Dream

[Guest guest]

This sounds like a great plan, Pam...

We live in the northern suburbs and have a group called Best Futures, consisting of 20 like-minded families with children with developmental disabilities ranging in age from 14-33, though the majority are older teens.

Many have homes they love and family in the area and jobs that keep them in the northern suburbs, so I am doubtful that this group would move en masse. We often talk about a similar plan. There must be at least 10 families if not more in your geography who would be interested in working with you...

Indian Head Park sounds lovely! You might want to consider starting to investigate if that community has a Disabilities Committee or Affordable Housing Committee and if not, maybe you can get something going there that will create the infrastructure and resources to develop your plan.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Dream

Hi -

As many of you might recall, I have been exploring the issue of residential living as it applies to my son Josh (18) and our family. I don't think the answer is starting from scratch. Here's my thinking right now.

We found an existing community in Indian Head Park, Acacia. There are several 6 story condo buildings as well as surrounding townhomes. Acacia is anchored with a community center complete with indoor pool, library, fitness room, huge main common room and kitchen facilities. There is also an outdoor swimming pool. The PACE bus services Acacia bringing commuters to the Western Springs train station and back. There are tennis courts and basketball courts, hiking trails and lots of gardens and mature trees.

We are considering purchasing a condo in this community. If you knew that we lived there, would you consider moving there? How about you?

Wouldn't it be easier to slowly integrate families with children with disabilities into the community, keeping a balanced ratio of families with "typical" kids and empty nesters? Then, when friendships are built and familiarity with the community grows, form a cooperative, and begin to identify and place appropriate supports for adults with DD to live independently. Parents can stick around in thier condo or not. This would be far from a segregated community. It would become a fully integrated subdivison that happens to include 6 story condo buildings, some of which are owned by people with disabilities and families with children who have disabilities.

Thoughts?

Pam & Josh

Western Springs

[Guest guest]

I cannot contain myself. Absolutely we do need to be vigelant when ideas

come across that look good, but may really be " pretty " institutions. I am

gladd Ellen took a stand and I SO support the stand. I hate the idea that

our people move into " slots " or " beds " and live with roommates...the first

time they meet is on moving day. They may have as many as 10-16

roommates. when our oldest son left, he found an " apartment " when he

decided not to have a roommate, he used the second bedroom as his office. He

works in the community . Any time he wants to, he calls us and we cann

call him. In fact we called each other right after he moved in. No one

was concerned those initial calls would have him pining to come home and set

him back. So why should his younger brother who has Down Syndrome , have

any less/different. And why should we settle for any less or different than

community based housing, rec, work, quality of life.

Our son with Down Syndrome was included, now in transition, he works 4 days

a week in DT Naperville, walks home from his job, sometimes stops on the way

to get a hair cut. Once in a while he stops at Starbucks to buy a newspaper

and have the opportunity to get ticked because of what the Cubs have done.

All along the route, I know people know him, or are getting to see him as a

familiar part of the community, just like grade school / high school, now it

is the bigger community. With a lot of work on his part, and the

transition people his adult life in the community is unfolding.

We should not settle for less, and certainly the quality of life dream we

have is going to take some heavy lifting on our part. Good luck to all on

this IPADD, as we all journey to our dreams.

Cindi

[Guest guest]

nice idea Pam.

Cindi

[Guest guest]

Think in terms of shared expense...maybe your son or daughter would have a roommate who could afford to pay the bulk of the housing cost and your family would do a little more in terms of respite, transportation to events, or make some other contribution to the quality of life elements that might be needed...

There may be other sources of funding for those who do not have the financial resources...federal money? corporate money?

Ellen

Ellen Garber Bronfeldegskb@...

