Re: We're moving!

[Guest guest]

Bonnie,

You and your family are in my prayers. It sounds corny but it's true.

" Where there is a will there is a way. " We CHARGE families and all families do

what we have to do for our children. You are in my thoughts.

Lynn

Ohio

We're moving!

It is finally official, we are moving! Or I should say we are closing on our

house and is moving to our new house in Ashland, MA! I will be moving

in with my mother here in our town. When we get Patty's life straightened out

and when I get a job up there I will be finally joining him. This is so

complicated. As I am sure all of you will understand it is my insurance we

are

covered under, so I can't move until I get a job with insurance up there.

's

insurance is pitiful at best and each of us have medical necessities. Plus,

Pat is now at the National Helen Keller Center. When she completes the

training I always thought it would be easy no matter where we live to continue

HER

dreams and plans on living in CT with assistance for about a year or two with

her huge support systems including my large extended family. When she met her

goals there then she would move up to the Boston area to live on her own with

supports and with us near by. Sounds easy right? Not so.

The only assisted living programs offered in CT is covered under the

Department of Mental Retardation or if a person is Mentally ill. And for those

programs there is a five year waiting period, with the most severe being

placed first. Otherwise there is nothing. I was told the " disabled " person

usually lives with their family after they graduate. Patty would just break

if she

had to move back to this town- with my mother. Plus, there is no federal

definition of deaf/blind so fighting for her rights is difficult if our own

federal government doesn't accept that definition. Each state or area has

their own

definition. Remember now that Patty graduated she is an adult. Definitions

and services change for school aged individuals to " adults. " Again it seems as

though Patty would fall through the cracks if we didn't fight for her. CT is

a state with limited services for all individuals with disabilities. We have

to thank our state government for that. Massachusetts is one of the best for

services for ALL individuals. It is remarkable what the differences are, and

the attitude. This is something we all must change.

Life here seems to always get complicated. We have never taken the

easy path. Actually we have never been able to even see the easy path from a

distance but in the long run ours lives are more beautiful just because of the

trip we have traveled. So far it seems as though it all works out in the log

run, just not the way we planned. But honestly, our lives are good. I never

thought in a million years that Patty would accomplish all she has already. I

was afraid to dream for her. Actually I still don't dream that far ahead. I

just try to make sure her potential opportunities aren't taken away. I don't

know what her future holds, but then again I don't know what a's does

either. I just pray it is a future where she is happy and fulfilled. That is

exactly what Helen Keller Center is doing for her now.

There is so much more but I don't want to write a book. Wish us luck.

Moving day for is coming. Gosh I will miss him but we have to do it this

way

for Patty. I'll go up to him and our new home after work on Fridays and

return Monday mornings. Hope this doesn't take too long.

I wish the best to all of you for the coming new year. May all of your paths

in life be beautiful along the way.

Bonnie, Mom to Kris 21, Patty CHARGE 19, and wife to who wants the house

packed yesterday! Yea right!

[Guest guest]

We're moving!

It is finally official, we are moving! Or I should say we are closing on our

house and is moving to our new house in Ashland, MA! I will be moving

in with my mother here in our town. When we get Patty's life straightened out

and when I get a job up there I will be finally joining him. This is so

complicated. As I am sure all of you will understand it is my insurance we are

covered under, so I can't move until I get a job with insurance up there.

's

insurance is pitiful at best and each of us have medical necessities. Plus,

Pat is now at the National Helen Keller Center. When she completes the

training I always thought it would be easy no matter where we live to continue

HER

dreams and plans on living in CT with assistance for about a year or two with

her huge support systems including my large extended family. When she met her

goals there then she would move up to the Boston area to live on her own with

supports and with us near by. Sounds easy right? Not so.

The only assisted living programs offered in CT is covered under the

Department of Mental Retardation or if a person is Mentally ill. And for those

programs there is a five year waiting period, with the most severe being

placed first. Otherwise there is nothing. I was told the " disabled " person

usually lives with their family after they graduate. Patty would just break if

she

had to move back to this town- with my mother. Plus, there is no federal

definition of deaf/blind so fighting for her rights is difficult if our own

federal government doesn't accept that definition. Each state or area has their

own

definition. Remember now that Patty graduated she is an adult. Definitions

and services change for school aged individuals to " adults. " Again it seems as

though Patty would fall through the cracks if we didn't fight for her. CT is

a state with limited services for all individuals with disabilities. We have

to thank our state government for that. Massachusetts is one of the best for

services for ALL individuals. It is remarkable what the differences are, and

the attitude. This is something we all must change.

