deafblind communication and emotions

November 21, 2000

,

I think almost all of us have been at the point you are at for one reason

or another. And more than just once. It is hard, and yes you will be able

to cope better as time passes but that is easy to say. I think keeping open

with your husband is important, let him know how you feel without taking it

out on him. Also try to understand that he may deal with things differently

than you, and that is all right. Keep communication going but try to talk

about other things too.

I also remember that when would come home from work I did not care

if he helped me clean, do laundry... The best thing he could do was to play

with our daughters while I took a bath, read a poem...

About your daughter, I bet she is beautiful isn't she. When you look at

her what do you enjoy the most? I remember Patty was soft. I mean more than

baby soft. She was like silk. And she smelled so sweet. Take one goal at a

time. It might be holding your finger, lifting her head, ... and when she

does it, you can rejoice.

The last most important thing we did was to get some help. We were

taught how to relax. I really mean that. We were taught relaxation

techniques. Sometimes in the beginning I would be afraid and could feel my

heart in fear. I got help and it worked wonders. It still does. I taught

the girls too. My oldest has had a couple of stitches a couple of times

without novocain.

You know, just remember you are not alone. You can love your daughter

and also have the feelings you do. That is natural and normal. We are all

here for you.

Bonnie

November 21, 2000

,

There are some resources in TN that may be able to help you.

1 STATE DEAF-BLIND PROJECT

Project TREDS - Tennessee Technical Assistance and Resources for

Enhancing Deaf-Blind

Supports [Project TREDS]

Peabody College of Vanderbilt

Box 328

Nashville, TN 37203

Craig Kennedy, Ph.D. Project Director

Sandy Self Project Coordinator

TTY:

FAX:

EMAIL:sandy.self@...

caren.wayburn@...

WEBSITE:http://www.vanderbilt.edu/kennedy/treds

2 FAMILY SUPPORT ORGANIZATIONS

National Family Association for Deaf-Blind [NFADB Region 4B]

2700 Lylewood Road

Woodlawn, TN 37191

Henrietta (Henri) Regional Director

FAX:

EMAIL:uxzh83a@...

WEBSITE:http://www.nfadb.org

4 SERVICE and REHABILITATION PROGRAMS

Helen Keller National Center Southeastern Regional Office [HKNC

Southeastern Regional

Office]

1005 Virginia Avenue, Suite 104

Atlanta, GA 30354

Monika McJannet Werner Regional Representative for KY, NC, SC, TN

TTY:

FAX:

EMAIL:SLHKNC4@... ( Lascek)

MW4HKNC@... (Monika M. Werner)

WEBSITE:http://www.helenkeller.org/national

Also, contact DB-LINK at or visit our web site

http://www.tr.wou.edu/dblink/

You might want to look at the Early Interactions paper at

http://www.tr.wou.edu/dblink/early.htm

Good luck and please call if we can assist you.

Sincerely,

Betsy L. McGinnity

Information Specialist

Perkins DB-LINK

mcginnityb@...

November 21, 2000

Dear Tracey,

I felt so sad reading your letter, but I can only say what I am sure

others on this list will say - that things will get better. is

now 5 and still has many problems, she is profoundly deaf and has

very poor sight in one eye and limited sight in the other. She goes

to a school for deaf children, but we are still waiting for an

assessment on her vision. Having said all this I can assure you that

she is a very happy little girl and a joy to be with. I don't know

how but somehow these children seem to overcome all the handicaps

thrown at them and they become an inspiration to people around them.

Although your problems may seem insurmountable now and the future may

look uncertain to you and Eileen, I can assure you that you will find

a way to communicate with your daughter and your love for her will be

the start.

Sue Grandma to .

> How does everyone communicate with their infant being deafblind?

> Does anyone use sign language but use it in their hands? I could

use

> any ideas on how to communicate with my daughter. She is only 5

> months old and I have started using signs with her. And how does

> everyone deal with the emotional overload of all of the problems.

I

> feel like I am ripping up inside. I love my baby and it is

> destroying me. Sometimes it hurts so bad my chest hurts and I

can't

> breath. I am taking it one day at a time and sometimes I cannot

even

> take one minute at a time and how do I try and tell my husband how

I

> am feeling? I see other babies looking at their moms and

responding

> to their voice and I want that. I am so depressed and I can't lose

> all the weight that I gained with her from bedrest and all the

> water. WHAT DO I DO?

