Bonnie & Patty

November 17, 2004

Hi Bonnie & Patty!

I don't post often, but I live in lin, MA. I wanted to congratulation you

- Patty - on getting into Mass Bay! That is so awesome! My friend's daughter

is a sophmore there. I really look forward to meeting you both one of these

days fairly soon. My children attend school in Framingham and I drive through

Ashland every day.

~

P.S. I am sure my friend's daughter would be happy to meet you and show you

around campus. If you are interested let me know.

March 1, 2005

Martha-

Thanks for sharing 's experience. It is mindboggling to try to

make these decisions. There is no clearcut right or wrong and so many

pros and cons either way. And, of course, no crystal ball to see the

future. Patty is sort of my crystal ball -- as close as I can get to

predicting the future. She and Aubrie are incredibly alike --and yet

they are so different!

Michele W

>

March 1, 2005

Michele,

You know that Dylan is way different than Aubrie in many ways, but even if

he had language I would want him at our schools for the deaf and blind.

1) His support people know deafblindness - OT, PT,O & M, deaf blind

specialist, Intervener (1:1); he has a skill center where he learns job

skills even now and gets paid to learn about money, he goes out in the

community to learn, etc...

2) The resources they have there are far beyond what any public school would

ever be able to provide for him. In public school it would all be at the

desk or in one room and I think even many more " normal " CHARGErs need more

time to process and to move their bodies before sitting down to " attend "

again.

3) He goes to TROT (hippotherapy) as part of school

4) They have adaptive PE where they understand him - I sent a picture

to post that shows him climbing a cargo rump, with a harness on like he was

rock climbing, they have all sorts of balls, adpative equipment to help him

learn to ride a trike, a scooter or whatever. I sent in info on a special

program that teaches kids with special needs (balance, autism etc...) to

ride 2 wheelers without training wheels through special bikes in a one week

camp and the PE person is already looking at getting the camp going at ASDB.

Dylan does track, the treadmill, weights, the parachute, and every other PE

thing around.

5) They already have so much of the technology available on campus, that it

is not a big deal - when he needed Intellikeys they already had it. When it

needed to be more accessible they put a computer for him in his classroom,

when his intervener did not know how to use it they provided a class, when

his teacher did not know how to use it, they provided the class, but have

pulled another teacher in to be coach. (All I had to do was mention it to

his case manager and there it was.)

6) There are vision people who understand how to do a functional vision

assessment right there on campus.

7) Everything I ever got for Tyler in public school, I had to fight for and

even then it wasn't near enough. If you get one thing, you are supposed to

be happy. I can just imagine that if I won the battle and got Dylan an

Intervener then the attitude would be I should be grateful and I should not

push to have training for her or to get adaptive equipment or whatever else

he still needed.

8) I know EVERY school is different, but Dylan's school they write IEP's

like I see IDEA meant them to be written and actually write measurable goals

with a purpose for Dylan. At Tyler's school they are written as a shield

from liability, and have nothing to do with helping Tyler learn more. I

cannot imagine getting what Dylan needs in that environment.

9) He does go to computer lab as well and has a communication specialist

helping him with his language skills.

10) Segregated schools are a big switch when the focus has been inclusion -

for me it has not been a problem. The social " oddities " with CHARGE make it

so that my goal is to work to include Dylan with his deaf or blind peers.

His combined vision and hearing loss makes him so he is not really like the

others, and so all the inclusion stuff comes into play here.

11) In our situation, our neighborhood school has a wing of 800 K-5 students

and a wing of 800 6-8 students. Dylan may go to school there, but I don't

believe he would really be included there.

12) The neighborhood school is half a mile down the road, ASDB he is on the

bus for 45 minutes, yet because we live in a big city it is just in another

part of town. We live 1/2 mile pass the line where ASDB provides a bus, so

our home district provides a medi-van to transport him. Dylan likes to ride

in the car, so the ride does not bother him.

Your situation is different than Dylan's in many ways, but in many ways it

is the same. Can the public school provide the adaptations as she gets

older to help her keep pace learning with her peer; do they understand the

impact of combined vision and hearing loss (even if it is mild on both); can

they help her learn skills needed to be an independent adult as well as

academics; can they adapt for her social differences or OCD tendencies

without just getting mad at her and insisting that she just stop it? Then

on the other hand, can ISD?

