Re: Where Do Your Older Children Live?

[Guest guest]

Thanks for bringing this topic up Jill. I would also like to hear how others

handle this transition and hear stories about what their loved ones do to fill

up their time and to lead a fulfilling life. Our daughter Annie is aging out of

the school system on Oct. 2 (She turns 22 on Oct. 3). She does have 2 volunteer

positions that we intend to have her continue. She is independent in these two

places because there are fantastic natural supports for her. In other

situations and as far as transportation she would not be independent. She still

needs much support although she is very verbal. We have not heard anything

regarding home based waiver funding. How do you all handle this and work full

time? I am feeling at a loss.

Thanks All!

Joanne

-------------- Original message --------------

From: jillplato@...

Hello group!

My daughter, who has autism, is 17, and I have so many things to figure out

for her future. She is still nonverbal, but she can type really well. I

would say that she is moderately affected by autism.

My big questions are if your child lives away from home, where does he or

she live? Is it successful and is your child happy there? How did you find

the place? What problems have you had?

For those whose child still lives at home, but has aged out of school, what

does your child do during the day? If he or she is working, how did you find

the job, etc.

We live in a rural area downstate, but still it would help me so much to

hear from you as I begin to navigate through this new phase of our daughter's

life.

Jill

Kane, IL

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

I am not a parent but a sibling of three brothers with disabilites and one

also has a serious mental illness. My brothers all lived with my mother until

she passed away 10 years ago. We had a crisis on our hands when that

happened. My brothers now all live in the community after living with their

sisters for a number of years. My oldest brother Marty got his first apartment

in

his late 40s and is happy as a clam. He has high functioning autism and is

very verbal. He has a part time factory job and a section eight apartment

(his second) in Woodstock. My sister is his rep payee for SS and my husband is

his health care power of attorney. He manages pretty well with our help and

is involved with a self advocacy group.

My brother lives in a very nice group home in Marengo. The only

problem there is he is probably the highest functioning man there so the mix of

people could be a little better for him. The staff is lovely and it really

is like a home. The problem, they close on a number of holidays and sometimes

give us very little notice. This is really upsetting to me. This is su

pposed to be his home, homes do not close.

My brother is in a group home in Woodstock. This was an emergency

placement that happened when his mental illness progressed to such a degree

that my sister could no longer care for him. We are least happy with this

situation. His home has more staff turnover and is cramped. We are looking

for

a better option. It is not terrible but not what we would want for our

brother. It is hard to see one in such a nice home and the other in a marginal

home.

My advise is the sooner you start looking the better. If my mother had put

the guys on a waiting list then perhaps it would not have taken almost 10

years to get them settled and might be in a better place. Nora

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Hi Jill. My son is 27 and has Down Syndrome and lives at home. He works for

Jewel Foods and has for 6 years. He had a job coach at high school that helped

the students get several jobs while in school (they were paid by the school not

the work place), It helped see what they were best at. works part time

since graduation 12-20 hours a week. My husband and I are retired and we take

him places or he watches movies, plays his game system, looks at his magazines,

plays with the dog etc. He also goes to several activities with Gateway which

works with the local Park district. This is mostly on evenings and weekends.

He goes every other Friday with others his age to social activities. Then they

have other things you can sign up for. Since he works he can not attend many

day programs but in the summer he does sign up for ball games and special

events. We just received a home based wavier so we will be looking into what

else he can get into. We are also looking

at living situations for the future. It is a big change for them coming from

school all day to missing that and their friends. Good luck and thanks for

starting the topic. It will help me too.

Shirley

jillplato@... wrote:

Hello group!

My daughter, who has autism, is 17, and I have so many things to figure out

for her future. She is still nonverbal, but she can type really well. I

would say that she is moderately affected by autism.

My big questions are if your child lives away from home, where does he or

she live? Is it successful and is your child happy there? How did you find

the place? What problems have you had?

For those whose child still lives at home, but has aged out of school, what

does your child do during the day? If he or she is working, how did you find

the job, etc.

We live in a rural area downstate, but still it would help me so much to

hear from you as I begin to navigate through this new phase of our daughter's

life.

Jill

Kane, IL

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

please do not write me again

From: Yoda84@... <Yoda84@...>

Subject: Re: Where Do Your Older Children Live?

IPADDUnite

Date: Friday, July 4, 2008, 10:17 AM

I am not a parent but a sibling of three brothers with disabilites and one

also has a serious mental illness. My brothers all lived with my mother until

she passed away 10 years ago. We had a crisis on our hands when that

happened. My brothers now all live in the community after living with their

sisters for a number of years. My oldest brother Marty got his first apartment

in

his late 40s and is happy as a clam. He has high functioning autism and is

very verbal. He has a part time factory job and a section eight apartment

(his second) in Woodstock. My sister is his rep payee for SS and my husband is

his health care power of attorney. He manages pretty well with our help and

is involved with a self advocacy group.

My brother lives in a very nice group home in Marengo. The only

problem there is he is probably the highest functioning man there so the mix of

people could be a little better for him. The staff is lovely and it really

is like a home. The problem, they close on a number of holidays and sometimes

give us very little notice. This is really upsetting to me. This is su

pposed to be his home, homes do not close.

My brother is in a group home in Woodstock. This was an emergency

placement that happened when his mental illness progressed to such a degree

that my sister could no longer care for him. We are least happy with this

situation. His home has more staff turnover and is cramped. We are looking for

a better option. It is not terrible but not what we would want for our

brother. It is hard to see one in such a nice home and the other in a marginal

home.