Life here seems to always get complicated. We have never taken the

easy path. Actually we have never been able to even see the easy path from a

distance but in the long run ours lives are more beautiful just because of the

trip we have traveled. So far it seems as though it all works out in the log

run, just not the way we planned. But honestly, our lives are good. I never

thought in a million years that Patty would accomplish all she has already. I

was afraid to dream for her. Actually I still don't dream that far ahead. I

just try to make sure her potential opportunities aren't taken away. I don't

know what her future holds, but then again I don't know what a's does

either. I just pray it is a future where she is happy and fulfilled. That is

exactly what Helen Keller Center is doing for her now.

There is so much more but I don't want to write a book. Wish us luck.

Moving day for is coming. Gosh I will miss him but we have to do it this

way

for Patty. I'll go up to him and our new home after work on Fridays and

return Monday mornings. Hope this doesn't take too long.

I wish the best to all of you for the coming new year. May all of your paths

in life be beautiful along the way.

Bonnie, Mom to Kris 21, Patty CHARGE 19, and wife to who wants the house

packed yesterday! Yea right!

[Guest guest]

Bonnie, happy that things are working out for you even if it is taking the

long road. have a happy new year--and hugs to all!!

maria and the guys

We're moving!

> It is finally official, we are moving! Or I should say we are closing on

our

> house and is moving to our new house in Ashland, MA! I will be

moving

> in with my mother here in our town. When we get Patty's life straightened

out

> and when I get a job up there I will be finally joining him. This is so

> complicated. As I am sure all of you will understand it is my insurance

we are

> covered under, so I can't move until I get a job with insurance up there.

's

> insurance is pitiful at best and each of us have medical necessities.

Plus,

> Pat is now at the National Helen Keller Center. When she completes the

> training I always thought it would be easy no matter where we live to

continue HER

> dreams and plans on living in CT with assistance for about a year or two

with

> her huge support systems including my large extended family. When she met

her

> goals there then she would move up to the Boston area to live on her own

with

> supports and with us near by. Sounds easy right? Not so.

> The only assisted living programs offered in CT is covered under

the

> Department of Mental Retardation or if a person is Mentally ill. And for

those

> programs there is a five year waiting period, with the most severe being

> placed first. Otherwise there is nothing. I was told the " disabled "

person

> usually lives with their family after they graduate. Patty would just

break if she

> had to move back to this town- with my mother. Plus, there is no federal

> definition of deaf/blind so fighting for her rights is difficult if our

own

> federal government doesn't accept that definition. Each state or area has

their own

> definition. Remember now that Patty graduated she is an adult.

Definitions

> and services change for school aged individuals to " adults. " Again it

seems as

> though Patty would fall through the cracks if we didn't fight for her. CT

is

> a state with limited services for all individuals with disabilities. We

have

> to thank our state government for that. Massachusetts is one of the best

for

> services for ALL individuals. It is remarkable what the differences are,

and

> the attitude. This is something we all must change.

> Life here seems to always get complicated. We have never taken the

> easy path. Actually we have never been able to even see the easy path

from a

> distance but in the long run ours lives are more beautiful just because of

the

> trip we have traveled. So far it seems as though it all works out in the

log

> run, just not the way we planned. But honestly, our lives are good. I

never

> thought in a million years that Patty would accomplish all she has

already. I

> was afraid to dream for her. Actually I still don't dream that far ahead.

I

> just try to make sure her potential opportunities aren't taken away. I

don't

> know what her future holds, but then again I don't know what a's

does

> either. I just pray it is a future where she is happy and fulfilled.

That is

> exactly what Helen Keller Center is doing for her now.

>

> There is so much more but I don't want to write a book. Wish us luck.

> Moving day for is coming. Gosh I will miss him but we have to do it

this way

> for Patty. I'll go up to him and our new home after work on Fridays and

> return Monday mornings. Hope this doesn't take too long.

>

> I wish the best to all of you for the coming new year. May all of your

paths

> in life be beautiful along the way.

>

> Bonnie, Mom to Kris 21, Patty CHARGE 19, and wife to who wants the

house

> packed yesterday! Yea right!

>

>

>

>

[Guest guest]

It is official. I am extremely unnerved. How do we begin to forge a path to

the future for our children? A 5 year waiting list? Again, I am unnerved. We

didn't do the multiple legal battles to achieve Perkins to face this. Ugh.

