Re: apperently im not dissabled enough.

[Guest guest]

Kim,

Hi there Kim. Voight here Mark's Mom from Michigan also.

Where about are you guys again? Just curious because I would like to stay in

contact with some regional families.

[Guest guest]

Kim,

I am in Flushing which is just north of Flint. Mark is 22 now and I

have MANY concerns about his future.

[Guest guest]

Kim,

We have went down the road of multiple school placements also you

might recall. Mark is in a TMI program now and they are going to be moving to a

new site for the transition group. Mark can do tasks when shown and prompted

but he will always need supervision. I have not been impressed with a lot of

the agencies in the past. If you hear of ANYTHING you think I would be

interested in checking out for after school years please pass it on, I saved

your

other e mail addy too.

[Guest guest]

Chantelle-

Girl, I don't know what to say. I don't have any answers. I just know that

you are not the only one and that we have to do something to get support for

you and others who are " doing too well " and are " not disabled enough " . It's

ridiculous. Hang in there. I hope others will have more encouragement

beyond just sharing in your frustration since that's all I seem to be able

to offer right now.

I just learned about an advocacy group called People First. Have you heard

of them? They are in Canada. If there's a group close to you, it might

help to be a part of something bigger so you don't feel so alone and so you

feel that you are doing and can do something to begin to change the system.

Thinking of you...

Michele W

Aubrie's mom

[Guest guest]

Micheale,

I will look up People First to see if they are in canada.

Chantelle

[Guest guest]

Chantelle

If helping hands has an appeal process please appeal. It never hurts.

Kim/Michigan

apperently im not dissabled enough.

Well in this never ending trying to get support from someplae i

am

totaly disgusted by Helping Hands. The moron who came to meet me

said

i was not dissabled enough. Told me that being deaf didnt mean

anything. I have joint problems. I have back problems and

somehow that

wasnt enough to be considered dissabled enough for their

support. Im

not dissabled enough and my place is too messy.

So now im still at square one and i dont know how much more of

this i

can take. I dont know who to turn to. I dont know who elce can

provide

the service i need.

Work is bad. Ive had a ciggeret but thrown at me. ive had a tall

fat

gyuy walk right into me and just about knocked me over and he

never

said sorry. My coworker keeps gloating at me and pointing out

every

thing i do wrong. Problem is its always the same issue at every

job.

Cleaning. I dont know what to do. I have no energy. I have no

physical

strength to walk to the garbage can. All i can do is sit at the

computer or lie in bed. Getting to the store takes all the

energy i

have. I only can do a couple things durring the day.

I dont know what to do. I was hoping helping hands would help.

Now i

dont know what to do.

Chantelle

Membership of this email support groups does not constitute

membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada information and membership, please visit

http://www.chargesyndrome.ca or email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be

available at www.chargesyndrome.org or by calling 1-.

[Guest guest]

Kim,

What I was told at his IEPC was that the transition teachers were using

their input to set it up. I believe it will have a kitchen, washers and

driers ect. Mark is not able to read or do math so that was never a big focus

for

him. He has been to a couple job sites the last few years. I am a realist

though and know that what he will be offered after school might be slim

pickens.

[Guest guest]

, are you talking to Kim/Michigan my son was diagnosed with Chiari

and we went to both Rileys childrens hospital in Indianapolis and 2nd

opinion at Shriners in Chicago. Recommendation was hands down surgery.

Well in research and talking with client that I have with Chiari one who

never had surgery (he is 18 learning disabled but college bound)says he

has headaches every now and then but nothing that is really disabling.

Just takes Tylenol more then your normal folk. I did decide not to do

the surgery on my Charger age 11. two reasons 1 being he has been

through a lot already 2nd he is able to tell me Mom I need a Tylenol. I

know your daughter is older but I felt that this could be one thing he

could decide he needed when he was older. (he also has a high pain

threshold so I am not sure it bothers him as much as it did me) It is no

little surgery is is sort of down the lines of brain surgery. This

however is not the first surgery recommendation that I have nixed so I

always asked the question Will this improve her quality of life? and

will she hate me later if I don't have this done now? How is that for

medical thinking? I am not clear what the theory is on this being

directly related to Fibromyalgia in adult females but I have heard the

two may be connected. I also believe that many surgeons truly believe

that the answer to all is to cut and I believe once you cut you will

always have some type of pain just from the insult so you need weigh the

odds of the trade off. Kim/Michigan

Re: apperently im not dissabled enough.

,

I'm cheating here. I've been trying to get to U to ask about Ur

experience

with

chiari. If U don't want to comment-I will certainly understand,

and won't

bother U

about. Just say so, then at least I'll know I reached U.

Thanks, Mom to 20 yr old Chgr.

[Guest guest]

Chantelle,

Did the " moron " know about your other problems? Did S/he know you are

deafblind and also have all the other problems you have outlined as well as

CHARGE? As someone here said, is there an appeal process? I would

certainly try for this one. What about sending out a CHARGE info sheet,

highlighting the aspects that apply to you? Anything in the CHARGE manual

that you can pull out and copy and highlight? It is ludicrous that you have

to be seen to be disabled enough to receive services when you are trying

your best to get some level of independence and get on with your life. I

sometimes think you have to forego your dignity for the sake of the

assessors who just don't get it. It is of course not right or just but

sometimes the means justify the end and this is not fair when you are

working hard to maintain your self-esteem. I know we are in for some of

this with soon (another time). Do use any advocacy service you can

to access services so you don't do these battles all by yourself. I know

they wear us all out, so don't be alone if you can avoid it.

Good luck Chantelle, it will hopefully happen for you one day.

Flo

>

> Well in this never ending trying to get support from someplae i am

> totaly disgusted by Helping Hands. The moron who came to meet me said

> i was not dissabled enough. Told me that being deaf didnt mean

> anything. I have joint problems. I have back problems and somehow that

> wasnt enough to be considered dissabled enough for their support. Im

> not dissabled enough and my place is too messy.

>

> So now im still at square one and i dont know how much more of this i

> can take. I dont know who to turn to. I dont know who elce can provide

> the service i need.

>

> Work is bad. Ive had a ciggeret but thrown at me. ive had a tall fat

> gyuy walk right into me and just about knocked me over and he never

> said sorry. My coworker keeps gloating at me and pointing out every

> thing i do wrong. Problem is its always the same issue at every job.

> Cleaning. I dont know what to do. I have no energy. I have no physical

> strength to walk to the garbage can. All i can do is sit at the

> computer or lie in bed. Getting to the store takes all the energy i

> have. I only can do a couple things durring the day.

>

> I dont know what to do. I was hoping helping hands would help. Now i

> dont know what to do.

>

> Chantelle

>

>

>

>

>

>

>

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

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

Ellen-

You've got it exactly right -- the more equipment you use, the more disabled

you appear to others. That is totally not a correct way to judge -- but

it's what happens. What is so crazy is that it's not just unaware people on

the street who make these judgements, but the service providers who are

supposed to know better.

Michele W

Aubrie's mom