the present and future

February 21, 2000

Mike and everyone-

and had really neat ideas for activities. I wish I had

thought of some of your more unique ideas 17 years ago when we did intense

PT with (who by the way does karate now). There is also a light

table/desk available (Little Tykes??) which is nice for kids with low

vision. A chair comes with it, but depending on the size of the child,

he/she might be able to stand as well as sit.

Update on : He is a senior in high school this year. He SO dearly

wanted to have the year 2000 on his diploma, but we have convinced him that

an additional year on his IEP at a community college or technical college

would benefit him greatly. So, he will get the cap and gown for the

graduation exercise, have a graduation party in June and do everything a

graduating senior would do except have a diploma with the year 2000 printed

on it. The school will keep his diploma until he does exit his secondary

education. We're looking at community and technical colleges for their

course offerings and support services this spring as we will have to make a

decision soon.

We are very proud of him as he has worked so incredibly hard (one thing

that stubborn and persevering CHARGE trait has put to good use:-) that he

has managed to be on the A or B honor roll through high school. He is not

an exceptionally bright kid, probably average intelligence, but he has

worked so hard that he has managed to work his way up to the #43 rank of

345 seniors at his high school. His high school has a large (relatively)

deaf program with about 40 kids who are deaf or hard of hearing. There are

about 10 teachers of the deaf/hard of hearing, a staff of 10 interpreters

and misc. support staff(teacher of blind and visually impaired, social

worker etc.) in a regular highschool. The deaf kids have the option of

mainstream classes and self contained classes. Initially, his classes were

mostly self-contained, but as he became more comfortable, he began taking

mainstream classes starting with art, then pottery, then math and sciences

and finally a senior english class where he had to do a semester long

research project. For his topic he chose closed captioning on tv and

films. It was quite an interesing project for all of us. He even went to

Caption Max, a closed captioning company in Minneapolis a couple times and

learned how the captioning process works. He went once with his DB teen

group and another time I got to go and interpret. It was fun for us and

fun for the captioning staff to meet some of their consumers.

is still working at the bakery. He began last October and works

about 10 hours a week after school on Mondays and Saturdays. He washes at

least 100 large bakers pans and cleans up the kitchen for them. This job

experience has been wonderful for his self esteem as well as his bank

account. He makes $7/ hour and gets all the chocolate chip cookies he

wants (his favorite). He would like a promotion as washing pans has lost

it's appeal, but we keep reminding him he has to begin somewhere, and stick

with it for a period of time. He would like to wait on customers in the

front of the bakery, but that would be difficult when it's busy.

Communicating on paper would become very cumbersome after the first

" chocolate donut with multicolored sprinkles on top " . We don't know where

he will end up working, but developing a stong work ethic is definately a

good start. I would strongly recommend it for all teens. (as a side not,

don't wait for your school to set it up, do it yourself or you may be

waiting a few years as we did)

The reason I give this update is for parents of younger kids who have no

conception of their child's future. We knew of no older CHARGE kids when

was young, so did not know what to expect for his future. I think

one of the biggest things to remember when your child is driving you crazy

with their stubborness is........it WILL help them in the future. I CANNOT

believe how HARD works. When I ask him to clean the kitchen, it is

SPOTLESS. When he does homework, he does it for 3 - 4 hours an evening AND

he does the extra credit work as well {didn't get that from me;)}. Once he

puts his mind to something, he does it and works very hard at it. I

remember when he was young, I was always reminding myself that his stubborn

streak would eventually get him what he needed. It's turning out that way,

so take a deep breath when you see that trait exposing itself in your kids

and remind yourselves he/she'll need it in the future. Hang in there, it

is worth it! It has been one incredible and eye-opening journey!

You all are great advocates for your kids or you would not have searched

out this site. Keep up the great work!

Sally (wife to Mike, mom to Bill 20, 18,CHARGE, and Liz 12 and

assorted pets)

February 22, 2000

Sally-

Thanks so much for the update on ! I, for one, would appreciate

them periodically. It is so hard to get thru day-by-day when I have no

idea of what to dream for Aubrie. It drives me nuts when my friends say

that no one knows what the future will bring, blah, blah, blah... Well,

they can be reasonably sure there will be a wonderful late night

conversation somewhere down the road... I'm not sure if Aubrie will ever

talk... they can be reasonably sure there will be a prom, a first date,

a first bike, a car, a job, an idependent adult life... Maybe their

child won't choose to go to prom or to get married or whatever, but the

option is there. I don't even know what my daughter's options will be.

It's so discouraging and disheartening. I want to dream everything for

her, but I don't want to set her (or myself) up for disappointment.

Hearing about and the other older CHARGErs really helps.

Michele W

mom to Aubrie (26 mos) CHaRgE and (8 yrs), wife to DJ, in IL

west@...

February 23, 2000

Dear Michele,

When my now 14 year old was born, we were told she would not live to make 3.

When she did, we were told she would be blind deaf and severely mentally

retarded. This was despite the fact that she was already signing and

producing some quite sophisticated language. We were told to put her away

into a childrens' home as there was no point in trying to maintain such a

severely disabled child.

Well 14 years later, Ellen is a vibrant, delightful human being who does not

just well, but brilliantly at school. She is at the top of several of the

subjects she is integrated in and her teachers say that she is more than

capable intellectually of university. She is still deaf/blind, but not as

deaf blind as was thought initially. She talks the leg off an iron pot,

loves to read and has a small but loyal group of friends. She says she will

live with my husband and I forever and she probably will.