Sorry, but I am really down. How have others done this? Martha

I think of us (i.e., our family) as the oldsters on this list, but there

must be others who've met the hurdles of adult care and have found solid,

good situations. Please respond to the list - with the good and the bad

news.

[Guest guest]

It is official. I am extremely unnerved. How do we begin to forge a path to

the future for our children? A 5 year waiting list? Again, I am unnerved. We

didn't do the multiple legal battles to achieve Perkins to face this. Ugh.

Sorry, but I am really down. How have others done this? Martha

I think of us (i.e., our family) as the oldsters on this list, but there

must be others who've met the hurdles of adult care and have found solid,

good situations. Please respond to the list - with the good and the bad

news.

[Guest guest]

Martha,

Maybe I should explain more. First of all I am a bit jealous. We did not

find out about Perkins until Patty was fourteen. They are marvelous! If I knew

then what I know now Pat would have been educated at Perkins. It was at

Perkins that I finally allowed a triennial evaluation. I never did before

because

the people here just couldn't fathom the impact of her disabilities and what

they meant to her performance and potential. I worked here in town with some

of the very same people (who said they were specialists) who said they knew

what they were doing. There is so much more to the story but when we found

Perkins and all the programs there Pats life changed. So did our outlook for

her.

Pat also attended a summer independent living program and a summer

vocational program there. Each time we picked her up we picked up a more

independent,

happy person. What amazed me is finally there were all these true specialists

who finally put Patty together. No longer was she hearing impaired, visually

impaired, have health difficulties, OCD... She was treated as a whole

person. And they didn't view her as " the disabled kid " but as Patty. There is

a

difference. You have the absolute best for your child and because of that she

will grow to levels beyond what others could dare to imagine. Her future is

brighter because of your fighting for her.

What happened here though is I live in a small community where my

father was a teacher, my brother in law a principal, my sister an administrator,

my mother worked in the computer lab and I worked in the school system as an

assistant. There were so many people who silently helped us along the way

because every time we tried to advocate for Patty about something we were met

with

battle after battle. I was often told I was a parent who didn't accept my

daughters disabilities. Can you imaging that, we live with her, hold her hands

during surgeries, have to yell at her just to have her hear sometimes. We were

also continually told she should be in the classes (some of which were

contained) for the mentally challenged which were taught by some of the very

same

people who couldn't figure out her disabilities. That is what we fought

against, and what Patty fought against. Luckily we had teachers, staff, and

others

telling us on the side what was going to happen before meetings, who said what,

and such. Patty was in the inclusion model-before there was the term

inclusion. But honestly if I had found out about Perkins when she was little, I

would have fought for her to go there. I wanted that after I found them but it

was too late. You are a parent who has the best for you child.

After she graduated Pat's transition plan was to attend the Helen

Keller Center-who are the specialists for our children when they become adults.

There was so much she missed here in this town. But that got messed up after

she graduated. The paper work wasn't done before she graduated which we only

found out till after she graduated. Of course we had to fight again but that

is where she is now! She is doing marvelous there, learning so many

independent skills, vocational skills, balancing a checkbook and finally

learning and

having social opportunities. More than that I haven't seen her this happy in

such a long time.

BUT, our problem is that our state here in CT does not have a

definition of deaf/blind. Each state does their own thing. It is shameful.

Maybe

your state does, I don't know. Ours doesn't. Our federal government doesn't

either. When we applied for SSI for her when she turned 18 that too was a

horrendous battle. Because of her numbers she didn't meet each specific

category

of disabled. She wasn't deaf enough, blind enough, or disabled enough. I even

found out they labeled her as having an " Organic mental disorder " which her

psychologist said is untrue. It was AWFUL. How lucky are we that we found she

really IS blind because she had a field vision test showing she has a 10 to

20 degree field vision. So now she has the label of blind. YEA!? What would

have happened if we weren't parents who fight for our children?

We are moving to MA because and I put our lives on hold for 21

years for our girls. Now we are moving forward. It is as though we were guided

this way because MA is a state that has marvelous services for the

deaf/blind. Patty will come back to CT for about a year because of her multiple

support

services here. We will spend time up there finding services for her there,

like doctors. You know it is more costly to not have services but our

government can't figure that out. Anyway, Patty has the right to live

independently,

go work, have social opportunities. She does need assistance though-her math

stinks-she trusts too many people, she is disabled for goodness sake. So we

will have to live nearby. Not with her but nearby. We are also now her

conservators to make sure she isn't taken advantage of and to help continue to

advocate for her while protecting her wants and needs.

