Re: Residential

September 3, 2007

Hello Ellen, and others on the list!

I'm new to the group and have been reading the posts the past few weeks. It sounds like you are all wise and knowledgeable about the system here in Illinois. I returned to near west suburban Chicago 6 months ago with my adult son after living in England the past 8 years, so I am familiar with both how things are done in the UK and learning fast about services(?) in Illinois. I have been active in the autism community in the U.S. as well as forming a group in England in 2001. Perhaps I have a unique outlook, but I agree wholeheartedly with your opinion, Ellen.

Our sons and daughters will need to live away from us at some point, and I believe it serves them better to manage the transition while we are still able to support them through the change and the trauma this may cause. There are creative solutions to living arrangements beyond group homes and living with the family. I am pushing 60 and intend to create a living situation for my 24-year old son when he is best able to tolerate a transition to living away from me. I am sole carer for my son, who also suffers a diagnosis of schizophrenia, and he requires 24-hour supervision at the moment. While most of you are probably families who can help each other out, we are all vulnerable to illness and crises that create emergencies. That is not the time for our children to have to adapt to change.

There are consultants who can assist each family develop a situation (based on individual needs and strengths) that involve work, support staff (as needed), etc. A mother of a severely autistic son I met at Autism One Conference 2 years ago (Jackie Marquette) just finished her PhD thesis on families who created innovative solutions for their children to live semi-independent lives and are flourishing. Her own son has grown in many skills when she moved out of their home and a companion/carer moved in to assist with cooking, cleaning, etc. He also works at the same place as her son and drives him to other activities he wasn't participating in before.

I believe we know our children best and can create environments for them that will empower them to live as full a life as possible. That could very well be joining with other families to buy cheap housing and acquire support staff, where families could be nearby to create a community. I don't think you are rambling at all, Ellen, you are right on target!!

Withers

September 3, 2007

welcome to Illinois and IPADD. There are many puzzle pieces and it is our

work to put the pieces together the way we and our loved one with a dis.

wants it .. not the state or agency.It is all about affiliation and dreaming

and putting all the parts together I would love to read the research . you

talk about. Maybe there is one less wheel we have to design. Cindi

September 3, 2007

I am intrigued by your reference to this woman, Jackie Marquette. Do you have contact information for her, Pat?

And...welcome back to the USA!

Ellen

Ellen Garber Bronfeldegskb@...

Re: Residential

Hello Ellen, and others on the list!

I'm new to the group and have been reading the posts the past few weeks. It sounds like you are all wise and knowledgeable about the system here in Illinois. I returned to near west suburban Chicago 6 months ago with my adult son after living in England the past 8 years, so I am familiar with both how things are done in the UK and learning fast about services(?) in Illinois. I have been active in the autism community in the U.S. as well as forming a group in England in 2001. Perhaps I have a unique outlook, but I agree wholeheartedly with your opinion, Ellen.

Our sons and daughters will need to live away from us at some point, and I believe it serves them better to manage the transition while we are still able to support them through the change and the trauma this may cause. There are creative solutions to living arrangements beyond group homes and living with the family. I am pushing 60 and intend to create a living situation for my 24-year old son when he is best able to tolerate a transition to living away from me. I am sole carer for my son, who also suffers a diagnosis of schizophrenia, and he requires 24-hour supervision at the moment. While most of you are probably families who can help each other out, we are all vulnerable to illness and crises that create emergencies. That is not the time for our children to have to adapt to change.

There are consultants who can assist each family develop a situation (based on individual needs and strengths) that involve work, support staff (as needed), etc. A mother of a severely autistic son I met at Autism One Conference 2 years ago (Jackie Marquette) just finished her PhD thesis on families who created innovative solutions for their children to live semi-independent lives and are flourishing. Her own son has grown in many skills when she moved out of their home and a companion/carer moved in to assist with cooking, cleaning, etc. He also works at the same place as her son and drives him to other activities he wasn't participating in before.

I believe we know our children best and can create environments for them that will empower them to live as full a life as possible. That could very well be joining with other families to buy cheap housing and acquire support staff, where families could be nearby to create a community. I don't think you are rambling at all, Ellen, you are right on target!!

Withers

September 3, 2007

I'd be willing to look into this if someone knows of a town. Let me know if you find anything like that. I do know that after the way my son handled the changes in our life due to the divorce it would be much better for me to get him in a independent life time living arrangement while I'm still able to help him with the transition. I would love to have him living in a house with 3 other guys and in a community where he can have both social programs and work opportunities.