My advise is the sooner you start looking the better. If my mother had put

the guys on a waiting list then perhaps it would not have taken almost 10

years to get them settled and might be in a better place. Nora

************ **Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos. aol.com/used? ncid=aolaut00050

000000007)

[Guest guest]

Hello,

I have a daughter with Aspergers . I often wonder what would happen after my

husband and I are gone. And I feel like I'm alone in the world, I found out more

info from the IPADDUnite group then any other doctor or program she has been in.

Can you give me any names of some group homes.

Thanks

Yoda84@... wrote: I am not a parent but a sibling of three brothers with

disabilites and one

also has a serious mental illness. My brothers all lived with my mother until

she passed away 10 years ago. We had a crisis on our hands when that

happened. My brothers now all live in the community after living with their

sisters for a number of years. My oldest brother Marty got his first apartment

in

his late 40s and is happy as a clam. He has high functioning autism and is

very verbal. He has a part time factory job and a section eight apartment

(his second) in Woodstock. My sister is his rep payee for SS and my husband is

his health care power of attorney. He manages pretty well with our help and

is involved with a self advocacy group.

My brother lives in a very nice group home in Marengo. The only

problem there is he is probably the highest functioning man there so the mix of

people could be a little better for him. The staff is lovely and it really

is like a home. The problem, they close on a number of holidays and sometimes

give us very little notice. This is really upsetting to me. This is su

pposed to be his home, homes do not close.

My brother is in a group home in Woodstock. This was an emergency

placement that happened when his mental illness progressed to such a degree

that my sister could no longer care for him. We are least happy with this

situation. His home has more staff turnover and is cramped. We are looking

for

a better option. It is not terrible but not what we would want for our

brother. It is hard to see one in such a nice home and the other in a marginal

home.

My advise is the sooner you start looking the better. If my mother had put

the guys on a waiting list then perhaps it would not have taken almost 10

years to get them settled and might be in a better place. Nora

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Joanne,

I also have a daughter (20 yr), she has Aspergers, I need to start preparing for

her future without her father and I. If you have any suggestion please shoot

them my way. Thanks!

Dawn

jhmetoyer@... wrote: Thanks for bringing this topic up Jill. I would

also like to hear how others handle this transition and hear stories about what

their loved ones do to fill up their time and to lead a fulfilling life. Our

daughter Annie is aging out of the school system on Oct. 2 (She turns 22 on Oct.

3). She does have 2 volunteer positions that we intend to have her continue.

She is independent in these two places because there are fantastic natural

supports for her. In other situations and as far as transportation she would

not be independent. She still needs much support although she is very verbal.

We have not heard anything regarding home based waiver funding. How do you all

handle this and work full time? I am feeling at a loss.

Thanks All!

Joanne

-------------- Original message --------------

From: jillplato@...

Hello group!

My daughter, who has autism, is 17, and I have so many things to figure out

for her future. She is still nonverbal, but she can type really well. I

would say that she is moderately affected by autism.

My big questions are if your child lives away from home, where does he or

she live? Is it successful and is your child happy there? How did you find

the place? What problems have you had?

For those whose child still lives at home, but has aged out of school, what

does your child do during the day? If he or she is working, how did you find

the job, etc.

We live in a rural area downstate, but still it would help me so much to

hear from you as I begin to navigate through this new phase of our daughter's

life.

Jill

Kane, IL

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Based on what I read here at IPADD, where most of our children live is at home

with parents until the parents are so infirm that the young folks must live

somewhere else.  Last I heard, no existing housing for folks with DD were doing

waiting lists...they became 20-years long, and then it became on emergency basis

only...that is, family emergency.

My best girlfriend also lives in DuPage County, and her brother has difficulties

living and working due to mental illness.  He didn't get a housing arrangement

until his mother was in her 60's, and even then, the folks with the state of IL

tried to get my girlfriend to take him in, in spite of her 3 young kids plus a

new baby.

I'd say, don't fret about this now.  It looks to me like many parents around the

state are pushing for more housing options, and some are even banding together

to start some.  If, at 17, your daughter has you thrashing through the mess to

set  up housing, it's possible that you'll be too tired to do other things that

really should be started now.

IMHO, with a 17 year old, get ready to file for guardianship, setting up a

3rd-party special needs trust, re-do your wills to give her portion of your

estate to the trust.  All that at age 18.  Get a lawyer who has already done

those things multiple times.  You go to a regular lawyer for this, and s/he's

likely to charge you for the time spent researching all this.

Once that's done, go file for SSI with the local Social Security office.

Ask your school folks for written resources or seminars on this stuff.  Come

here and ask questions on this.

You get transition up through the last day of being 21.  Transition people

should help get your daughter linked with a job coaching agency (no cost if

she's getting SSI--see the importance?), and possibly a training job while she's

in transition.

Now's the time to start asking the school district about what their transition

program does.  Any on-the-job experiences?  Cooking and cleaning?  Work on

social skills?  Go visit for a few hours and see them in action. Let them know

what you'd most like your daughter to work on.

And now is a great time to start checking out what your local Special Recreation

Association does  with teens and 20's.  Getting to know folks she'll see again

after high school is done is a good idea.

-Gail 

From: jillplato@... <jillplato@...>

Subject: Where Do Your Older Children Live?

