT on Monday. I don't know if this

has

>helped those in the school who work with Patty, but I can only hope so. I

>don't know what will happen next. But it's nice to know there are some

>people out there who know about your child's disability and who still think

>you're a good Mom. Not the horrible monster many say I am.

> If any of you out there, probably for the older children, live near by

I

>really do suggest you get in touch with Perkins School for the deaf/blind

in

>Massachusetts and Helen Keller National Center, Sister Bernadette. I know

I

>already said it but these people are truly angels. I only wish I knew

about

>them before.

>

>Bonnie, Mom to Kris 17, Patty CHARGE 15, and wife to

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

[Guest guest]

Kerry-

" They just weren't getting the whole vision/comunication thing. Frustrated

I kept my moulth shut and went home to talk with her vision therapist who

wasn't invited to this meeting. She and the new vision therapist came to

the final metting and did a wonderfull job of explaining Amy to them. "

Kerry, you make a very good point here. Professionals " listen " to their

peers more than they " listen " to parents. So, the more allies you have

with you the better. It is very important for us to remember we can invite

ANYONE to the IEP who will represent our children well. The law says

" parents or the school may invite other individuals who have expertise

about the child. (the inviting party makes the determination). " It is not

unusual for us to have 20 people around the table at ANY of 's school

meetings. For example, we have his counselor from our State Services for

the Blind, Vision teacher, Orientation and Mobility teacher, Deaf/Hard of

Hearing teacher, school transition specialist, DeafBlind specialist,

Interpreter/Intervener, IEP Case manager, (a student 14 or older MUST

be invited), school representative, and my hustand Mike and I. When

was younger, there were many more people. So, great job inviting your

vision person to the table.

Many times soooo many people are working with our kids that the only time

they meet one another is at these meetings. For that reason, I suggest

parents(I work at the MN DeafBlind Project) request additional indirect

time for each specialist to get together and have at least monthly team

meetings (depending how involved the kids are), but hopefully more often.

Too many times specialists come in and work with our kids looking at only

their expertise area, ie. vision, speech, D/HH, P.T. etc.and not looking at

the " whole " child. Hopefully your district will listen to your request and

let that additional time be added to the IEP.

For those of you who have a chid who is Deaf or Hard of Hearing, there is

great new language in IDEA since it was reauthorized in 1997. The Law now

contains language that specifically states: " The IEP shall consider the

communication needs of the child, and in the case of a child who is deaf or

hard of hearing, consider the child's language and communication needs,

opportunities for direct communication with peers and professional

personnel in the child's language and communication mode, academic level,

and full range of needs, including opportunities for direct instruction in

the child's language and communication mode..... " This is great for our

kids who are deaf or hard of hearing....making it a little easier to

request a 1:1 person(Intervener, Interpreter, Paraprofessional, Classroom

Aide, whatever you want to call that person) for your child. In our case,

is in a program for students who are Deaf, but his vision limits his

ability to receive visual information, so for that reason, he has a 1:1.

PACER(Parent Advocacy Coalition for Educational Rights) is a great resource

for parents to help understand the educational maze we must go through with

our kids. Check out their websites at: www.pacer.org or

www.taaliance.org or www.fape.org Request a booklet called " Parents

Can Be the Key....to an appropriate education for their child with

disabilities " It is in draft form and it states " DRAFT-DO NOT REPORODUCE " ,

but hopefully they will send one out, it is very helpful. They are very

parent friendly, in fact I know a mom of 2 CHARGE kids who works there.

Sally