Re: Dream

I think many of us couldn't afford that condo plus it's monthly maintenance. I do agree that it is probably better for us, as the family, to set up our own type of housing for our children.>> Hi - > As many of you might recall, I have been exploring the issue of residential living as it applies to my son Josh (18) and our family. I don't think the answer is starting from scratch. Here's my thinking right now. > We found an existing community in Indian Head Park, Acacia. There are several 6 story condo buildings as well as surrounding townhomes. Acacia is anchored with a community center complete with indoor pool, library, fitness room, huge main common room and kitchen facilities. There is also an outdoor swimming pool. The PACE bus services Acacia bringing commuters to the Western Springs train station and back. There are tennis courts and basketball courts, hiking trails and lots of gardens and mature trees. > We are considering purchasing a condo in this community. If you knew that we lived there, would you consider moving there? How about you? > Wouldn't it be easier to slowly integrate families with children with disabilities into the community, keeping a balanced ratio of families with "typical" kids and empty nesters? Then, when friendships are built and familiarity with the community grows, form a cooperative, and begin to identify and place appropriate supports for adults with DD to live independently. Parents can stick around in thier condo or not. This would be far from a segregated community. It would become a fully integrated subdivison that happens to include 6 story condo buildings, some of which are owned by people with disabilities and families with children who have disabilities. > Thoughts?> Pam & Josh > Western Springs>

[Guest guest]

Well put, Cindi.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Dream

I cannot contain myself. Absolutely we do need to be vigelant when ideas come across that look good, but may really be "pretty" institutions. I am gladd Ellen took a stand and I SO support the stand. I hate the idea that our people move into "slots" or "beds" and live with roommates...the first time they meet is on moving day. They may have as many as 10-16 roommates. when our oldest son left, he found an "apartment" when he decided not to have a roommate, he used the second bedroom as his office. He works in the community . Any time he wants to, he calls us and we cann call him. In fact we called each other right after he moved in. No one was concerned those initial calls would have him pining to come home and set him back. So why should his younger brother who has Down Syndrome , have any less/different. And why should we settle for any less or different than community based housing, rec, work, quality of life.Our son with Down Syndrome was included, now in transition, he works 4 days a week in DT Naperville, walks home from his job, sometimes stops on the way to get a hair cut. Once in a while he stops at Starbucks to buy a newspaper and have the opportunity to get ticked because of what the Cubs have done. All along the route, I know people know him, or are getting to see him as a familiar part of the community, just like grade school / high school, now it is the bigger community. With a lot of work on his part, and the transition people his adult life in the community is unfolding.We should not settle for less, and certainly the quality of life dream we have is going to take some heavy lifting on our part. Good luck to all on this IPADD, as we all journey to our dreams.Cindi

[Guest guest]

Pam,

I know exactly what development you're talking about and think it's

great that you're thinking along these lines. This reminds me of a

movement called 'intentional living' and is similar to what some

folks are purposefully doing in our town -- that is, buying homes or

other living situations close by one another so that the families

are fully integrated into their natural community, but also are

close enough to offer some " inter-family supports " to one another

via informal networks of parents whose adult children with DDs are

there to support & help each other.

When I was talking to our City's Social Services Coordinator

recently, she mentioned that when a townhouse community was being

constructed here in town about 15 years ago, that a local DD service

provider purchased 3 of the units to operate as group homes. That

was a good idea, I'm sure, but what she said has happened in reality

is that because these units are 'staffed' by non-residents and non-

family members, and because none of the residents with DDs had grown

up in town (that's another story!) she said that their initial

intention of community integration hasn't really materialized...in

other words, the people with DDs are PHYSICALLY there in the

integrated environment, but they are far from feeling a PART OF

their community...mainly because attempts by the staff to 'mix' with

the typical residents hasn't worked. I think (and the Social

Service person thinks too) this is because there was no one involved

initially who could serve as the 'bridge' between these residents

with DDs and the general population, so the typical residents didn't

have any particular reason or motivation or opportunity to meet and

bond with any of their neighbors with DDs.

But with the intentional living model you're talking about, Josh

would

initially be moving there as part of your family -- not as a person

with a DD who had a paid staff person to take care of him -- and so

I'd hope there could be a different outcome and that relationships

with neighbors COULD be nurtured. I'll also bet that a place like

Acacia has some clubs and other activities for it's residents that

would provide even more opportunities for socializing and building

that feeling of 'belonging'.