IPADDUnite

Date: Thursday, July 3, 2008, 11:01 PM

Hello group!

My daughter, who has autism, is 17, and I have so many things to figure out

for her future. She is still nonverbal, but she can type really well. I

would say that she is moderately affected by autism.

My big questions are if your child lives away from home, where does he or

she live? Is it successful and is your child happy there? How did you find

the place? What problems have you had?

For those whose child still lives at home, but has aged out of school, what

does your child do during the day? If he or she is working, how did you find

the job, etc.

We live in a rural area downstate, but still it would help me so much to

hear from you as I begin to navigate through this new phase of our daughter's

life.

Jill

Kane, IL

[Guest guest]

Nice summary, Gail.  My other piece of advice would be to develop relationships

with other families in your community who have the same vision and goals for

their sons and daughters who happen to have disabilities...they will be both

your support system and your potential advocacy group to push your agenda of

supports and services, including independent living for your daughter, in your

community.

In addition, if you can identify the agency who best fits with your philosophy

or priorities, it would be a great idea to develop a relationship with them,

early on...volunteer on a committee, serve on their board of directors, or do

whatever it takes to ingratiate yourself and become a valued asset to them...you

are likely to reap the benefits later, when you need the agency for supports and

services.

Ellen

Ellen Garber Bronfeld

egskb@...

847/212-3036 (cell)

Where Do Your Older Children Live?

IPADDUnite@gro ups.com

Date: Thursday, July 3, 2008, 11:01 PM

Hello group!

My daughter, who has autism, is 17, and I have so many things to figure out

for her future. She is still nonverbal, but she can type really well. I

would say that she is moderately affected by autism.

My big questions are if your child lives away from home, where does he or

she live? Is it successful and is your child happy there? How did you find

the place? What problems have you had?

For those whose child still lives at home, but has aged out of school, what

does your child do during the day? If he or she is working, how did you find

the job, etc.

We live in a rural area downstate, but still it would help me so much to

hear from you as I begin to navigate through this new phase of our daughter's

life.

Jill

Kane, IL

[Guest guest]

Lots of people have given you some good ideas about what they have

done or friends have done. Here's what we've done.

My son is 28 years old, has autism, is nonverbal but uses Amenrican

Sign language. He was in a day program for several years but he was

too high functioning in many ways and too low in others and we

pulled him out.

He has been on a waiting list for a group home for about ten years

but now we think we want to create something ourselves. Ideally, it

would include people with autism, approximately at his level.

People with autism do better with structure so I have structured his

day with the ability to be flexible. He works in the mornings--

either he does several in a group of academics tasks carried over

from his school years and/or art projects or he does work for his

business, an envelope stuffing business. With the envelope stuffing-

-he has four clients--for two or three weeks a month, he is very

busy and then there is a slow time. In November and December, he

picks up other clients and is busy the whole time. He is a

volunteer and is not paid for this because it will disrupt his SSI.

After lunch, he watches a movie or listens to music ( I am a

musician and can structure my time so I am lesson planning or

writing program notes, my other side line, while he's watching his

movies. Also, I teach several afternoons a week and his respite

worker comes in the afternoons. When he has a busy time with the

envelopes, his worker also supervises if he needs to get a job out

and didn't finish in the morning). We go for walks, visit with

friends, run a few errands or do yard work or shovel snow before

dinner. He occassionally does a special rec class but he would

rather do music or swimming only, so if it conflicts with something

else, we don't do it that session. My rehearsals are in the

evenings, so his Dad or one of his brothers will take him running

during those times. He has had health programs (migrains) lately

and we have had to be really flexible. We've FINALLY found the

correct medication for him and he is blooming again.

Marie

>

> Hello group!

>

> My daughter, who has autism, is 17, and I have so many things to

figure out

> for her future. She is still nonverbal, but she can type really

well. I

> would say that she is moderately affected by autism.

>

> My big questions are if your child lives away from home, where

does he or

> she live? Is it successful and is your child happy there? How

did you find

> the place? What problems have you had?

>

> For those whose child still lives at home, but has aged out of

school, what

> does your child do during the day? If he or she is working, how

did you find

> the job, etc.

>

> We live in a rural area downstate, but still it would help me so

much to

> hear from you as I begin to navigate through this new phase of our

daughter's

> life.

>

> Jill

> Kane, IL

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars. (http://autos.aol.com/used?

ncid=aolaut00050000000007)

>

>

>

[Guest guest]

Gail's info made me hopeful that I can find a job

coach for my son in Kane Co.

I have a question on a job coaching agency. My son is

19 and will starting his first job soon. Our school

program does not provide for job coaching in the

summer (eventhough he is in a transition school

program this summer). He recs SSI. Where do I find a

Job coach?

Thanks,

Marget

--- Ellen Bronfeld <egskb@...> wrote:

> Nice summary, Gail.  My other piece of advice would

> be to develop relationships with other families in

> your community who have the same vision and goals

> for their sons and daughters who happen to have

> disabilities...they will be both your support system

> and your potential advocacy group to push your

> agenda of supports and services, including

> independent living for your daughter, in your

> community.

> In addition, if you can identify the agency who best

> fits with your philosophy or priorities, it would be

> a great idea to develop a relationship with them,

> early on...volunteer on a committee, serve on their

> board of directors, or do whatever it takes to

> ingratiate yourself and become a valued asset to

> them...you are likely to reap the benefits later,

> when you need the agency for supports and services.