--mar

-------------- Original message -------------- From: Ellen Kelley <elendale@...>

I worry about what will happen to my daughter when I and my husband are no longer able to take care of her.I also wonder how difficult it is for our children to get older with their parents and then have their parents either die or become too old to take care of them. It seems like it would be much easier on the children to move out/on while they're still younger. I had a disabled uncle who was taken out of his home when his mother (my grandmother) became too old to take care of him.By then he was about 50 and the change/trauma of all of a sudden living without his mother was too much for him and he died, essentially of a broken heart. This is kind of extreme, and I don't mean to sound morbid, but it is something that happened that I experienced.I was thinking about the smaller towns that have homes that are built already and are for sale at very reasonable prices. I know that there isn't new funding for residential and I w

as thinking that maybe a town not too far from metropolitan Chicago that had various homes for sale at these reasonable prices might be affordable, some of us parents could take out equity loans, etc. and the expense of living might be paid for with the social security? There would be issues of medical attention and paying people to help with the day to day living to whatever extent was needed...always lots of details to work out, I may be rambling, but I was thinking this may be an option, a community, some of us may be ready to retire and a small town might be acceptable? There could be community centers, possible working situations such as gardening/farming/tending animals, etc. Smaller towns with the closer knit community knowing what's going on with people, without the dangers of heavy traffic? Any thoughts? Am I grabbing at straws?Ellen K.

September 3, 2007

Cindi,

I'm not sure we all need to consider relocating to small towns. I believe community can be created in our own towns, with our own neighbors and familiar surroundings, adapting present routines (depending on individual strengths and weaknesses of our child) to living arrangements that accommodate our needs. For example, my son was placed in a National Autistic Society residence in England that housed 5 other Asperger Syndrome lads (with challenging behavior). The authorities felt a low arousal environment with trained staff would be beneficial for him. My son self-isolated in his room and became so aggressive that the staff could not tolerate the behavior after a year (of course, the medications contributed greatly to his deterioration, too). We learned that my son does not like living with other guys with disabilities, so an autism specialist suggested an individual service (his own place) with 2 support workers 24/7. This had proven to be very successful with other clients, and we were funded by the National Health Service. However, the responsible psychiatrist decided my son's behavior required institutionalization and detained him in hospital another 2 1/2 years. I don't think my son wants to live with others, so I need to think of bringing in someone that can support him here in the home. We just bought a cheap home that has a vacant property next door, with the potential of buying it and doing it up for either another individual and/or support staff nearby. The vacant house is a wreck and needs a good rehab (or bulldozer), but at $100,000, you can see the potential of creating 2 connected properties for mutual support. Each individual will be different, so it is up to us to creatively think of ways to meet those desires and needs.

Perhaps Jackie Marquette could be a guest expert for the group. She is eager to share her ideas as she begins her new consultancy and does travel to give workshops (she lives in Kentucky). Her own personal story with her son Trent is truly inspirational -- he became a gifted artist after she moved out of the home and now travels with her to autism conferences and art shows. Though he is non-verbal, he has a fantastic smile, and loves English chocolate!! If anyone would like her contact details, I could post those as well. I believe she also does phone consultations.

W.

September 3, 2007

For those of us who live in Chicgo chicago or nearby suburbs we may assume

the smaller towns in Il are more closely knit safer, more embracing. So

for me this begs the question, should we all start looking at real estate

in Woodstock, Dwight, , Utica, etc. Are the smaller towns in Il more

welcoming? Does a small town inherently have the capacity to " build

community " around people with disabilities. For instance are the Lions

Clubs willing to have my son as a member so he can be part of the community,

the Temple in the small town, if there is a Temple in a small town good to

go with a young man or woman with a dis in the congregation? Are there jobs

and rec. ops in Il small towns? I am seriously asking IPADD members from

Il. small towns to consider ansering. We may all be packing up and moving

to downstate..

Cindi

September 4, 2007

Here in Harvard we have a Pioneer Center group home walking distance to town. At first there was opposition to the home. The neighbors soon found out what good neighbors they were. Many of the adults living there work as greeters at our WalMart. We have lots of farms, a great library, pool, etc, so I'm sure it's a good fit. We do have a bus service (dial-a-ride) available too. ~PattCindi Swanson <cbswanson@...> wrote: For those of us who live in Chicgo chicago or nearby suburbs we may assume the smaller towns in Il are more closely knit safer,

more embracing. So for me this begs the question, should we all start looking at real estate in Woodstock, Dwight, , Utica, etc. Are the smaller towns in Il more welcoming? Does a small town inherently have the capacity to "build community" around people with disabilities. For instance are the Lions Clubs willing to have my son as a member so he can be part of the community, the Temple in the small town, if there is a Temple in a small town good to go with a young man or woman with a dis in the congregation? Are there jobs and rec. ops in Il small towns? I am seriously asking IPADD members from Il. small towns to consider ansering. We may all be packing up and moving to downstate.. Cindi

September 4, 2007

I am impressed that England funds individuals to live alone with TWO STAFF if that is what is needed...unfortunate that they also choose to institutionalize individuals for behavior!!! Also, no big surprise that your son did not do well with five other individuals with challenging behaviors in a home.

