Re: Sara and deafblind services in GA

[Guest guest]

,

As a parent liaison for our deafblind project, the single biggest reasons

professionals do not refer parents to me are, " they have too much going on,

they have too many people coming to the house already, or they are not ready

to cope with the word deafblindness " . They put limits on our ability to

cope when it is really we who must do the coping and how can we cope if we

are shielded from information that can help our child? We are finally

making progress in AZ after a large group of people involved in early

intervention heard me speak.

Kim

Sara and deafblind services in GA

Well as it turns out she does of course qualify for all sorts of

things. There are three agencies here that do different things for

citizens with sensory impairments, the next step is evaluations.

Sara's OT was very helpful, and said she never suggested more b/c

she knew I had been so overwhelmed with medical testing & balancing

things. She said it was a good sign that Sara is babbling, and that

she's reaching for things, but we can be doing more. So we're on a

better track now- thankyou for setting us straight!! I never would

have thought that she needed more until it was too late!!

humbled again by CHARGE,

Mark

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Kim,

I agree that our single biggest obstacle medically and

developmentally has been health professionals making the judgement I

was not able to handle full explanations, or take on more

responsibilities. Most of what I know has come from the internet.

Not to say that I cope all that great... but I'm trying to work it

all out- now I have another curve ball and that makes it much harder!

Mark

> ,

>

> As a parent liaison for our deafblind project, the single biggest

reasons

> professionals do not refer parents to me are, " they have too much

going on,

> they have too many people coming to the house already, or they are

not ready

> to cope with the word deafblindness " . They put limits on our

ability to

> cope when it is really we who must do the coping and how can we

cope if we

> are shielded from information that can help our child? We are

finally

> making progress in AZ after a large group of people involved in

early

> intervention heard me speak.

>

> Kim

>

>

> Sara and deafblind services in GA

>

>

>

> Well as it turns out she does of course qualify for all sorts of

> things. There are three agencies here that do different things

for

> citizens with sensory impairments, the next step is evaluations.

> Sara's OT was very helpful, and said she never suggested more b/c

> she knew I had been so overwhelmed with medical testing &

balancing

> things. She said it was a good sign that Sara is babbling, and

that

> she's reaching for things, but we can be doing more. So we're on

a

> better track now- thankyou for setting us straight!! I never

would

> have thought that she needed more until it was too late!!

> humbled again by CHARGE,

> Mark

>

>

>

>

>

>

> 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@c... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada,

you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@c... Thank you!

>

>

[Guest guest]

-

Wonderful news!! Now that you're feeling ready, let all the people on

her team know that you are eager for info and ideas. Also let them know

that you will research, follow-up, and implement ideas as you have time

and energy. They shouldn't decide when things happen by deciding when

to give you info. They should give you all the info and then let you

set the pace. Prioritizing is difficult. Each specialist will be

seeing their " thing " only. You, however, will be seeing the whole

picture. So they need to refrain from judgement as you navigate this

thing for you, your child, and your family.

Michele W

Aubrie's mom

>