>

> , Eileen 5 months CHARgE

> Knoxville, TN

November 21, 2000

--

Your post brought tears to my eyes because it brought back memories of

those times in our life. Aubrie has turned out to have good vision in

one eye and good hearing in at least one ear, so it's not nearly as bad

as it could be. But when she was Eileen's age, we didn't know what she

could see or hear. I remember singing her lullabies with my mouth right

up to her face so she could feel my breath even if she couldn't hear my

words. I'd cry as I sang cuz it was so frustrating to think she

couldn't hear me. Aubrie didn't make eye contact or smile at me for

several months. Those were the longest months. I still remember the

first time she recognized me as I entered the room and responded in

delight. It was so amazing -- until then she didn't do any of that.

Even if Eileen's vision and hearing impairments are worse than Aubrie's,

the day will come when you will feel much better than you do now. It's

hard to believe, I know. You feel like your life will never be " ok "

again and you feel so inadequate and helpless when you don't know how to

care for your own baby. But you will make connections with Eileen -you

are right now, I'm sure. They may not be done in the way you had

pictured in your mind before she was born, but you will do it. I am

certain that Eileen will amaze you -- and it will happen soon. It won't

seem like soon, but it really won't be as long as you are imagining

right now. Aubrie is just turning 3, and although she's not " normal " ,

she is delightful and wonderful and amazing and fun and competent... I

never thought I'd be this content this soon. I thought the

overwhelming, distraught feelings you are having now would last

forever. Everyone on the list told me it would get better. I didn't

know how they could be right, but they were.

I remember feeling like " there must be a light at the end of this

tunnel, but there must be several curves in the road because I can't

even see one flicker of that light. " It was frustrating and

aggravating. I was exhausted and overwhelmed. But I finally rounded

the last curve and saw some light! You will too. Until then, we're

here to hold your hand along the way. We've all been there. We've all

come out the other side -- and we're all in one piece.

I remember going to the CHARGE conference in Houston. When I walked

into the reception area and saw all those wonderful families and

competent, intelligent, successful parents, I felt so relieved. I

hadn't realized it, but I must have felt that I was flawed in some way.

When I got back up to my room, I cried as I told my mom how wonderful it

was to see those great families and know that my family could still be

whole and that I could still be worthwhile.

Hang in there, . You and Eileen and your husband will be ok. It

will just take time and patience as you learn how to navigate through

CHARGEland.

You asked how you can talk to your husband about how you're feeling.

Well, just tell him. If you really feel like you can't, then find a

friend or just tell us. I remember that my husband and I dealt with

everything very differently. The best thing I could do was to be

respectful of his feelings and his methods of handling them. We gave

each other space and support to work it out for ourselves.

I know I've gone on forever and didn't even begin to touch on the

communication issues you're facing. I think it's outstanding that

you're signing already. Keep it up. Do you have deaf ed specialists or

deafblind specialists helping you? If not, get started with your

state's early intervention system. It's not too early to begin. The

specialists in Aubrie's life were one of my biggest supports and source

of encouragement.

I'm so glad you came to us with your worries. The list was my lifeline

when I felt like you are feeling. It was so comforting to know I was

not alone. You are not alone, either. We are like family and we will

support you.

Michele

mom to Aubrie (3 next week) CHaRgE and (9 yr.), wife to DJ,in IL

west@...

November 22, 2000

Hi, just wanted to let you know that I read your post and I think it is

great that you could post how you are feeling.As far as telling your husband

how you feel, maybe you could start by letting him read your post.It was so

" powerful " .( I mean that in a good way).As for how we deal with the

emotional overload,I think you said it best " one day at a time " , but you

never have to do it ALONE we are all here for you.

Sherry in Kaufman Texas-mom to Zach 10w/charge- Candace 13

Deafblind Communication and Emotions

> How does everyone communicate with their infant being deafblind?

> Does anyone use sign language but use it in their hands? I could use

> any ideas on how to communicate with my daughter. She is only 5

> months old and I have started using signs with her. And how does

> everyone deal with the emotional overload of all of the problems. I

> feel like I am ripping up inside. I love my baby and it is

> destroying me. Sometimes it hurts so bad my chest hurts and I can't

> breath. I am taking it one day at a time and sometimes I cannot even

> take one minute at a time and how do I try and tell my husband how I

> am feeling? I see other babies looking at their moms and responding

> to their voice and I want that. I am so depressed and I can't lose

> all the weight that I gained with her from bedrest and all the

> water. WHAT DO I DO?

>

> , Eileen 5 months CHARgE

> Knoxville, TN

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

> 20-22, 2001. Information will be available first in CHARGE Accounts, the

> CHARGE Syndrome Foundation's newsletter. "

>

> 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

>

November 22, 2000

LOVE YA SHERRY