Re: Life will change soon

July 3, 2004

I think that is one of the hardest things; trying to balance work and kids

with special needs. If I did not have a flexible boss (who happens to be

Dylan's Godfather) I would have been fired long ago, for all the time I take

off for appts, when he is feeling off etc. Even so, I know that a lot of

Dylan's learned helplessness happened after I increased my hours from 24 -

32/ week. I am always feeling like I haven't gotten my hours in for work

and I haven't done enough with Dylan.

I am sure your being home will benefit Patty, but it is a bit sad that even

now as an adult it still requires that you not work.

Kim L

> I have decided to make a few changes in our lives. Patty continues to sit

> here at home. She got turned down for a transportation program in MA because

> we

> didn't have a doctor's note... It is complicated. Without this ride she

> can't get to medical appointments, or any where! The MA commission for the

> Blind

> is going to try to fix that, but they should have done it in the first place.

> I work in the city and leave at 5:45 to get home at 5:15. And still Patty

> sits. The squeeky wheel gets the greese and I haven't been that. I have been

> just too tired to fight. Not much longer though!

> I took a day off and went to social security with her. They never

> changed her address. Wouldn't you believe they finally did which means a

> change in

> SSI of over $300 more a month! That is still far below the standard of living

> but who the heck cares.

> Then I also got her a MA Identification card and a transit pass.

> I also took another day off to take her to a vocational program in MA.

> This lady is great. But the point is I had to drive Patty there or she would

> have had to wait longer. So I have put in my resignation. I think it is

> almost abusive for us to have her sit here with little to do. We as a family

> have

> kept her busy but that shouldn't be.

> My last day is going to be the 23rd!

>

> I have a feeling Patty's life is going to be good soon.

>

> Bonnie, mother to a 21 and going to be a senior at college, Patty

> CHARGE 19, and wife to who is happy with my quitting because he won't

> have to

> do the laundry, cleaning and cooking much longer!

>

July 3, 2004

I think that is one of the hardest things; trying to balance work and kids

with special needs. If I did not have a flexible boss (who happens to be

Dylan's Godfather) I would have been fired long ago, for all the time I take

off for appts, when he is feeling off etc. Even so, I know that a lot of

Dylan's learned helplessness happened after I increased my hours from 24 -

32/ week. I am always feeling like I haven't gotten my hours in for work

and I haven't done enough with Dylan.

I am sure your being home will benefit Patty, but it is a bit sad that even

now as an adult it still requires that you not work.

Kim L

> I have decided to make a few changes in our lives. Patty continues to sit

> here at home. She got turned down for a transportation program in MA because

> we

> didn't have a doctor's note... It is complicated. Without this ride she

> can't get to medical appointments, or any where! The MA commission for the

> Blind

> is going to try to fix that, but they should have done it in the first place.

> I work in the city and leave at 5:45 to get home at 5:15. And still Patty

> sits. The squeeky wheel gets the greese and I haven't been that. I have been

> just too tired to fight. Not much longer though!

> I took a day off and went to social security with her. They never

> changed her address. Wouldn't you believe they finally did which means a

> change in

> SSI of over $300 more a month! That is still far below the standard of living

> but who the heck cares.

> Then I also got her a MA Identification card and a transit pass.

> I also took another day off to take her to a vocational program in MA.

> This lady is great. But the point is I had to drive Patty there or she would

> have had to wait longer. So I have put in my resignation. I think it is

> almost abusive for us to have her sit here with little to do. We as a family

> have

> kept her busy but that shouldn't be.

> My last day is going to be the 23rd!

>

> I have a feeling Patty's life is going to be good soon.

>

> Bonnie, mother to a 21 and going to be a senior at college, Patty

> CHARGE 19, and wife to who is happy with my quitting because he won't

> have to

> do the laundry, cleaning and cooking much longer!

>

July 3, 2004

I think that is one of the hardest things; trying to balance work and kids

with special needs. If I did not have a flexible boss (who happens to be

Dylan's Godfather) I would have been fired long ago, for all the time I take

off for appts, when he is feeling off etc. Even so, I know that a lot of

Dylan's learned helplessness happened after I increased my hours from 24 -

32/ week. I am always feeling like I haven't gotten my hours in for work

and I haven't done enough with Dylan.

I am sure your being home will benefit Patty, but it is a bit sad that even

now as an adult it still requires that you not work.