> Ellen

> Ellen Garber Bronfeld

> egskb@...

> 847/212-3036 (cell)

>

>

>

> Where Do Your Older Children

> Live?

> IPADDUnite@gro ups.com

> Date: Thursday, July 3, 2008, 11:01 PM

>

> Hello group!

>

> My daughter, who has autism, is 17, and I have so

> many things to figure out

>

> for her future. She is still nonverbal, but she can

> type really well. I

>

> would say that she is moderately affected by autism.

>

> My big questions are if your child lives away from

> home, where does he or

>

> she live? Is it successful and is your child happy

> there? How did you find

>

> the place? What problems have you had?

>

> For those whose child still lives at home, but has

> aged out of school, what

>

> does your child do during the day? If he or she is

> working, how did you find

>

> the job, etc.

>

> We live in a rural area downstate, but still it

> would help me so much to

>

> hear from you as I begin to navigate through this

> new phase of our daughter's life.

>

> Jill

>

> Kane, IL

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Hi!

I am the mother of a now 21 year old son who has Traumatic Brain

Injury due to the fact a man hit him with his truck in 1992. My son

does not have autism, down syndrome or any other classification as

most of you folks here do. We have encountered this through all his

life as he is not in any of the 'normal' classifications, he has been

grouped with many different disabilities but none of those fit him.

He is a very active, very much life oriented young man with all the

same goals as any other 21 year old man. He knows what life is

about, he likes to do things a young man does, he wants to drive

which we had him tested for and because of his unjury, he can't. He

wants a girlfriend which I pray to God he will someday find. We have

never treated him as 'different' we just dealt with it. We have

strived all our lives to mainstream him and prepare him as best we

could for life. The biggest problem I feel we have encountered is

other people and their views of 'disabled'

I read all these entries and I can't help but wonder if maybe in the

process of life, we fail to realize these young men and women are

just like every other person growing up, with the same goals. We

never know where our child, even a healthy one, will end up, where

they will live, how they will fair in the world but we work hard, do

our best, and try to prepare them best we can, sometimes we succeed,

sometimes we don't.

I was told by a 'professional' that my son does not know he

is 'disabled' which struck me at the time, but made me realize, he is

not 'disabled' but just has some situations to deal with in life that

most take for granted. It is all in how we look at it and I never

have looked at his situation like that. Sure it gets frustrating,

but you do what you have to do!

I had hopes of my son growning up, inspite of his impairment, and

leaving home, living a somewhat normal life. One day my friend said

to me " have you ever thought of the idea may be with you for

the rest of your life? " Until that point I guess I was in a denial

phase because I never considered that to be an option. But you know

what, even perfectly healthy young adults are growing up and not

leaving home these days!! So at that point I decided, ok, God,

whatever will be, will be. Even if were not injured in the

accident, he could have lived home with me all his life anyway!!!

I started making changes to our home, for his benefit, in case the

day should come that he would be the man of the house, and I have

spoken to him, his sister and many others about his having someone he

can pay to come help him live in his home, if he never has the luck

to find someone to share a life with. I do understand not everyone

is the same, some people need a different level of support, some

people are more or less capable of living independantly. I know we

are a 'special situation'. I asked him several times, if he would

like to live in one of these 'homes' and he does not, so be it.

does not want to be told by someonelse, when to do something

and how to do it. He likes to go shopping, looking through stores,

go out and party, etc, etc.

I do not treat as 'disabled' and we do everything he wants to

do, to the best of our ability. I know sometimes it is frustrating,

it is extremely difficult. For me being a single parent most of my

life I have faced many challenges that I would rather not have had to

deal with, but its like the old saying, 'what doesnt kill you, makes

you stronger!'

We need to just do the best we can, ask lots of questions!! Do lots

of research, find out as much information as we can about everything

to do with our children, young adults so we can help make good

decisions for a good foundation of knowledge for him/her.

This is part of why I love this site, it sometimes shows me how lucky

we are, and how together we really are sometimes!!!!

Kathy

> From: jillplatoaol (DOT) com <jillplatoaol (DOT) com>

> Subject: Where Do Your Older Children Live?

> IPADDUnite@gro ups.com

> Date: Thursday, July 3, 2008, 11:01 PM

>

> Hello group!

>

> My daughter, who has autism, is 17, and I have so many things to

figure out

>

> for her future. She is still nonverbal, but she can type really

well. I

>

> would say that she is moderately affected by autism.

>

> My big questions are if your child lives away from home, where does

he or

>

> she live? Is it successful and is your child happy there? How did

you find

>

> the place? What problems have you had?

>

> For those whose child still lives at home, but has aged out of

school, what

>

> does your child do during the day? If he or she is working, how did

you find

>

> the job, etc.

>

> We live in a rural area downstate, but still it would help me so

much to

>

> hear from you as I begin to navigate through this new phase of our

daughter's life.

>

> Jill

>

> Kane, IL

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Marget,

Do you recall my posts earlier in the spring about having been told that my

daughter could not receive transition services during the summer because she was

not in competitive employment? I received all kinds of good information at that

time, not the least of which was from Sue Walter at Illinois State Board of

Education, who is their Transition Specialist for the whole state. Once I

questioned the district policy, it was pretty clear that there'd been a

'misunderstanding' and that in fact services could/should continue thru the

summer if the student's IEP provided for that. I'm not sure, since it's July

now, exactly what you could do with your district, but I'd sure call someone and

have a chat about it...it may be too late for this year but maybe for next year

you can have it all in place.