Illinois has a funding methodology and mindset that does not allow for individuals to get what they need...

Too bad that most systems fail our children in one way or another!

Please either post information for Ms. Marquette or email me offline so that we can arrange to speak with her about being one of our Guest Experts.

Thanks.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Residential

Cindi,

I'm not sure we all need to consider relocating to small towns. I believe community can be created in our own towns, with our own neighbors and familiar surroundings, adapting present routines (depending on individual strengths and weaknesses of our child) to living arrangements that accommodate our needs. For example, my son was placed in a National Autistic Society residence in England that housed 5 other Asperger Syndrome lads (with challenging behavior). The authorities felt a low arousal environment with trained staff would be beneficial for him. My son self-isolated in his room and became so aggressive that the staff could not tolerate the behavior after a year (of course, the medications contributed greatly to his deterioration, too). We learned that my son does not like living with other guys with disabilities, so an autism specialist suggested an individual service (his own place) with 2 support workers 24/7. This had proven to be very successful with other clients, and we were funded by the National Health Service. However, the responsible psychiatrist decided my son's behavior required institutionalization and detained him in hospital another 2 1/2 years. I don't think my son wants to live with others, so I need to think of bringing in someone that can support him here in the home. We just bought a cheap home that has a vacant property next door, with the potential of buying it and doing it up for either another individual and/or support staff nearby. The vacant house is a wreck and needs a good rehab (or bulldozer), but at $100,000, you can see the potential of creating 2 connected properties for mutual support. Each individual will be different, so it is up to us to creatively think of ways to meet those desires and needs.

Perhaps Jackie Marquette could be a guest expert for the group. She is eager to share her ideas as she begins her new consultancy and does travel to give workshops (she lives in Kentucky). Her own personal story with her son Trent is truly inspirational -- he became a gifted artist after she moved out of the home and now travels with her to autism conferences and art shows. Though he is non-verbal, he has a fantastic smile, and loves English chocolate!! If anyone would like her contact details, I could post those as well. I believe she also does phone consultations.

W.

September 4, 2007

Jackie Marquette, Ph.D, can be contacted at Jackie@.... Her website is www.themarquettegroup.com where you can learn about her Walking the Path Seminars and her consultant services. (Also check out her son Trent's artwork!)

August 1, 2011

No - that is a problem:( Maddie's is always on her knees, hands/wrist area where she is hitting the walls and hitting the ground. Plus they always call every time there is an incident with her. I feel so bad - I don't think she can control her aggression and rages but when she is done she remembers everything because she apologizes constantly. Plus she will even tell me she hits her staff and she is so sorry. But I can go see her anytime - they do ask that I let them know we are coming because they do outings and they will keep her back if they know we are coming. I just wish call the homes could be run properly. It is so hard to be a parent and we want to make sure our kids are

safe.RhondaFrom: camper356872003 <camper3568@...>autism Sent: Saturday, July 30, 2011 11:57 PMSubject: Re: RESIDENTIAL

Yes, first they said he had to get used to the new environment. However I did not like the fact that they said a teacher and put nail marks into his arms, that in fact left a scar today. He finally had bruises 3 fifty cent size on the lower abdomen. When I asked a man that worked there he said why are you asking me, you act like I did it then slammed the door on us. Zack would come home during a visit and get down on his hands and knees and cover his head when my husband walked by, something he had NEVER done before. They could not prove who did it so I guess they got away with it. The nurse at the hospital spread her hands wide and compared it to the bruises on his stomach. She said look a large handprint. When we took him to the therapeutic group home to take a tour. There were 2 men that resembled this guy at the school. He screamed in terror until we got out.

