Jeanne,

Somehow I missed this post. Boy, I know the feeling. I am going to
be in the hospital in two weeks again for my fourth heart cath and
angioplasty in less than a year. You are ritht, when I went into the
hospital my husband just dropped me off even though I was having a
heart attack! He had to take Bethany home and watch her.

Well, when all this started happening in 1999 I contacted my
daughter's
social worker and she finally sent out some help. Now mind you that
Bethany is 22 years old and we have never had any home help (do get
respite outside of home). She sent out the Angel to my angel. This
young woman is wonderful with her. I could not do without this young
woman at this time in my life.

You realize I got this help because I was sick. I had been receiving
choreservice. This is money on a monthly basis from the state after
your child is 18 years old. Because you, the parent are taking care of
an adult, who would be in a state group home, if there were any!

When my daughter's aid started coming the choreservice money started
going to her. I would rather have her than the money anytime!!!! My
husband and I are finally having somekind of life. Bethany is finally
responding to someone else in life besides her parents!

Unfortunately for this to happen I had to be so sick I could no longer
take care of my daughter. Are you getting choreservice? Please look
into this. Do you have a caseworker for Jenn? Call social services.
Do you have a respite program? It sounds like you have never used
respite? Most states have some kind of respite programs. You should be
able to find this out through social services or association for
retarded
citizens or from the people at your daughter's school. Start using
these
programs if you can. You never know when you may need them, like if
your
husband or yourself become ill. It does happen, as I have found out.

Be sure and check out the program for choreservice, could be called
some-
thing else where you live (where is that, by the way?). This money
could help you pay for a babysitter to come into the house. Most
social
services programs have hours available for people to come to your
home.
There is a program here in Michigan called "Family & Neighborhood
Services".
They offer programs such as family friends. Someone you know can watch
Jenn and the program pays for it and you are allowed so many hours a
month.

Start inquiring from your daugher's principal about some of these
programs.
They should know about a lot of these agencies that can help you.
Isn't
it about time for your daughter to start the transition program
through
school since she is 18 and in most states the kids only go to school
til
age 21 (26 in Michigan)? Is there any kind of program for Jenn after
school is out? We have worked here where we live for quite a few years
to get an after exist program for the severly impaired kids. This took
a long time, and this program is now fully loaded with kids. But this
program only take 18 kids at a time. Well it isn't big enough to
incude
all the kids in the county that's for sure but we keep trying. My
daugher
is 22 and won't be out of school for 4 more years but is on the list
now!

You would think the school would provide you with a lot of this info
but
for some reason they don't until you ask for it! Start asking! Push,
Push,
Push!

Bethany does not walk and is still in diapers, too! Are you trying a
potty training program of any kind? We have been working with Bethany
a
while on this and she is really progressing (long haul though). She
goes
9 times outta 10 on the potty.

Most important is to call social services about any kind of
"choreservice"
program or reimbursement program because Jenn is 18 and you are still
taking care of her. This money can be spent to help watch Jenn even if
you have to hire someone from an outside agency yourself. These places
are listed in the telephone book. They send out aids and also nurses.
An aid is less expensive than a nurse.

Also, have you applied to SSI for Jenn since she is now 18. You should
qualify for this hands down. She is an adult now and there should be
nothing in your way to stop that from happening. Do this though social
services. When she gets SSI she will also get Medicaid. It is
automatic!

Have you thought about applying for guardianship since Jenn is now 18?
We are Bethany's guardians. We are allowed to make all decisions for
her.

Well I've probably gone on too long, but if you need any more help I
would be glad to tell ya what I know. Which isn't nearly as much
knowledge
as Jackie Golden has in her little finger (that's a compliment
Jackie)!

Penny & Bethany Exner 22 del+ (post more)
Allen Park, Michigan


MattcoInc@... wrote:
>
> I know I very seldom post, but I do read everything and I do send private
> responses. But I have a few questions for the parents of older angels. I am
> just totally overwhelmed and do not know what to do. Jenn will be 18 next
> month, she doesn't walk, she is in diapers, and is regressing it seems. We do
> have a home health aide a couple hours a day. But I am confined to my home
> when she is not at school and I am finding it all so very frustrating. I
> cannot get a baby-sitter in the evening or on weekends because no one wants
> to have to change Jenn's diaper. I asked for the hha's hours to be changed
> but it did not work out. I called the DMR worker and was basically told,
> there is nothing that they could do for us. So I mentioned, and I am sure you
> all will know this was the hardest thing, about a group home placement. It
> made me physically sick to even think about it. But I feel I have no
> alternative. The worker kind of snickered on that one and said, there are no
> group homes available and doubt there will be for years.
> Though Jenn does attend school and I can shop during the day, I cannot go out
> to dinner with my husband. We can't go to weddings and social events.
> In the mean time, we are just stuck with no where to turn. When my son needs
> to go to the hospital, only one of us can go. It is just becoming crazy!!!
> How do you all cope with this?? What else is there out there? Is there other
> programs that anyone knows about??
>
> Jeanne