Also, I was directed to my DRS office to find workplace supports for at

one point; I didn't get very far because their contention was it's my school

district's responsibility until she ages out of the transition services.

Remember that transition isn't a 'place' or a 'program' no matter what your

district may say. It's still the same set of individualized supports and

services as mandated under IDEA.

By the way, my daughter is NOT competitively employed at the moment, but she

receives supports four mornings a week from a job coach who helps support her

during a 'mall walking' club at our local mall, then transports her to a

district office where she does shredding for now. If and when her own business

(Helper Girl, Inc) takes off again and she gets more real estate clients/work,

she will have competitive employment again. Her jobs have included stuffing &

labeling envelopes (like Maries' son Russ); labeling realtor marketing

materials, stuffing cellophane bags & delivering them, etc. Her clients pay her

the prevailing wage for our area which is $10/hour. She then pays for her job

coach and transportation/gas, so she ends up in the hole overall but derives so

much pride and satisfaction from it that overall we count it as a big gain!

Also, re: what Marie alluded to with Russ doing his jobs on a volunteer basis,

because has been paying out more than her salary toward 'Impairment

Related Work Expenses' or IRWE expenses, it should not affect her Social

Security benefits.

Good luck, and thanks to the original poster who started this thread! It's a

good one.

Laurie

Where Do Your Older Children

> Live?

> IPADDUnite@gro ups.com

> Date: Thursday, July 3, 2008, 11:01 PM

>

> Hello group!

>

> My daughter, who has autism, is 17, and I have so

> many things to figure out

>

> for her future. She is still nonverbal, but she can

> type really well. I

>

> would say that she is moderately affected by autism.

>

> My big questions are if your child lives away from

> home, where does he or

>

> she live? Is it successful and is your child happy

> there? How did you find

>

> the place? What problems have you had?

>

> For those whose child still lives at home, but has

> aged out of school, what

>

> does your child do during the day? If he or she is

> working, how did you find

>

> the job, etc.

>

> We live in a rural area downstate, but still it

> would help me so much to

>

> hear from you as I begin to navigate through this

> new phase of our daughter's life.

>

> Jill

>

> Kane, IL

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Laurie is very creative with 's employment--good for you! I am

on a zillion autism lists and there was a posting in the last few

days about a young man in Orange County, CA with a shredding

business--a microenterprise. I think Harry Sr. has spoken to me

about a young man in IN doing something similar. I'll get the

Orange County item cut and pasted, pronto. This has been a good

posting thread!

Marie

> > From: jillplatoaol (DOT) com <jillplatoaol (DOT) com>

> > Subject: Where Do Your Older Children

> > Live?

> > IPADDUnite@gro ups.com

> > Date: Thursday, July 3, 2008, 11:01 PM

> >

> > Hello group!

> >

> > My daughter, who has autism, is 17, and I have so

> > many things to figure out

> >

> > for her future. She is still nonverbal, but she can

> > type really well. I

> >

> > would say that she is moderately affected by autism.

> >

> > My big questions are if your child lives away from

> > home, where does he or

> >

> > she live? Is it successful and is your child happy

> > there? How did you find

> >

> > the place? What problems have you had?

> >

> > For those whose child still lives at home, but has

> > aged out of school, what

> >

> > does your child do during the day? If he or she is

> > working, how did you find

> >

> > the job, etc.

> >

> > We live in a rural area downstate, but still it

> > would help me so much to

> >

> > hear from you as I begin to navigate through this

> > new phase of our daughter's life.

> >

> > Jill

> >

> > Kane, IL

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

>

>

[Guest guest]

My impression (and all I know is DuPage) is that if your son receives SSI then

once he's done with transition, if you line up a  job coach agency, Div of Rehab

Services pays them.

IF he's in transition, and IF that job pays a wage, and IF the employer wants

him to come work for the summer, my understanding was that the school dist was

obliged to support the job--albeit perhaps less often than during the school

year--and to provide transportation, if needed.

That's what we had.

If the employer doesn't pay any wage (and your son is paid with gift cards

through Div of Rehab Services--you might have heard this called the STEP

program), then you are out of luck for the summer.

Corrections on this welcomed.

-Gail 

> From: jillplatoaol (DOT) com <jillplatoaol (DOT) com>

> Subject: Where Do Your Older Children

> Live?

> IPADDUnite@gro ups.com

> Date: Thursday, July 3, 2008, 11:01 PM

>

> Hello group!

>

> My daughter, who has autism, is 17, and I have so

> many things to figure out

>

> for her future. She is still nonverbal, but she can

> type really well. I

>

> would say that she is moderately affected by autism.

>

> My big questions are if your child lives away from

> home, where does he or

>

> she live? Is it successful and is your child happy

> there? How did you find

>

> the place? What problems have you had?

>

> For those whose child still lives at home, but has

> aged out of school, what

>

> does your child do during the day? If he or she is

> working, how did you find

>

> the job, etc.

>

> We live in a rural area downstate, but still it

> would help me so much to

>

> hear from you as I begin to navigate through this

> new phase of our daughter's life.