>

> Did they have a reason why he had bruises?Ã‚ I know Maddie has some, but she is SO aggressive and hurts herself - she had a lot here while she lived with us:(Ã‚ But the one time she threw herself down the stairs at school - the aid tried to grab her and ended up falling too.Ã‚ Maddie walked away with a few bruises but the aid broke her arm:(Ã‚ I do know it is hard to get 100 percent compliance - it does scare me know we have to rely on other people to help us with her.Ã‚ I do know the aids we have with her now I do feel comfortable with - you can tell they love her and she adores them which makes me feel good.Ã‚ But it did take us 9 months to get that staff:)Ã‚ I know my husband works in a group home with a young man and he says there are times he will tell the other staff if you really don't want to be here go get another job.Ã‚ I know the young man he deals with always tells me is his favorite

but I think it helps him that we have an autistic

> daughter:)

>

> >________________________________

> >From: camper356872003 <camper3568@...>

> >autism

> >Sent: Saturday, July 30, 2011 7:28 PM

> >Subject: RESIDENTIAL

> >

> >Ã‚

> >Hi, I wonder if all residential and group homes aren't negligent in some way. I have had experience putting my grandson in one school which was residential, he had bruises all over him. I took him out. I have checked into a couple of therapeutic group homes and found their houses to be quite negligent in safety. The staff they hire, could be anybody, and not everybody loves an autistic nonverbal child, which makes them perfect targets for abuse. Any thoughts on this?

> >

>

August 1, 2011

I respect you all for placing your children in rtc. I struggle with it myself,

as a single mom. Today I'm at my wits end- but not because of my guy with

autism. But because of the so called typical 12 year old sibling. She gets out

of control when he is and wants to bully him. So, then I'm defending him against

her instead of showing him the proper way to act. I get it's tough on her. But,

I wish shed just go to her room instead of responding so damn violently.

My dream is to have a loving home. And to someday bring a man into our home.

Yeah. Well, that's the dream.

On Sun Jul 31st, 2011 9:17 PM EDT Rhonda Irvin wrote:

>No - that is a problem:( Maddie's is always on her knees, hands/wrist area

where she is hitting the walls and hitting the ground. Plus they always call

every time there is an incident with her. I feel so bad - I don't think she can

control her aggression and rages but when she is done she remembers everything

because she apologizes constantly. Plus she will even tell me she hits her

staff and she is so sorry. But I can go see her anytime - they do ask that I

let them know we are coming because they do outings and they will keep her back

if they know we are coming.

>

>I just wish call the homes could be run properly. It is so hard to be a parent

and we want to make sure our kids are safe.

>Rhonda

>

>>________________________________

>>From: camper356872003 <camper3568@...>

>>autism

>>Sent: Saturday, July 30, 2011 11:57 PM

>>Subject: Re: RESIDENTIAL

>>

>>Yes, first they said he had to get used to the new environment. However I did

not like the fact that they said a teacher and put nail marks into his arms,

that in fact left a scar today. He finally had bruises 3 fifty cent size on the

lower abdomen. When I asked a man that worked there he said why are you asking

me, you act like I did it then slammed the door on us. Zack would come home

during a visit and get down on his hands and knees and cover his head when my

husband walked by, something he had NEVER done before. They could not prove who

did it so I guess they got away with it. The nurse at the hospital spread her

hands wide and compared it to the bruises on his stomach. She said look a large

handprint. When we took him to the therapeutic group home to take a tour. There

were 2 men that resembled this guy at the school. He screamed in terror until we

got out.

>>

>>>

>>> Did they have a reason why he had bruises?Â I know Maddie has some, but she

is SO aggressive and hurts herself - she had a lot here while she lived with

us:(Â But the one time she threw herself down the stairs at school - the aid

tried to grab her and ended up falling too.Â Maddie walked away with a few

bruises but the aid broke her arm:(Â I do know it is hard to get 100 percent

compliance - it does scare me know we have to rely on other people to help us

with her.Â I do know the aids we have with her now I do feel comfortable with -

you can tell they love her and she adores them which makes me feel good.Â But

it did take us 9 months to get that staff:)Â I know my husband works in a group

home with a young man and he says there are times he will tell the other staff

if you really don't want to be here go get another job.Â I know the young man

he deals with always tells me is his favorite but I think it helps him that

we

> have an autistic

>>> daughter:)

>>>

>>> >________________________________

>>> >From: camper356872003 <camper3568@...>

>>> >autism

>>> >Sent: Saturday, July 30, 2011 7:28 PM

>>> >Subject: RESIDENTIAL

>>> >

>>> >Â

>>> >Hi, I wonder if all residential and group homes aren't negligent in some

way. I have had experience putting my grandson in one school which was

residential, he had bruises all over him. I took him out. I have checked into a

couple of therapeutic group homes and found their houses to be quite negligent

in safety. The staff they hire, could be anybody, and not everybody loves an

autistic nonverbal child, which makes them perfect targets for abuse. Any

thoughts on this?

>>> >

>>>

>>

August 1, 2011