Kim L

> I have decided to make a few changes in our lives. Patty continues to sit

> here at home. She got turned down for a transportation program in MA because

> we

> didn't have a doctor's note... It is complicated. Without this ride she

> can't get to medical appointments, or any where! The MA commission for the

> Blind

> is going to try to fix that, but they should have done it in the first place.

> I work in the city and leave at 5:45 to get home at 5:15. And still Patty

> sits. The squeeky wheel gets the greese and I haven't been that. I have been

> just too tired to fight. Not much longer though!

> I took a day off and went to social security with her. They never

> changed her address. Wouldn't you believe they finally did which means a

> change in

> SSI of over $300 more a month! That is still far below the standard of living

> but who the heck cares.

> Then I also got her a MA Identification card and a transit pass.

> I also took another day off to take her to a vocational program in MA.

> This lady is great. But the point is I had to drive Patty there or she would

> have had to wait longer. So I have put in my resignation. I think it is

> almost abusive for us to have her sit here with little to do. We as a family

> have

> kept her busy but that shouldn't be.

> My last day is going to be the 23rd!

>

> I have a feeling Patty's life is going to be good soon.

>

> Bonnie, mother to a 21 and going to be a senior at college, Patty

> CHARGE 19, and wife to who is happy with my quitting because he won't

> have to

> do the laundry, cleaning and cooking much longer!

>

July 3, 2004

It is too bad, Bonnie, that Patti cannot get the help she needs otherwise

but I know she will be thrilled to hav eyou there with her.

Kay

Life will change soon

> I have decided to make a few changes in our lives. Patty continues to sit

> here at home. She got turned down for a transportation program in MA

because we

> didn't have a doctor's note... It is complicated. Without this ride she

> can't get to medical appointments, or any where! The MA commission for

the Blind

> is going to try to fix that, but they should have done it in the first

place.

> I work in the city and leave at 5:45 to get home at 5:15. And still Patty

> sits. The squeeky wheel gets the greese and I haven't been that. I have

been

> just too tired to fight. Not much longer though!

> I took a day off and went to social security with her. They never

> changed her address. Wouldn't you believe they finally did which means a

change in

> SSI of over $300 more a month! That is still far below the standard of

living

> but who the heck cares.

> Then I also got her a MA Identification card and a transit pass.

> I also took another day off to take her to a vocational program in MA.

> This lady is great. But the point is I had to drive Patty there or she

would

> have had to wait longer. So I have put in my resignation. I think it is

> almost abusive for us to have her sit here with little to do. We as a

family have

> kept her busy but that shouldn't be.

> My last day is going to be the 23rd!

>

> I have a feeling Patty's life is going to be good soon.

>

> Bonnie, mother to a 21 and going to be a senior at college, Patty

> CHARGE 19, and wife to who is happy with my quitting because he won't

have to

> do the laundry, cleaning and cooking much longer!

>

July 3, 2004

It is too bad, Bonnie, that Patti cannot get the help she needs otherwise

but I know she will be thrilled to hav eyou there with her.

Kay

Life will change soon

> I have decided to make a few changes in our lives. Patty continues to sit

> here at home. She got turned down for a transportation program in MA

because we

> didn't have a doctor's note... It is complicated. Without this ride she

> can't get to medical appointments, or any where! The MA commission for

the Blind

> is going to try to fix that, but they should have done it in the first

place.

> I work in the city and leave at 5:45 to get home at 5:15. And still Patty

> sits. The squeeky wheel gets the greese and I haven't been that. I have

been

> just too tired to fight. Not much longer though!

> I took a day off and went to social security with her. They never

> changed her address. Wouldn't you believe they finally did which means a

change in

> SSI of over $300 more a month! That is still far below the standard of

living

> but who the heck cares.

> Then I also got her a MA Identification card and a transit pass.

> I also took another day off to take her to a vocational program in MA.

> This lady is great. But the point is I had to drive Patty there or she

would

> have had to wait longer. So I have put in my resignation. I think it is

> almost abusive for us to have her sit here with little to do. We as a

family have

> kept her busy but that shouldn't be.

> My last day is going to be the 23rd!

>

> I have a feeling Patty's life is going to be good soon.

>

> Bonnie, mother to a 21 and going to be a senior at college, Patty

> CHARGE 19, and wife to who is happy with my quitting because he won't

have to

> do the laundry, cleaning and cooking much longer!

>

July 3, 2004

Bonnie-

I'm sorry you have to make these kind of decisions. It's frustrating for

all of us to have to choose between a job or career and our child. I know

all mom's face this decision, but it's that big DIF again (Duration,

Intensity, Frequency). You wouldn't expect to be making this choice when

your child is 19. I wouldn't even expect to still be facing that choice

with Aubrie at 6!