>

> Jill

>

> Kane, IL

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I wrote the group and I don't understand your post. Nora

In a message dated 7/4/2008 12:58:37 P.M. Central Daylight Time,

ckdollface911@... writes:

please do not write me again

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Just a very brief P.S. to my earlier post --- and, again, not saying that what

we feel is

right/best for us is the direction for ALL.

In my value system, I feel that probably the best thing about having Luke live

with us is that

EVERY day he's told (and shown) how much he's loved and that he's a great guy!

He can't

really respond to that, but we know he understands.

Ron

[Guest guest]

Ron I agree 100 %. My only thing is what happens when we are gone? I do not

want pushed into some place that he will HATE! I would rather know he is

in a place he likes and knows others.

Shirley

ron_n_luke <roncress@...> wrote:

Just a very brief P.S. to my earlier post --- and, again, not saying

that what we feel is

right/best for us is the direction for ALL.

In my value system, I feel that probably the best thing about having Luke live

with us is that

EVERY day he's told (and shown) how much he's loved and that he's a great guy!

He can't

really respond to that, but we know he understands.

Ron

[Guest guest]

My brother stayed with our parents until my father's death, at which point

my mother was already living in a nursing home. My brother moved to a

retirement home where he has been relatively happy. He is accustomed to

living and socializing with older people like our parents and their

friends. He speaks loudly because of his condition, and the other people at

the retirement home tend to have trouble hearing because of their (aging)

condition.

He has had a succession of girlfriends there, and has people who care about

him. My goal for him was to love, be loved, and to somehow make the world a

better place. He has accomplished all three. He has Traumatic Brain

Injury which results in his looking like he has cerebral palsy, but acting

as though he has autism.

Jean

On Sun, Jul 6, 2008 at 9:21 AM, Shirley Linden <slpanda2@...>

wrote:

> Ron I agree 100 %. My only thing is what happens when we are gone? I do

> not want pushed into some place that he will HATE! I would rather know

> he is in a place he likes and knows others.

> Shirley

>

>

> ron_n_luke <roncress@... <roncress%40earthlink.net>> wrote:

> Just a very brief P.S. to my earlier post --- and, again, not saying that

> what we feel is

> right/best for us is the direction for ALL.

>

> In my value system, I feel that probably the best thing about having Luke

> live with us is that

> EVERY day he's told (and shown) how much he's loved and that he's a great

> guy! He can't

> really respond to that, but we know he understands.

>

> Ron

>

>

[Guest guest]

Well said, Ron! Back when I was just getting started understanding the 'adult

services world' I stumbled onto a site developed by Dave Pitonyak called

www.dimagine.com. He writes that in supporting a person with difficult

behaviors, it's not 'coverage' that's so essential to a person's well-being, but

'relationships'. How true for all of us! Those daily affirmations of love

(which I'm sure go both ways between you and Luke) can make all the difference

between merely existing and living a life fully.

My daily affirmations of love from my daughter generally take the form of what I

call 'pointy head' hugs, whereby she kind of leans into me and ever so gently

touches my head with some part of her head, then backs away. I know it's really

her version of a hug.

L.

Re: Where Do Your Older Children Live?

Just a very brief P.S. to my earlier post --- and, again, not saying that what

we feel is

right/best for us is the direction for ALL.

In my value system, I feel that probably the best thing about having Luke live

with us is that

EVERY day he's told (and shown) how much he's loved and that he's a great guy!

He can't

really respond to that, but we know he understands.

Ron

[Guest guest]

This has been the best series of posts (including those newer than

the one I chose to respond to for continuity). Gail's summmary, with

each unique addition by others, is a great start for each of us

working on transition. But I'm especially encouraged to find that

the unusual, even strange ideas I consider, are not unique and some

are actually working. I'd like to see posts from everyone who worked

out something unusual. We all need out-of-box ideas.

For reference, my son Adam is 19, low/moderate autistic, with the

same kind of low/high functioning paradoxes that I read about in

these posts every week. We are still using the school district voc'

transition, but we could opt out if one of our other ideas develops.

We are currently looking at purchasing a delivery route and hiring a

physically, but not mentally disabled driver so Adam can do the

physical labor. We are also considering starting a discounted-fee

lawn service (he mows very well with direction) with a mentally able

partner. To start, I may transition him into this myself, as we

already have done volunteer mowing and snow-shoveling for elderly

though the church.

For recreation/socialization, we again are using the voluteering

approach to start. We are avid bikers of the nature trails 10+

months/year and we're making a adult-suitable bike trailer for a

young adult with CP that we met. We'd like to use a recumbent bike

as the basic component so that the rider can assist with pedaling as

much or as little as they are able (for exercise, therapy, and/or

weight loss). If anyone in the north/northwest suburbs is interested

for their 16 - 30 year-old, or if there's a bike mechanic in the

group that could assist us, we'll be watching for more posts.

-- In IPADDUnite , Ellen Bronfeld <egskb@...> wrote:

>

> Nice summary, Gail.  My other piece of advice would be to develop

relationships with other families in your community who have the same

[Guest guest]

Smilin' here. Luke gives what we call " Power Hugs " - the kind you have to duck

under to

get out of. Love the term " pointy head' hugs. " Yes, the love flows both ways

even without

words.

Sure it will be tough when .... well ... when .... you know. But, for now, we

feel that giving

(and receiving) that love everyday is what's most important.

