Re: the public speaker that I am, I did be glad to do so

February 28, 2003

you are an inspiration!

cathie

February 28, 2003

paul, thanks for writing. you give us hope that our chargers can have a

successful, great life! Good work!! We are ALL proud of you!! from the

Mousouris'

the public speaker that I am, I did be glad to do so

> My name is khouri, and Im half Jordanian and half German.

> I ve lived in over twently countries in my entire life so far and I

> still plan to continue my travels later. I spent most of my High

> school years in Jordan, then I moved back to the states in 2000 to

> attend University. As a child with Charge, ( I ve all of them ) my

> family, which consisted of me and my five sisters. Bein number four

> four in the lot as their only brother.

> When doctors told my parents that I would never walk or talk,

> my mother took me home anyway commenting on how ridiculous the doctor

> was n she was right. Today I speak four languages Frech, arabic,

> English and American Sign Language. Im an avid basketball player n

> love kayaking. As for my career goal Im graduating in May of 2004

> then Im doing grad school at the American University. Hopefully after

> that I might start or join an organization that improves social

> standards for children with disabilities in developing countries.

> As for finding out about this group, I got curious about wether

> they were others like me who had Charge n I guess I found some like

> Chip, who I feel is like a smaller brother to me.

> Any questions, feel free to email me

>

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

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

February 28, 2003

Thanks so much for introducing yourself! I think I can speak for many of the

other parents on the list and say that the comments of the adults with Charge

are invaluable to us. Whether the discussion is about a joy, a success, or a

difficulty, it is helpful to us to have a glimpse into our kids' futures. We

know that their life experience is likely to be different from ours in many

ways. We often feel inadequate to support them through experiences that we

haven't lived through ourselves. Talking with you folks gives us fuel for

thought and arms us with what we need to fight those feelings of inadequacy.

Sometimes it's just a matter of realizing that your situations aren't really all

that different from ours at the same life stage. Sometimes it's seeing how

competent you are in handling those situations that we can't imagine. You know

how parents are -- sometimes we have a hard time remembering that our kids can

do some things for themselves -- we think they'll need us forever -- not!

[As I reread this before posting, I realize that I've gotten onto a roll here.

Prepare yourself :-) -- , you'll soon find that I'm one of those longwinded

members of the group.)

I'll never forget on of those " aha " moments. I was at an inclusive special

education conference talking with a vendor. He sold great t-shirts with

disability-related slogans etc. He was in a wheelchair as a result of an auto

accident as a young adult. He was a wonderful man, and we struck up a deep

conversation. I can't remember all of it, but I do recall the point when I

became teary-eyed at the realization that I was a member of the " disabled club "

along with Aubrie. I had been feeling a strange separateness from her. My own

child was a part of the " Deaf world " and the " disabled " . She had a strong

connection with a whole world of people with whom I didn't belong. In a room of

Chargers, she resembles the other Chargers more than she resembles her own

family! Anyway, through the conversation, for the first time I realized that a

whole disability rights culture, or movement, or whatever, existed and that

Aubrie was a part of that. And I was feeling alone and afraid that I wouldn't

be able to share that with her. Then this man pointed out that I was a part of

the 'club' too just by virtue of being her mom. It was so comforting to know

that I could share that with her and that there was a whole body of people who

could also share and support us through experience.

Having you guys as a part of the group adds a vital element that is

indescribable.

Michele W

Aubrie's mom

the public speaker that I am, I did be glad to do so

My name is khouri, and Im half Jordanian and half German.

I ve lived in over twently countries in my entire life so far and I

still plan to continue my travels later. I spent most of my High

school years in Jordan, then I moved back to the states in 2000 to

attend University. As a child with Charge, ( I ve all of them ) my

family, which consisted of me and my five sisters. Bein number four

four in the lot as their only brother.

When doctors told my parents that I would never walk or talk,

my mother took me home anyway commenting on how ridiculous the doctor

was n she was right. Today I speak four languages Frech, arabic,

English and American Sign Language. Im an avid basketball player n

love kayaking. As for my career goal Im graduating in May of 2004

then Im doing grad school at the American University. Hopefully after

that I might start or join an organization that improves social

standards for children with disabilities in developing countries.

As for finding out about this group, I got curious about wether

they were others like me who had Charge n I guess I found some like

Chip, who I feel is like a smaller brother to me.

Any questions, feel free to email me

February 28, 2003

Hi ,

We're happy to meet you :-)

What an interesting life experience you have had!

Can you comment on things that have slowed you down (for example balance,

" CHARGE behaviour " , any other

issues)? How is your sight?

What are your strengths (one obvious strength is that you express yourself very

well!) and what has helped

to propel you forward? Your family sounds very supportive too.

Have you enjoyed Gallaudet? Are you living in residence or off-campus?

I am the mother of a very bright 6 1/2 year old who is fully integrated in a

local elementary school (first

grade) which offers a 100% early French immersion program. For the most part, my

daughter is doing well

academically and socially. She has joined a chess club and participates in

several other extracurricular

activities. My daughter is legally blind, has a moderately severe to profound

bilateral mixed hearing loss

and some significant gross motor difficulties. She also has a wonderful sense of

humour. I can't say what

her future will be (her kindergarten teacher observed that Penina should become

a journalist because of her

curiosity), but we are now able to enjoy the present.

It seems that each person with CHARGE has a unique combination or sub-set of

issues. It is very encouraging

to hear about your achievements. Thank you for sharing.

Do you plan to attend the conference in Cleveland this summer?

Anne, mom of Penina (CHARGE, 6 1/2)

February 28, 2003

WOW !!!! I on;y hope Timmy can be as well spoken as you seem to be and out

going. I hope you plan to attend the conference this summer it would be

wonderful to meet you.

the halloran's