I'm sure it felt good to be " out on your own " for a bit. But hopefully

it'll be a comfortable fit for all of you when you are back home again. I

often find myself reminded that I (and our family) just can't do all of the

things that regular people do because of the time and energy required to

deal with CHARGE. I almost said " to deal with Aubrie " -- but it's not

really her -- it's CHARGE.

BTW-- We'll be at Perkins for an eval the week before Columbus Day. If you

are close enough, it'd be wonderful to have a visit!

Michele W

Aubrie's mom

July 3, 2004

Bonnie-

I'm sorry you have to make these kind of decisions. It's frustrating for

all of us to have to choose between a job or career and our child. I know

all mom's face this decision, but it's that big DIF again (Duration,

Intensity, Frequency). You wouldn't expect to be making this choice when

your child is 19. I wouldn't even expect to still be facing that choice

with Aubrie at 6!

I'm sure it felt good to be " out on your own " for a bit. But hopefully

it'll be a comfortable fit for all of you when you are back home again. I

often find myself reminded that I (and our family) just can't do all of the

things that regular people do because of the time and energy required to

deal with CHARGE. I almost said " to deal with Aubrie " -- but it's not

really her -- it's CHARGE.

BTW-- We'll be at Perkins for an eval the week before Columbus Day. If you

are close enough, it'd be wonderful to have a visit!

Michele W

Aubrie's mom

July 3, 2004

Bonnie-

I'm sorry you have to make these kind of decisions. It's frustrating for

all of us to have to choose between a job or career and our child. I know

all mom's face this decision, but it's that big DIF again (Duration,

Intensity, Frequency). You wouldn't expect to be making this choice when

your child is 19. I wouldn't even expect to still be facing that choice

with Aubrie at 6!

I'm sure it felt good to be " out on your own " for a bit. But hopefully

it'll be a comfortable fit for all of you when you are back home again. I

often find myself reminded that I (and our family) just can't do all of the

things that regular people do because of the time and energy required to

deal with CHARGE. I almost said " to deal with Aubrie " -- but it's not

really her -- it's CHARGE.

BTW-- We'll be at Perkins for an eval the week before Columbus Day. If you

are close enough, it'd be wonderful to have a visit!

Michele W

Aubrie's mom

July 4, 2004

Bonnie,

Your life changes are in my prayers. Sounds like a good plan but only you

would know for sure.

Lynn

Life will change soon

I have decided to make a few changes in our lives. Patty continues to sit

here at home. She got turned down for a transportation program in MA because

we

didn't have a doctor's note... It is complicated. Without this ride she

can't get to medical appointments, or any where! The MA commission for the

Blind

is going to try to fix that, but they should have done it in the first place.

I work in the city and leave at 5:45 to get home at 5:15. And still Patty

sits. The squeeky wheel gets the greese and I haven't been that. I have been

just too tired to fight. Not much longer though!

I took a day off and went to social security with her. They never

changed her address. Wouldn't you believe they finally did which means a

change in

SSI of over $300 more a month! That is still far below the standard of living

but who the heck cares.

Then I also got her a MA Identification card and a transit pass.

I also took another day off to take her to a vocational program in MA.

This lady is great. But the point is I had to drive Patty there or she would

have had to wait longer. So I have put in my resignation. I think it is

almost abusive for us to have her sit here with little to do. We as a family

have

kept her busy but that shouldn't be.

My last day is going to be the 23rd!

I have a feeling Patty's life is going to be good soon.

Bonnie, mother to a 21 and going to be a senior at college, Patty

CHARGE 19, and wife to who is happy with my quitting because he won't

have to

do the laundry, cleaning and cooking much longer!

July 4, 2004

My mind has gone blank. When is Columbus Day? I'd love to meet another

CHARGE parent - you would be my first! comes home for August and goes

back to Perkins after Labor Day. Will you be staying in a guest house?

Martha

July 5, 2004

Martha,

How is it that you have not met the other parents??? I am shocked and

embarrassed!! For as often as you are, there are parents of the other CHARGE

kids here all the time. PLease let me arrange this for you--Oh my gosh, I

cannot believe it!!! Let me know when you are arriving to get Kate and I'll see

what I can do.

In the meantime, I am glad that things are moving ahead with you regarding

Kate's transition--I am assuming that you are using Sue Summersby and will let

people know what you need.