It gets so complicated. The horrific part is each state has their own

requirements. Our governor here in my opinion an evil man. He already has

cut numerous services, while fixing a cottage of his. His statement to someone

actually was something like - let them sit at home and collect a check! And

so the rich get more.

What we need to do is to change things for our all children. Patty

grew up fast. All of you need to know laws are different for school aged

children than adults. It seemed as though she was unprotected by our country.

It

all comes down to money in the long run. Your children need the protection of

the law. How many CHARGE children are there now in this country? We need

some sort of federal mandate making each state accountable. If you live in a

state like CT after they graduate they either are no longer disabled or they

have

to get services under a program that they really shouldn't have to. Plus

there is that five year waiting list. There are so many people with

disabilities

waiting for a life. We don't take care of those who have no voice. They

don't have to have a voice so why should we?! Check out the services of you

state. If worst comes to worst, look at MA. They are cutting budgets too, but

at

least they are there. Plus I am finally going to do something with my life.

Oh, don't worry about Patty though. Even though CT doesn't have services,

etc. I am not going to let her constitutional rights be taken away. I guess you

can say I have learned how to be a fighter. I know we all are here. We have

had to watch our children fight. How can we do any less?

Bonnie, Mom of Kris 21, Patty CHARGE 19, and wife to

[Guest guest]

In AZ, services for deafblind adults are scarce. There is one group home in

Phoenix, which was started by a sib for his sister. There is one other

client who lives in their family home, now staffed around the clock and he

has moved into his own place. It is not an ideal place at all, but the only

one specific for deafblindness here. It is also my understanding that group

homes for the DD population have long waiting lists. With the current

political climate, I do not see that changing anytime soon.

I see Dylan being able to lead a semi-independent life. A life where he can

make choices for himself, but one that he will continue to need assistance

from technology or Interveners to access the information he is not getting

through his vision and his hearing. The thought of the behaviors worsening

as he gets older is my biggest fear and why I am so concerned about learning

more about them now. In the back of my head I see us building a house with

a guest house on the property when he is an adult, a place where he can have

his own space, but we can still be close. Even them it would have to be

built on bus routes, which is not where we would want to live, so he could

have transportation to work etc. I am concerned that at some point the

responsibility of making sure Dylan's needs are met will fall to my daughter

Kayla.

When folks talk about the sandwich generation, lately I have been feeling

it. My father has geriatric related psychosis, my mother-in-law was just

diagnosed with Alzheimer's Disease, and with Dylan's likeliness of needing

our care into adulthood is a little daunting. Focusing on the goodness of

today, while planning in advance and attempting to prevent some of the adult

obstacles as best we can is how we make it through.

Caring for Dylan as an adult is really not the fear, it is the belief that

he is capable of so much more, and feeling that even with early intervention

from birth and deafblind services, since he was three that we are still not

releasing that potential.

Kim

Mom to Dylan 7 CHaRGE, Kayla 13 today, Tyler 15

> It is official. I am extremely unnerved. How do we begin to forge a path to

> the future for our children? A 5 year waiting list? Again, I am unnerved. We

> didn't do the multiple legal battles to achieve Perkins to face this. Ugh.

> Sorry, but I am really down. How have others done this? Martha

> I think of us (i.e., our family) as the oldsters on this list, but there

> must be others who've met the hurdles of adult care and have found solid,

> good situations. Please respond to the list - with the good and the bad

> news.

>

>

> 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]

Hi Martha,

I am so sorry this has hit you during a vacation time. I think this part of the

kid's lives has got to be the hardest for the parents. The other

markers--starting school (or finding a school), doing ok, passing past the

extreme health conditions, beginning voc training--become lost in the miasma

that is " transition " . I hope you know that the transition people at school and

the rest of us will help as much as we can.

Hopefully, there will be others here that can respond with positive stories.

pam

[Guest guest]

Dear Bonnie,

WOW and thank you.

pam

[Guest guest]

Dear Bonnie,

WOW and thank you.

pam

[Guest guest]

Bonnie:

I am profoundly grateful for your post- as I am for Pam's. I'm too

exhausted now to write as much as I'd like but will do so later. One thing

you said really hit me. My husband and I just realized that we're far from

wedded to our state (no family here, etc.). We could need to bring

back to Missouri for a few years until my husband retires, but we, too, are

thinking about MA. That's actually where we married, went to school, etc. In

any case, I need to crash, but I thank you for your good, good post and hope

to talk more. Martha