Ron

>

> Well said, Ron! Back when I was just getting started understanding the 'adult

services

world' I stumbled onto a site developed by Dave Pitonyak called

www.dimagine.com. He

writes that in supporting a person with difficult behaviors, it's not 'coverage'

that's so

essential to a person's well-being, but 'relationships'. How true for all of

us! Those daily

affirmations of love (which I'm sure go both ways between you and Luke) can make

all the

difference between merely existing and living a life fully.

>

> My daily affirmations of love from my daughter generally take the form of what

I call

'pointy head' hugs, whereby she kind of leans into me and ever so gently touches

my head

with some part of her head, then backs away. I know it's really her version of

a hug.

>

> L.

>

>

> Re: Where Do Your Older Children Live?

>

>

> Just a very brief P.S. to my earlier post --- and, again, not saying that

what we feel is

> right/best for us is the direction for ALL.

>

> In my value system, I feel that probably the best thing about having Luke

live with us is

that

> EVERY day he's told (and shown) how much he's loved and that he's a great

guy! He

can't

> really respond to that, but we know he understands.

>

> Ron

>

>

>

>

>

>

[Guest guest]

Adam is 9 months from the last day of transition with his school. We have

made every effort to engage the transition school team to create what he

will need when they are gone. A parent whose child had exited transition

coached me by breaking down life's domains . work/ volunteer/ recreation..

Here in DuPage county recreation and social interaction with WDSRA,

SEASPAR, Tomahawk hockey, as well as small group gatherings was not

something we felt the school needed to address. School had the gate way to

the community for employment and volubnteer. We also moved from our home

south of 75th street in Naperville , 75th street we felt too dangerous for

Adam to cross. Downtown Naperville has a lot of commercial activity . Our

voc director was able to find Adam two part time jobs, and we used

transition to help him learn how to walk to work etc, stop at the barber

shop for a haircut, walk to the library and use it. The school district

co-ops with a few agencies downtown,and Adam volunteers and again is able

to walk home with a great deal of structure and safety instruction.. He had

a great capacity for walking since he had walked to grade school and

middle school. We knew for sure he could walk a mile, when we looked for a

house, we were bound by one mile from the center of downtownas well as

walking the route ourselves to be aware of hidden dangers. such as the

railroad crossing at one spot in town. Our selection of real estate was

extremely limited based on what we knew Adam could do and what we learned

were safe routes. For example one block he has to walk is Metra parking,

so that sidewalk is always cleared of snow very quickly. The rest of

downtown Naperville is part of a service area the city clears. Adam has

also learned how to use the downtown Y for or working out. Again the

transition team played a part in that. Currently he works 4 days a weekin

town, one day at a greenhouse, volunteer at a church that he has to use

para transit, Ride DuPage. We are working on one more volunteer opportunity

at a school where we know the principal. He basically has two day parts,

Tuesday and Thursday mornings free. I am told that is o k! We didnt ask

transition to teach him house work or laundry. As a family, we pretty

much insisted all three of our sons do their own laundry. Adam is good

with a vacuum cleaner. I am imagining and hoping when transition is done

next April,his first day of adult life wont look very different from his

last day of transition. We have a unique situation since all three of our

sons had to transition in 1995 when I lost my sight, and the ability to

drive. Because of that Adam was forced to develop skills that he could use

now regarding rides...knowing when the ride is here, to be ready, knowing a

safe ride having a code for a surprise new ride. It was also in 1995 that I

learned without a doubt there is very little for people with DD after

school. So we have been getting ready for 22nd birthday since he was

7.(when I lost my sight). This set up works very well now . The other

big hope is he wont get fired from his jobs. I know we all hoep that for

ourselves and our children with disabilities,but right now his life is

full of quality opportunities, and I am very aware his life is also much

like a house of cards. One thing goes and we are back to the drawing board.

Sorry this is sooo long. I am pretty passionate about people with

disabilities and quality of life. Mine your community, call on friends,

call on businesses you do business with.. work with other families to get

things to happen.

Good luck to all! Cindi

[Guest guest]

For the biking goal, you may want to consider contacting Creative Mobility which

is associated with The Bike Rack in St. . http://thebikerack.com

The owner is Hal. He may have ideas, suggestions as well as a network of people

that may assist you in reaching your goals.

Donna

-------------- Original message --------------

From: " jbergman51 " <jbergman51@...>

This has been the best series of posts (including those newer than

the one I chose to respond to for continuity). Gail's summmary, with

each unique addition by others, is a great start for each of us

working on transition. But I'm especially encouraged to find that

the unusual, even strange ideas I consider, are not unique and some

are actually working. I'd like to see posts from everyone who worked

out something unusual. We all need out-of-box ideas.

For reference, my son Adam is 19, low/moderate autistic, with the

same kind of low/high functioning paradoxes that I read about in

these posts every week. We are still using the school district voc'

transition, but we could opt out if one of our other ideas develops.

We are currently looking at purchasing a delivery route and hiring a

physically, but not mentally disabled driver so Adam can do the

physical labor. We are also considering starting a discounted-fee

lawn service (he mows very well with direction) with a mentally able

partner. To start, I may transition him into this myself, as we

already have done volunteer mowing and snow-shoveling for elderly

though the church.