Right now you are in a small community and she has peers and gets invited to

parties and sleep-overs, has friends come over and play etc. That is huge.

I am sure she will have friends at ISD as well, but they are less likely to

be neighborhood friends. Can you find a way to keep her involved with the

community kids?

On ASL and speech

Kayla went to a charter school for 2nd and 3rd grade. 1/2 the kids were

deaf and 1/2 hearing. The instruction was in ASL. She learned by

immersion, yet she is and always be a hearing, speaking child. At Dylan's

school they have such a strong communication department, that kids with

speech issues would have far more help than they would in our public school.

Of course ISD is not ASDB and your public school is not our public school

and that does make a difference, but maybe this will help you look at things

to evaluate as you make your decision.

Kim L

>

> Martha-

> Thanks for sharing 's experience. It is mindboggling to try to

> make these decisions. There is no clearcut right or wrong and so many

> pros and cons either way. And, of course, no crystal ball to see the

> future. Patty is sort of my crystal ball -- as close as I can get to

> predicting the future. She and Aubrie are incredibly alike --and yet

> they are so different!

>

> Michele W

>

>>

>

March 3, 2005

Thanks, Bonnie. I know the girls are different and their situations are

different, but Patty is the closest thing I have to a crystal ball. So

I greatly value her and your opinions and thoughts and I look to her

experience as important input. I'm still confused. I think in part

because both options have good points. She's not totally failing at

home -- that would make it a no-brainer. I see her as sitting right on

the fence between independent adulthood and dependent adulthood. I

don't know what the thing is that will tip her over to the independent

side, but it's really important to me that I figure it out.

Michele W

>

March 3, 2005

Michele,

After reading Bonnie's post, I have just one more thought.

My philosophy for Dylan is backwards from most professionals, including

Partners in Policymaking, but here goes.

I think Dylan is a very unique individual. He is a very cognizant, capable

person, even though he does not have formal language, and even though he

does the Dylan dance and gets focused on spinning jacks in front of his

eyes. I could spend a lot of energy making sure he was included in the

public school, so he can be like the other kids. Reality for me, is that he

is not. I do not think having him be in that environment is enough to make

sure he is included. He needs language, he needs people who understand how

important it is that he has tactual as well as visual learning, he needs

practice learning how to socialize and interact, etc... So I choose to have

him in a school that can adapt to Dylan rather than in one that he must

adapt to everyone else. This is not so he can stay there for ever, but so

when he branches out in the world, he will have the skills to make those new

connections, and the skills to form reciprocal relationships.

To me the primary years are the years most important to have a school that

can lay the foundation for each child. Then when they are older they will

have the skills to fit in with whatever school they are at or group they are

with.

Not putting Tyler in a school that taught children with dyslexia was my

largest error in parenting. He did fine through first grade. In second

grade the differences began to show, by third grade it was a disaster, which

we have been trying to recover from ever since. Instead of spending 2nd and

3rd grade " waiting for him to fail " and the school insisting that he had no

difficulties, but was just lazy, I should have had him in a different

setting completely. I did do tutoring, but it was not enough. He needed a

place that understood him. I tell this story only to highlight the

increasing demands that happen as they move up the grades.

Aubrie is so awesome and has so many skills. You live in a small community.

You have not had difficulty with the school per se. She has friends. What

do you think about the Perkins report? Do you think she is missing a lot

receptively? Is there a way to tell how much she is missing at her school?

Will that be enough to make it harder to keep up as the work becomes more

language based? I agree with Bonnie. I think you are the only one who

really knows the answers to these questions.

Bonnie and I have both been burned and our children harmed by (initially)

trusting the schools to act in the best interest of our children. But there

are schools out there who really do get it right. In your case is it your

local school or is it ISD? It could be either. The ability to work

together with the team, the willingness of the team to look at all of Aubrie

and to attempt to understand the impact of her " minor " hearing loss and

" minor " vision loss and her ....., the willingness of the team to look for

what Aubrie needs to be able to access information, rather than what we can

afford to provide for her. Follow your instinct for this year on which

school you think will be most likely to meet those expectations. Maybe

during an end of school year visit, you will get a sense for which group

feels best.