The trick for me (and biggest challenge for me personally) is

getting

neighbors to relate to DIRECTLY and not through me -- do you

know what I mean? I've served as her 'interpreter' and 'ambassador'

for so long that sometimes it's hard for me to pull back and force

or allow a natural interaction to occur!! Ok, yes, I do have some

control issues in case anyone's wondering! But I do see now how

I've inadvertently undermined 's ability to be 'known' in our

home community -- and it's something I definitely need to work on

here, as well as wherever our next living situation finds us.

Let's all keep talking about this!

Laurie

[Guest guest]

Cindi, There is nothing that I would love more then to see my son with Down Syndrome living on his own. My son works at the local Jewel, is active with the social outings with the Hanson center, and the community. No matter where we go someone knows him. I do not want to put him away or limit his ability to be a part of the community he grew up in and loves. My son could never live alone with out assistance. I have one other son and many family members, however if and when something happens to me and his stepfather, I would like to be happy for the rest of his life. If he went to live with other family members he would be taken out of his element and community. That is why I am thinking about his future now. needs someone to help with money, time, when to get up for work and when to go to bed. What the right things are to eat, who to trust and who not to trust. is

very active and social and loves to be with people of all ages and disabilities or no disabilities. I am looking for a future living situation that he would be comfortable with after we are gone with others like him and others that could help him, without an institution setting. I know his family would check on him and visit but it is asking a lot for them to take him in and away from everything he knows and loves. I feel better to change things sooner then later. I am just looking for the right solution. I think we all are. ShirleyCindi Swanson <cbswanson@...> wrote: I cannot contain myself. Absolutely we do need to be vigelant when ideas come across that look good, but may really be "pretty" institutions. I am gladd Ellen took a stand and I SO support the stand. I hate the idea that our people move into "slots" or "beds" and live with roommates...the first time they meet is on moving day. They may have as many as 10-16 roommates. when our oldest son left, he found an "apartment" when he decided not to have a roommate, he used the second bedroom as his office. He works in the community . Any time he wants to, he calls us and we cann call him. In fact we called each other right after he moved in. No one was concerned those initial calls would have him pining to come home and set him back. So why should his younger brother who has Down Syndrome , have any less/different. And why

should we settle for any less or different than community based housing, rec, work, quality of life.Our son with Down Syndrome was included, now in transition, he works 4 days a week in DT Naperville, walks home from his job, sometimes stops on the way to get a hair cut. Once in a while he stops at Starbucks to buy a newspaper and have the opportunity to get ticked because of what the Cubs have done. All along the route, I know people know him, or are getting to see him as a familiar part of the community, just like grade school / high school, now it is the bigger community. With a lot of work on his part, and the transition people his adult life in the community is unfolding.We should not settle for less, and certainly the quality of life dream we have is going to take some heavy lifting on our part. Good luck to all on this IPADD, as we all journey to our dreams.Cindi

[Guest guest]

Likewise, I would never assume our son could do it completely on his own.

He will need s support paying the bills, runnng the house etc. But He, and

it sounds like your son, has such a great quality of life with people they

enjoy, I want it to happen here, where he has made his investment .

Intentional Community!!! And this is certainly a life that has been very

purposefully and strategically planned, and now we are building on the next

steps.I /we are hoping we can make this his spot, and of course have the

involvement of a few other like minded families with young adults who have

similar intersts as Adam.Cindi

[Guest guest]

I so agree with you Cindi. Even though, I have found the group homes

that we've checked out to be 'nice', the thought of my daughter,

sharing a bedroom with someone old enough to be her grandmother, does

no appeal to me. I would much rather have her and maybe two to three

other roommates share a residence that the families support.

>

> I cannot contain myself. Absolutely we do need to be vigelant

when ideas

> come across that look good, but may really be " pretty "

institutions. I am

> gladd Ellen took a stand and I SO support the stand. I hate the

idea that

> our people move into " slots " or " beds " and live with

roommates...the first

> time they meet is on moving day. They may have as many as 10-16

> roommates. when our oldest son left, he found an " apartment "

when he

> decided not to have a roommate, he used the second bedroom as his

office. He

> works in the community . Any time he wants to, he calls us and we

cann

> call him. In fact we called each other right after he moved in.