For recreation/socialization, we again are using the voluteering

approach to start. We are avid bikers of the nature trails 10+

months/year and we're making a adult-suitable bike trailer for a

young adult with CP that we met. We'd like to use a recumbent bike

as the basic component so that the rider can assist with pedaling as

much or as little as they are able (for exercise, therapy, and/or

weight loss). If anyone in the north/northwest suburbs is interested

for their 16 - 30 year-old, or if there's a bike mechanic in the

group that could assist us, we'll be watching for more posts.

-- In IPADDUnite , Ellen Bronfeld <egskb@...> wrote:

>

> Nice summary, Gail. My other piece of advice would be to develop

relationships with other families in your community who have the same

[Guest guest]

,

Good for you, too! I think some of us need to think outside the conventional

box, esp. if our kiddos are not 'day program' material OR if we don't have the

funding available to fund the day program or whatever other options may be

available in our communities. Here in Naperville, there ARE some nice options

if your loved one can successfully function, contentedly, with staffing ratios

of anywhere from 5:1 to 25:1 (or, if you're Ron Cress - smile - and have managed

to get a 1:1 like Luke has at his day program!). Otherwise, it's hard to find

an agency that's 'willing' to take on your person, or who will retain your

person if behaviors/anxiety etc rear their ugly heads.

So, I love your idea of purchasing a delivery route! That was one of the

successful business ventures discussed at a Microenterprise Conference I

attended last year. Service businesses are definitely the way to go, since you

can customize them to your person AND to the service demands of your particular

community.

Keep those ideas flowing, guys, and maybe someday we'll have a whole list of

small businesses to share with the group. Then I'd expect us all to patronize

one another's business ventures, of course!

Let's hope those darn gas prices come down SOON!

L.

Re: Where Do Your Older Children Live?

This has been the best series of posts (including those newer than

the one I chose to respond to for continuity). Gail's summmary, with

each unique addition by others, is a great start for each of us

working on transition. But I'm especially encouraged to find that

the unusual, even strange ideas I consider, are not unique and some

are actually working. I'd like to see posts from everyone who worked

out something unusual. We all need out-of-box ideas.

For reference, my son Adam is 19, low/moderate autistic, with the

same kind of low/high functioning paradoxes that I read about in

these posts every week. We are still using the school district voc'

transition, but we could opt out if one of our other ideas develops.

We are currently looking at purchasing a delivery route and hiring a

physically, but not mentally disabled driver so Adam can do the

physical labor. We are also considering starting a discounted-fee

lawn service (he mows very well with direction) with a mentally able

partner. To start, I may transition him into this myself, as we

already have done volunteer mowing and snow-shoveling for elderly

though the church.

For recreation/socialization, we again are using the voluteering

approach to start. We are avid bikers of the nature trails 10+

months/year and we're making a adult-suitable bike trailer for a

young adult with CP that we met. We'd like to use a recumbent bike

as the basic component so that the rider can assist with pedaling as

much or as little as they are able (for exercise, therapy, and/or

weight loss). If anyone in the north/northwest suburbs is interested

for their 16 - 30 year-old, or if there's a bike mechanic in the

group that could assist us, we'll be watching for more posts.

-- In IPADDUnite , Ellen Bronfeld <egskb@...> wrote:

>

> Nice summary, Gail. My other piece of advice would be to develop

relationships with other families in your community who have the same

[Guest guest]

Even while I am on vacation I am checking email and I am so excited to read

about these micro-enterprise/ business ventures.  I am hoping to develop

something for Noah, quite possibly a pick up and delivery laundry service with

target clients at a local university, and possibly elderly, disabled or busy

families in the community.  Some other friends are buying a small food kiosk in

a park district health club that we may also get involved in...so...as I have

more specific information, I will be sharing our stories.

I like Laurie's idea of eventually having a list of successful businesses owned

and run by our family members who have disabilities, which will serve as models

for others...

Ellen

 

Ellen Garber Bronfeld

egskb@...

847/212-3036 (cell)

Re: Where Do Your Older Children Live?

This has been the best series of posts (including those newer than

the one I chose to respond to for continuity). Gail's summmary, with

each unique addition by others, is a great start for each of us

working on transition. But I'm especially encouraged to find that

the unusual, even strange ideas I consider, are not unique and some

are actually working. I'd like to see posts from everyone who worked

out something unusual. We all need out-of-box ideas.

For reference, my son Adam is 19, low/moderate autistic, with the

same kind of low/high functioning paradoxes that I read about in

these posts every week. We are still using the school district voc'

transition, but we could opt out if one of our other ideas develops.

We are currently looking at purchasing a delivery route and hiring a

physically, but not mentally disabled driver so Adam can do the

physical labor. We are also considering starting a discounted-fee

lawn service (he mows very well with direction) with a mentally able

partner. To start, I may transition him into this myself, as we

already have done volunteer mowing and snow-shoveling for elderly

though the church.

For recreation/socializ ation, we again are using the voluteering

approach to start. We are avid bikers of the nature trails 10+

months/year and we're making a adult-suitable bike trailer for a

young adult with CP that we met. We'd like to use a recumbent bike

as the basic component so that the rider can assist with pedaling as

much or as little as they are able (for exercise, therapy, and/or

weight loss). If anyone in the north/northwest suburbs is interested

for their 16 - 30 year-old, or if there's a bike mechanic in the

group that could assist us, we'll be watching for more posts.

-- In IPADDUnite@gro ups.com, Ellen Bronfeld <egskb@...> wrote:

>

> Nice summary, Gail. My other piece of advice would be to develop

relationships with other families in your community who have the same