Kim L

>

> Bonnie-

> I looked in the archives and didn't find anything from you. Can you

> resend?? Or rewrite if you don't have a saved copy in your file? If

> something happened in the sending, maybe it didn't get into your sent

> file. I'm very curious about your thoughts.

>

> I visited Aubrie's school today. She is doing well. I'm so confused.

> The Perkins report had her extremely extremely low on receptive language

> as well as expressive. I had expected low on expressive, but receptive

> was a surprise to me. If sign support (total communication environment)

> would give her twice the receptive input and thereby boost her receptive

> language, then ISD is the place to get it. Plus they break language

> down into the most minute components as a matter of course -- something

> that we would have to work very hard to do in the regular setting.

> Language and communication weaknesses related to hearing loss have to be

> the reasons for choosing ISD. But there are other benefits there. On

> the other hand, she is doing ok here. She's even doing well. So can we

> make a case for moving her? And should we? Perhaps it's an option that

> we need to keep open, but now may not be the time to change.

>

> I can talk myself in circles about it. Who knows if the district will

> support the idea at all. The aide was very helpful in talking me

> through it today. Her thought is that it does seem like an avenue to

> explore although Aubrie is doing well in school here. We both were

> thinking of future results rather current functioning. Which place and

> program will best turn out a competent independent adult? She agreed

> that a trial period (we're thinking the last month or so of this year)

> would make sense. Then I thought it would make sense as a next step to

> visit together (Aubrie, the aide, and I) at ISD in April when the

> hearing teacher is back in charge of the class. After that visit, we

> can better decide if it makes sense to go on with a longer trial. The

> deal is that I, the aide, and our db specialist are the only folks who

> have full info on Aubrie herself, the school setting here, and ISD's

> setting (that is, if the aide visits there). Anyone else has only

> partial info related to the situation.

>

> The principal at ISD has already said she'd ok a trial period at the end

> of this year. The teacher there is ok with the idea too. I would much

> rather do that than wait to begin anything until next year. I'd like to

> start the year feeling fairly confident that where we're starting is

> where we'll stay.

>

> Enough for now...

>

> Michele W

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

March 3, 2005

Kim-

Thanks again for all the thought you put into your replies. It helps so

much. I am feeling that it will work to discuss this honestly with the

team tomorrow and see where we go with it. I do trust that these folks

(for the most part) have her best interest at heart. If I feel that

decisions are being made for other reasons, I have no problem fighting

against it full throttle. I wish there were more people who had

experience with all parts of the decision -- Aubrie herself and both

settings. I know her better than anybody -- but I don't know the

" school " Aubrie. Kids are different at school than at home. I trust

her teacher and aide too. They know her in a way that I don't. But

they don't know CHARGE overall, Aubrie as a whole, and the other setting

either.

I will not continue to go on and on. But I do appreciate all your

support in this decision.

Michele W

>

March 3, 2005

,

Mandy has similiar issues as Aubrey,social,etc.

She has been at a hard of hearing pgm.Couldnt quite cut it they mainstreamed

some classes.As Bonnie put it as they grow the social & academic gap begins to

widen for our kids.It killed me to put her in out local deaf program.My kid

wasnt deaf! shes H.H. and can talk & sign.But what she gets now is closer

proximity in teaching, more attention.She wants to talkmore than some of the

deaf

kids.She goes and socializes with teachers and they put her in student council,

she also gets 15 min of social talk time with the councelor a day.I had to

fight for that.as small as it seems.They reconized the pgm wasnt perfect for her

so we are adapting it to her.

Out of school I look to put Mandy in pgms that are oral and socially

stimulating .Pk dist,library pgms.Horseback riding.She will never fit in with

deaf,or

typical kids or even H.H. kids because of her charge.She's Mandy..as we say at

home.Mandy is Mandy! All of you know what Im saying....

I have had to educate the deaf school on charge.ISD may already have a few??

My girlfriend is amazed at now how her daughter now has friends.I heard the

teachers are awesome there.and 2 pgms L.D. and reg.She goes to both.

Education & learning is so critical for Aubrey now.Where she can be accepted

and learn the most, is the best for her.If later she cant keep up put her in a

life skills class.Now go for all you can get her to be able to survive the

best in this world.The beauty for you is she can live at home and go to ISD ,our

kids would have to stay there.A whole topic in itself...