No one

> was concerned those initial calls would have him pining to come

home and set

> him back. So why should his younger brother who has Down

Syndrome , have

> any less/different. And why should we settle for any less or

different than

> community based housing, rec, work, quality of life.

> Our son with Down Syndrome was included, now in transition, he

works 4 days

> a week in DT Naperville, walks home from his job, sometimes stops

on the way

> to get a hair cut. Once in a while he stops at Starbucks to buy a

newspaper

> and have the opportunity to get ticked because of what the Cubs

have done.

> All along the route, I know people know him, or are getting to see

him as a

> familiar part of the community, just like grade school / high

school, now it

> is the bigger community. With a lot of work on his part, and

the

> transition people his adult life in the community is unfolding.

> We should not settle for less, and certainly the quality of life

dream we

> have is going to take some heavy lifting on our part. Good luck to

all on

> this IPADD, as we all journey to our dreams.

> Cindi

>

[Guest guest]

Cindi, sounds like we are on the same page somewhat. Keep in touch. ShirleyCindi Swanson <cbswanson@...> wrote: Likewise, I would never assume our son could do it completely on his own. He will need s support paying the bills, runnng the house etc. But He, and it sounds like your son, has such a great quality of life with people they enjoy, I want it to happen here, where he has made his investment . Intentional Community!!! And this is certainly a life that has been very purposefully and

strategically planned, and now we are building on the next steps.I /we are hoping we can make this his spot, and of course have the involvement of a few other like minded families with young adults who have similar intersts as Adam.Cindi

[Guest guest]

You're right, I didn't mean it the way it sounds. I meant a community not exclusive to those with disabilities, but including and welcoming to all and with a sense of real belonging, not just tolerence. Yet a place that provides the supervision and support our kids will need. I definitely want Ruth with people of all kinds, just like our neighborhood now. I do not want her or any other kids "separate" from society. YUK!!! Slap me if that's how I sounded! I even have a spot picked out in Naperville, near a condo building and single family homes, that is walking distance to a grocery, pharmacy, restaurants, bakery, bank, church and a few other places of possible employment. That's what I'm talking about! An arrangement where she has a roommate or 2, that she knows, supervised by family and friends. This is what I really want a sense of what it would take to make happen, financially and legally. Sorry if I set everybody's hair on end! We really do have very similar dreams. Well, I got you all talking anyway!!!!!! There were more emails today than in a while! Ellen Bronfeld <egskb@...> wrote: Ok...I am going to keep saying this...be careful what you wish for... what you are describing is so dangerously close to a CLOSED community, aka institutional model...It

doesn't start out sounding and feeling like that, but in essence that is what it becomes. Look around at your own communities and think about ways to provide mixed housing and include and integrate within the "real" world. I did like your thought about a condo building ...Jane Doyle, Exec. Director of Center for Independent Futures put together a similar deal in the Sienna Gardens condos in ton that provides about 6 units for individuals with disabilities. You can call Center for Independent Futures at 847/328-2044 for further info on that project and other things they are doing. Ellen Ellen Garber Bronfeldegskbsbcglobal (DOT) net Dream> > > > > > Ok, just hear me out. My son is 26 with Down

Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks >

> for reading. Shirley> >> Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

thanks for the clarification, ! The more our people are a part of a

neighborhood, the more that community becomes a part of them. Grocery

shopping, work, walking to the library. I would love it if there were a few

whol lived nearby, Intentional Community, where our folks could live in some

sence of securityeh dignity of risk!

By the way, what neighborhood in our town is walking distance from a grocery

stor?