I am off to get my things together for school tomorrow. And to spend some time

with your long-legged girl tomorrow in the testing room.

pam

July 5, 2004

Martha,

How is it that you have not met the other parents??? I am shocked and

embarrassed!! For as often as you are, there are parents of the other CHARGE

kids here all the time. PLease let me arrange this for you--Oh my gosh, I

cannot believe it!!! Let me know when you are arriving to get Kate and I'll see

what I can do.

In the meantime, I am glad that things are moving ahead with you regarding

Kate's transition--I am assuming that you are using Sue Summersby and will let

people know what you need.

I am off to get my things together for school tomorrow. And to spend some time

with your long-legged girl tomorrow in the testing room.

pam

July 5, 2004

Pam: It was so good to see your post. I've just realized that Andy and I

have met Will's mother (however briefly - and the two kiddos aren't that

similar), but that's it. I would love to connect with parents not just on

the CHARGE list. We get in on the evening of the 19th and don't leave until

the 23rd (because of differing fares). 's IEP is on the 21st at 1:00

your time, I think.

I assume that you'll be seeing in the testing room for the eval.

I'd forgotten all about that! As things wind down for the year, I think Andy

and I just get more and more forgetful - or more odd; that's more likely!

Sharon Streett is still researching comp ed for and will make up

her mind prior to the IEP. Please let know. I don't know what the legal

issues are, but Andy and I remembered today that the district and state let

go for many months without even offering a program. This is when we

had K. at home, and Sharon provided her psychologist, etc.

On a brighter note, our extremely neurotic Airedale who has always

declined to climb our stairs, has suddenly decided to do so when it

thunders. Alas, the year old " puppy " joins him and also joins us in our bed.

We've laughed and laughed --- lord only knows how will handle the

change...Life in the midwest is peculiar. In New Orleans, my brother put his

St. Bernard (wouldn't cross doorways) on Prozac. Here, we just laugh. Umm. I

wonder if OCD just runs in family dogs and is transmitted to the rest of

us...

Can't wait to see everyone!

Martha

July 5, 2004

Pam: It was so good to see your post. I've just realized that Andy and I

have met Will's mother (however briefly - and the two kiddos aren't that

similar), but that's it. I would love to connect with parents not just on

the CHARGE list. We get in on the evening of the 19th and don't leave until

the 23rd (because of differing fares). 's IEP is on the 21st at 1:00

your time, I think.

I assume that you'll be seeing in the testing room for the eval.

I'd forgotten all about that! As things wind down for the year, I think Andy

and I just get more and more forgetful - or more odd; that's more likely!

Sharon Streett is still researching comp ed for and will make up

her mind prior to the IEP. Please let know. I don't know what the legal

issues are, but Andy and I remembered today that the district and state let

go for many months without even offering a program. This is when we

had K. at home, and Sharon provided her psychologist, etc.

On a brighter note, our extremely neurotic Airedale who has always

declined to climb our stairs, has suddenly decided to do so when it

thunders. Alas, the year old " puppy " joins him and also joins us in our bed.

We've laughed and laughed --- lord only knows how will handle the

change...Life in the midwest is peculiar. In New Orleans, my brother put his

St. Bernard (wouldn't cross doorways) on Prozac. Here, we just laugh. Umm. I

wonder if OCD just runs in family dogs and is transmitted to the rest of

us...

Can't wait to see everyone!

Martha

July 5, 2004

> Some of us need to think about setting up an ever-so-wonderful place

for our

> adult children. I just don't believe it would be impossible! Any

thoughts?

In Canada, the late 80's many of the children with Rubella were

graduating the same year. At the residential school we did set up

" off-campus " transition programs to ease the jump into adult life. At

this time, many of the parents got together and petitioned the gov't

for funding for adult supported living. They developed their own

non-profit agency. With the initial funding they were able to buy

three houses across Toronto, with 3 young adults and support staff in

each house, and also were able to hire experienced staff for

administration and training. Now the program continues to grow, but

the houses are rented using part of the pension. Many houses do their

own fundraising with the young adults to support extra living expenses

for fun things. They have job placements, attend courses, go to

exercises clubs, etc. with support staff. Another group of parents

started a non-profit agency, where initially it was a whole apartment

building, with separate units. Support was interchangable in the

units, but most recieved one to one in order to access the

community.The LIONS Club helped to fund the initial costs. They have

since moved to a one floor facility newly built, again with the help

of the LIONS Club, with ~10 little apartments, and some common areas

for such things as crafts, woodworking, group meals when wanted,

etc... Still other parents choose to make their own separate setting,

and have more control of the program. They run administration costs

and funding through a larger agency for deafblind. The individual

lives in her own apartment with roommates from the University, all

chosen by the parents. These students help cover the overnights,

getting reduced rent, and also get paid to work some of the

recreational hours to go swimming, play table pool, exercise club,

etc.. There is also a one-to-one for 7-3 to help the indivudal go to

community courses such as pottery, computer classes, attend job

placements, and goes to the literacy course offered by CNIB.

