Re: no more pukes!

September 22, 1998

Michele wrote:

>Oh, while I'm rambling on subjects that only you guys would

>understand... Talking with our deaf therapist last week, I realized how

>much I've been still denying the extent of Aubrie's disabilities. The

>School for the Deaf has play groups 2ce a month. We hadn't been going

>because they were on the same day as our therapy appts and Aubrie was

>too young to benefit. But now our schedule has changed and she's

>getting old enough to enjoy socializing. What's been holding me back

>now is the thought that she's not " really " hearing impaired (she's got

>one good ear, ya know) and why would I want to be with all those " deaf "

>kids and deal with signing, blah, blah. Then I realized that I will be

>signing soon enough (even if it's just temporary) and that those kids

>and their families have as much or more in common with me than my

>typical friends. I have to get over it and enter Aubrie's world. When

>she is older, she will probably benefit greatly by being with other

>children who have various disabilities. How narrow I would be if I

>expected her to function only in my world. How can I be comfortable

>with her but not with others like her? I guess I'm growing, huh? BTW,

>I hope I have not offended anyone with my honesty. I assume that I am

>not the only one who has felt this way in the beginning.

Michele, you, as have all of us, been dealing with so much since Aubrie was

born with CHARGE. It seems that as soon as one issue resolves or improves,

another one pops into it's place. You are doing so well in being a great

Mom to Aubrie and don't for a second be hard on yourself that you might be

in denial a bit. Denial can be a healthy way to deal with something for a

while. You don't really know the extent of Aubrie's hearing loss on the

way she will actually communicate so it is not unreasonable to think she

might not utilize sign as a main mode of communication in the future. Some

people with hearing loss in one ear function quite readily in an oral

environment while others may not. There are many variables.

I would say that deafness was one of the most difficult issues that faced

me. For some reason it was the aspect that made me cry the most. Now I am

amazed I ever felt that way because I value so much the language and

culture and the deaf individuals I have met. To me, deafness no longer

seems like a disability at all but rather it necessitates a different mode

of communication with my daughter. When I was growing up I dreamed of

being an interpreter and working at the UN. I grew up and majored in

French but never did follow that early dream. However, one day long after

Kendra had been identified as being deaf, I remembered that long ago dream

and realized that while I'm not a professional sign language interpreter, I

interpret everyday for Kendra in one situation or another. I love sign

language. I am living part of a dream I dreamt decades ago. To be using

two languages daily, English and American Sign Language, gives me a lot of

joy. To see Kendra communicating in sign pleases me no end.

Many children who grow up in bi-lingual families are lucky to have access

to more than one language. They are enhanced by knowing two languages. I

think it is the same with children who are deaf and use American Sign

Language to communicate. When it is time to learn to read, the child will

learn to read printed English and will be bi-lingual. I see this as a

gift.

What I'm trying to say is that everything has a time and a place. Don't

rush yourself into everything at once. It may take time to adjust to the

hearing loss issue and certainly it is hard to adjust when you're uncertain

of what the full impact may be. Be good to yourself and know how well you

are doing and what a great Mom you are. You are amazing in the way you can

articulate these concerns of yours.

In retrospect I didn't learn sign as early as I should have, and if I had

to do it again, I would jump in there because learning sign early will

probably only enhance language learning. Kendra's hearing loss is greater

than Aubrie's. Kendra very rarely responds to sound. Try to remember that

learning sign won't prevent Aubrie from talking if she is inclined in that

direction and *early and clear language exposure is a tremendously

important condition that helps all cognitive functions*. Try to remember

that using sign or learning sign does not necessarily mean Aubrie will use

that mode exclusively. Talk and sign both and that way you will ensure she

is getting information from you. Watch her clues to you and you will know

if she is understanding what you are saying. She is very young and you

have lots of wonderful times together to learn how to communicate most

effectively.

And....to communicate is the key. Whether it be by voice or signs or

picture communication or gestures, the true key is to share wonderful

communication with your beautiful daughter.

keedy@...

September 22, 1998

,

Nope you're not the only one.. I went through it too.. I

actually looking back at it now, even put off the obvious

signs of 's hearing loss until he was about 2. he

wasn't even tested til he was 2.5yo. At least you live in

an area where there are HI kids. up here there are only

two in the entire school district, and the other one is in

high school. the nearest activities for HI kids from here is

down by Kim, about 50 miles from me, there is NOTHING

in this county.

oh oh.. now I'm starting to feel sorry for myself <G>

Casey

charge@...

minnow@...

Mom to Dawn 19, Ken 8 ADHD, and 6 CHARGE.

Cobb California

ICQ UIN# 728514

ICQ Pager http://wwp.mirabilis.com/728514

September 22, 1998

Michele:

Oran used to vomit up a storm everytime he had an ear infection. In fact,

the vomiting would start a day or two before the infection showed up. Glad

to hear the Aubrie is doing so well.

I understand completely your feelings about putting Aubrie in the deaf play

group. I think that Tim and I are still in denial with Oran. I know that

he is developmentally delayed, but I also know how smart he is. It seems to

me that a lot of the kids on the list here and others we hear about do

really well later...am I wrong? I keep believing that Oran is going to get

there in the end. We can't give up on him, we have to keep believing in him

and his capabilities. Am I crazy to think like this?

Trish, mom to Oran (ChaRge), wife to Tim

Atlanta, GA

At 10:26 PM 9/20/98 -0500, you wrote:

>

>Guess what? Aubrie truly is not vomiting now that she had the tubes put

>in her ears! I thought it was too good to be true, but it's been almost

>a week now and I've even increased her feeding amount. Watch, now that

>I've had the gall to put it in writing she'll be puking up a storm!

>Let's hope not! Anyway, it makes sense to me that all that fluid in her

>inner ear (which I have a feeling was infected more often than not)

>would have contributed to her upset stomach. Kind of a permanent

>motion-sickness. Do any kids with vestibular problems have nausea? I'm

>guessing that there have been many factors contributing to her reflux

>from the start. We've found the right formula and med to help and maybe

>the ears were just the last piece of the puzzle for us to find. I don't

>know, but I'm knocking on wood and crossing my fingers that this is for

>real. We see the GI dr on Wed, so I'll see what she has to say.

>

>Thanks for listening to my rambling. You know there aren't many friends

>around who understand all these things we have to think about with our

>kids.