Again feel free to contact me I know myfriend would speak to you on the

quality of education at IDS.

I wish you the best in your decision.Its a tough one.

Diane.

March 3, 2005

Thanks Bonnie. Kim

>

> Kim,

>

> You are wonderful. Your words are profound.

>

> It was our district who couldn't figure out they didn't get it at all.

> Right now I work in a school that " gets it right. " It kind of makes me sad

> to see the wonderful job being done where I work now. I know it could have

> been done for Patty too. Money and egos got in the way.

>

> How I respect and admire absolutely everything you say.

>

> Bonnie

>

March 3, 2005

Diane-

Thanks for sharing your thoughts too. Every single bit of info helps me

so much! ISD does a good job, from what I've seen thus far, of

handling kids with other issues. They are not at all like the deaf

schools around the country who cater only to " vanilla deaf " . They were

a Godsend to us when Aubrie was a baby and I appreciate just knowing

that they are still there when we decide we need them. Which is feeling

more and more like now. We'll see how this meeting goes today. I'm

really stressed in anticipation.

I am feeling comfortable with the idea of a one-day visit with Aubrie,

her aide, and me followed by a longer trial before the end of this

school year if we decide to move forward. Even if the team doesn't

support the idea, they can't stop me from taking Aubrie for a one-day

visit. Then I can return and argue some more if I think it's

important. They know they can't win if the law is on my side and i get

on a roll about something. I just hate to rock the boat when we have a

very good relationship with the school. I am so hoping we can discuss

this without it becoming a problem. I am trying to remind myself not to

worry in advance about something that may not be a problem, but I can't

help. The anxiety is gonna get me today!

I'm so thankful for all the input from you, Bonnie, Kim, Pam, etc.

It's critically important to me in sorting out and making sense of the

whole thing.

Michele W

>

March 3, 2005

Michele,

With your advocacy skills and your relationship with the school, I bet it

will go well. There is nothing the public school has done wrong, so it is

not an attack. It is a discussion about Aubrie and how she does so well

now, all things considered, but your concern for how she will do as the

content becomes more language based when this report from Perkins shows she

is missing a lot of receptive information already. If the school does not

even have an Interpreter (let alone Aubrie does not know ASL to have an

Interpreter do any good) how will she be able to keep up? Then there is the

issue of technology, the issue of hand writing, etc....

I think your day will be fine!

Kim L

>

> Diane-

> Thanks for sharing your thoughts too. Every single bit of info helps me

> so much! ISD does a good job, from what I've seen thus far, of

> handling kids with other issues. They are not at all like the deaf

> schools around the country who cater only to " vanilla deaf " . They were

> a Godsend to us when Aubrie was a baby and I appreciate just knowing

> that they are still there when we decide we need them. Which is feeling

> more and more like now. We'll see how this meeting goes today. I'm

> really stressed in anticipation.

>

> I am feeling comfortable with the idea of a one-day visit with Aubrie,

> her aide, and me followed by a longer trial before the end of this

> school year if we decide to move forward. Even if the team doesn't

> support the idea, they can't stop me from taking Aubrie for a one-day

> visit. Then I can return and argue some more if I think it's

> important. They know they can't win if the law is on my side and i get

> on a roll about something. I just hate to rock the boat when we have a

> very good relationship with the school. I am so hoping we can discuss

> this without it becoming a problem. I am trying to remind myself not to

> worry in advance about something that may not be a problem, but I can't

> help. The anxiety is gonna get me today!

>

> I'm so thankful for all the input from you, Bonnie, Kim, Pam, etc.

> It's critically important to me in sorting out and making sense of the

> whole thing.

>

> Michele W

>

>>

>

March 3, 2005

Hey ... it looks like your gettin severely stressed... i know

you've got a ton on your plate... but do what i do when i have 13

2yrolds all freaking out because lunch is late (no fault of mine) and

i have sixteen demands being made by 9 people at one time... 30

seconds close your eyes (unless your driving) breathe in... breathe

out... repeat -- shoot if you can find a whole minute take a whole

minute -- there are 1440 minutes in a day i'd be willing to bet you

are awake for more than 960 of them... take ONE to slow your pulse :-)

Cole

On Thu, 03 Mar 2005 08:27:38 -0600, Michele Westmaas

wrote: