Deafblind Communication and Emotions

[Guest guest]

Dear ,

I am a mother or 3 children who are now 21, 17 and 15. is our

CHARGE lady and is 15. It is difficult to remember just how I handled

things but I think it is the same as now..one day at a time. Her

victories are precious and her difficulties are just that.

We started communicating with by letting her know what was

coming next..a spoon for eating and then pairing the sign with that. We

always signed close to 's face and did the sign several times

slowly. I think you will need guidance in all this and when we have

something to work towards it all seems to make more sense! Also, having

people around who have experience in this field is a great help!!

I wish I could give you a hug and I do, all the way from San Francisco!

I pray for peace and also encourage you to do lots of " normal "

things...movies, lunches, walks, whatever.

Also, if you and your husband can talk and perhaps talk to someone

together that would be a big help.

We on the CHARGE list remain here and are here for you,

Blessings and peace,

Jackie Kenley

Valentine wrote:

>

> 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

--

Jackie Kenley, CDBS

(inside CA only)

ext 21

hm.

[Guest guest]

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