Others have opted for their children to be at home, using support

staff when in the community, and still others made apartments within

their home, using gov't money to help renovate.

Good luck thinking about these very difficult decisions.

Ann Gloyn

Specialist Teacher

Canada

July 5, 2004

Columbus Day is in October. We'll be at Perkins Oct 4-6. We'll arrive

before 5pm on the 4th with the eve free. Evals on Tues. Wed is " overflow "

day for anything we don't get done or discussed on Tues. We'll leave Wed pm

by train. I hope to stay in guest housing.

I'd love to meet you if you are able to be around then! Sounds like Pam

will try to hook you up with another CHARGE family or 2 in the meantime.

Take care!

Michele W

July 5, 2004

Columbus Day is in October. We'll be at Perkins Oct 4-6. We'll arrive

before 5pm on the 4th with the eve free. Evals on Tues. Wed is " overflow "

day for anything we don't get done or discussed on Tues. We'll leave Wed pm

by train. I hope to stay in guest housing.

I'd love to meet you if you are able to be around then! Sounds like Pam

will try to hook you up with another CHARGE family or 2 in the meantime.

Take care!

Michele W

July 5, 2004

Columbus Day is in October. We'll be at Perkins Oct 4-6. We'll arrive

before 5pm on the 4th with the eve free. Evals on Tues. Wed is " overflow "

day for anything we don't get done or discussed on Tues. We'll leave Wed pm

by train. I hope to stay in guest housing.

I'd love to meet you if you are able to be around then! Sounds like Pam

will try to hook you up with another CHARGE family or 2 in the meantime.

Take care!

Michele W

July 5, 2004

WOW!!!!! In AZ there is only one group home in the whole state. It was

started by a brother for his sibling (age 50). He made the family home that

he and his sister had been living in, into a group home and he moved out.

Now another adult client lives there and they hire staff to come in and work

with them, although training in deafblindness is an ongoing issue.

Kim L

>

>> Some of us need to think about setting up an ever-so-wonderful place

> for our

>> adult children. I just don't believe it would be impossible! Any

> thoughts?

>

> In Canada, the late 80's many of the children with Rubella were

> graduating the same year. At the residential school we did set up

> " off-campus " transition programs to ease the jump into adult life. At

> this time, many of the parents got together and petitioned the gov't

> for funding for adult supported living. They developed their own

> non-profit agency. With the initial funding they were able to buy

> three houses across Toronto, with 3 young adults and support staff in

> each house, and also were able to hire experienced staff for

> administration and training. Now the program continues to grow, but

> the houses are rented using part of the pension. Many houses do their

> own fundraising with the young adults to support extra living expenses

> for fun things. They have job placements, attend courses, go to

> exercises clubs, etc. with support staff. Another group of parents

> started a non-profit agency, where initially it was a whole apartment

> building, with separate units. Support was interchangable in the

> units, but most recieved one to one in order to access the

> community.The LIONS Club helped to fund the initial costs. They have

> since moved to a one floor facility newly built, again with the help

> of the LIONS Club, with ~10 little apartments, and some common areas

> for such things as crafts, woodworking, group meals when wanted,

> etc... Still other parents choose to make their own separate setting,

> and have more control of the program. They run administration costs

> and funding through a larger agency for deafblind. The individual

> lives in her own apartment with roommates from the University, all

> chosen by the parents. These students help cover the overnights,

> getting reduced rent, and also get paid to work some of the

> recreational hours to go swimming, play table pool, exercise club,

> etc.. There is also a one-to-one for 7-3 to help the indivudal go to

> community courses such as pottery, computer classes, attend job

> placements, and goes to the literacy course offered by CNIB.

> Others have opted for their children to be at home, using support

> staff when in the community, and still others made apartments within

> their home, using gov't money to help renovate.

> Good luck thinking about these very difficult decisions.

> Ann Gloyn

> Specialist Teacher

> Canada

>

> 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!

>

July 5, 2004