There are downsides that nobody ever predicted either. Everyone thought she

would walk eventually, but this doesn't seem likely. Everyone thought she

would eventually manage to eat orally. This hasn't been the case and in fact

her nutrition problems will probably kill her before her time. BUT the

point is that she has achieved so much more than anyone ever thought she

would that I've given up wondering what she will and won't achieve in

admiration of the person she is. Don't let your friends' aspirations dent

yours for Aubrie...only you and she will know what she's capable of. Don't

be frightened of dreaming for her.. you may not get the prom, but you will

undoubtedly get other things, just as good.

Cheers,

Marea Howe

re: the present and future

>

>Sally-

>Thanks so much for the update on ! I, for one, would appreciate

>them periodically. It is so hard to get thru day-by-day when I have no

>idea of what to dream for Aubrie. It drives me nuts when my friends say

>that no one knows what the future will bring, blah, blah, blah... Well,

>they can be reasonably sure there will be a wonderful late night

>conversation somewhere down the road... I'm not sure if Aubrie will ever

>talk... they can be reasonably sure there will be a prom, a first date,

>a first bike, a car, a job, an idependent adult life... Maybe their

>child won't choose to go to prom or to get married or whatever, but the

>option is there. I don't even know what my daughter's options will be.

>It's so discouraging and disheartening. I want to dream everything for

>her, but I don't want to set her (or myself) up for disappointment.

>Hearing about and the other older CHARGErs really helps.

>

>Michele W

>mom to Aubrie (26 mos) CHaRgE and (8 yrs), wife to DJ, in IL

>west@...

>

>------------------------------------------------------------------------

>Looking for the best new sites on the Web? eTour.com is a FREE

>service that brings great websites right to you - matched to your

>own unique interests. It's like having a personal remote control

>for the Internet!

>http://click./1/1675/2/_/22564/_/951178517/

>------------------------------------------------------------------------

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

please contact marion@....

>

February 23, 2000

Marea, you are and aklways will be a source of inspiration with your

positive attitude while coping with so much,

Our 17 year old is like yours doing so many things they said she wouldnt,

like roller skating without the inner ear balance function,loves horse

riding and changing clothes,still wont (cant eat meat with her chewing

problem).but has stareted some work experience at school ,and this will

expand into a work place environment,

All for a girl who was told at ten days old she was going to die,and then

like you put her in an institution for our benifit,nothing works like love

and patience from the home front,

Life wasnt ment to be easy but who said it had to be this hard,

I am so glad to you girl doing well,how is the teenage stuff with her,we are

on HRT because of delayed or no puberty,

Regards Marie

austcharge@...

>

>Reply-To: CHARGEonelist

>To: <CHARGEonelist>

>Subject: Re: re: the present and future

>Date: Wed, 23 Feb 2000 13:29:47 +1100

>

>Dear Michele,

>When my now 14 year old was born, we were told she would not live to make

>3.

>When she did, we were told she would be blind deaf and severely mentally

>retarded. This was despite the fact that she was already signing and

>producing some quite sophisticated language. We were told to put her away

>into a childrens' home as there was no point in trying to maintain such a

>severely disabled child.

>Well 14 years later, Ellen is a vibrant, delightful human being who does

>not

>just well, but brilliantly at school. She is at the top of several of the

>subjects she is integrated in and her teachers say that she is more than

>capable intellectually of university. She is still deaf/blind, but not as

>deaf blind as was thought initially. She talks the leg off an iron pot,

>loves to read and has a small but loyal group of friends. She says she will

>live with my husband and I forever and she probably will.

>There are downsides that nobody ever predicted either. Everyone thought she

>would walk eventually, but this doesn't seem likely. Everyone thought she

>would eventually manage to eat orally. This hasn't been the case and in

>fact

>her nutrition problems will probably kill her before her time. BUT the

>point is that she has achieved so much more than anyone ever thought she

>would that I've given up wondering what she will and won't achieve in

>admiration of the person she is. Don't let your friends' aspirations dent

>yours for Aubrie...only you and she will know what she's capable of. Don't

>be frightened of dreaming for her.. you may not get the prom, but you will

>undoubtedly get other things, just as good.

>Cheers,

>Marea Howe

> re: the present and future

>

> >

> >Sally-

> >Thanks so much for the update on ! I, for one, would appreciate

> >them periodically. It is so hard to get thru day-by-day when I have no

> >idea of what to dream for Aubrie. It drives me nuts when my friends say

> >that no one knows what the future will bring, blah, blah, blah... Well,

> >they can be reasonably sure there will be a wonderful late night

> >conversation somewhere down the road... I'm not sure if Aubrie will ever

> >talk... they can be reasonably sure there will be a prom, a first date,

> >a first bike, a car, a job, an idependent adult life... Maybe their

> >child won't choose to go to prom or to get married or whatever, but the

> >option is there. I don't even know what my daughter's options will be.

> >It's so discouraging and disheartening. I want to dream everything for

> >her, but I don't want to set her (or myself) up for disappointment.

> >Hearing about and the other older CHARGErs really helps.

> >

> >Michele W

> >mom to Aubrie (26 mos) CHaRgE and (8 yrs), wife to DJ, in IL

> >west@...

> >

> >------------------------------------------------------------------------

> >Looking for the best new sites on the Web? eTour.com is a FREE

> >service that brings great websites right to you - matched to your

> >own unique interests. It's like having a personal remote control

> >for the Internet!

> >http://click./1/1675/2/_/22564/_/951178517/

> >------------------------------------------------------------------------

> >

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

>member

>please contact marion@....

> >

>

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February 23, 2000