We all need to think of colaboration.. especially if our people enjoy one

another's company.

on to the journey, Cindi

[Guest guest]

I have been eyeing up the neighborhood near Trader Joe's and Casey's. The hospital is even walking distance. I was even imagining myself helping supervise a condo or home when I am a retired teacher in 6 more years. We have talked to both of our other children about helping take care of Ruth when we are gone, but I also don't want her to be uprooted and taken away from what she is used to. I guess we will see where her siblings decide to settle. Thanks for acknowledging my clarification. I sure don't want to alienate anyone in this group. I have a feeling I will need you all for a long time!! Cindi Swanson <cbswanson@...> wrote: thanks for the clarification, ! The more our people are a part of a neighborhood, the more that community becomes a part of them. Grocery shopping, work, walking to the library. I would love it if there were a few whol lived nearby, Intentional Community, where our folks could live in some sence of securityeh dignity of risk!By the way, what neighborhood in our town is walking distance from a grocery stor?We all need to think of colaboration.. especially if our people enjoy one another's company.on to the journey, Cindi

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[Guest guest]

I think you Cindi and I are all thinking the same way. Maybe one day our dream will come true for your children. Shirley Pligge <wpligge@...> wrote: You're right, I didn't mean it the way it sounds. I meant a community not exclusive to those with disabilities, but including and welcoming to all and with a sense of real belonging, not just tolerence. Yet a place that provides the supervision and support our kids will need. I definitely want Ruth with people of

all kinds, just like our neighborhood now. I do not want her or any other kids "separate" from society. YUK!!! Slap me if that's how I sounded! I even have a spot picked out in Naperville, near a condo building and single family homes, that is walking distance to a grocery, pharmacy, restaurants, bakery, bank, church and a few other places of possible employment. That's what I'm talking about! An arrangement where she has a roommate or 2, that she knows, supervised by family and friends. This is what I really want a sense of what it would take to make happen, financially and legally. Sorry if I set everybody's hair on end! We really do have very similar dreams. Well, I got you all talking anyway!!!!!! There were more emails today than in a while! Ellen Bronfeld <egskbsbcglobal (DOT) net> wrote: Ok...I am going to keep saying this...be careful what you wish for... what you are describing is so dangerously close to a CLOSED community, aka institutional model...It doesn't start out sounding and feeling like that, but in essence that is what it becomes. Look around at your own communities and think about ways to provide mixed housing and include and integrate within the "real" world. I did like your thought about a condo building ...Jane Doyle, Exec. Director of Center for Independent Futures put together a similar deal in the Sienna Gardens condos in ton that provides about 6 units for individuals with disabilities. You can call Center for Independent Futures at 847/328-2044 for further info on that project and other things they are doing. Ellen Ellen Garber Bronfeldegskbsbcglobal (DOT) net Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with

where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >> Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains. Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

I am getting a little chuckle out of all of this...email does have it's limitations! This dialogue has been great and we should be energized at the thought that we all want the same things for our wonderful children. Now we have to get out there and make the community a welcoming place for our children and we have to be talking to our legislators and city/village officials to tell them our stories and to let them know what our children need now and into the future.

And each and every time you do any of the above, share it with us and help to motivate us to do the same!

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

We need each other!

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Dream

I have been eyeing up the neighborhood near Trader Joe's and Casey's. The hospital is even walking distance. I was even imagining myself helping supervise a condo or home when I am a retired teacher in 6 more years.

We have talked to both of our other children about helping take care of Ruth when we are gone, but I also don't want her to be uprooted and taken away from what she is used to. I guess we will see where her siblings decide to settle.

Thanks for acknowledging my clarification. I sure don't want to alienate anyone in this group. I have a feeling I will need you all for a long time!!

Cindi Swanson <cbswansonjuno> wrote:

thanks for the clarification, ! The more our people are a part of a neighborhood, the more that community becomes a part of them. Grocery shopping, work, walking to the library. I would love it if there were a few whol lived nearby, Intentional Community, where our folks could live in some sence of securityeh dignity of risk!By the way, what neighborhood in our town is walking distance from a grocery stor?We all need to think of colaboration.. especially if our people enjoy one another's company.on to the journey, Cindi

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[Guest guest]

Not maybe...definitely...

We can do this...

Together and with great resolve and effort.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

I rarely email because I always feel "alone" down south near Belleville but good things (I think) are beginning to happen. Trinity Services is opening a day training program and residential options for people in our area. What can you tell me about your experiences with Trinity Services? I know I have read emails talking about your young people receiving services with them. Thanks, Ellen Bronfeld <egskb@...> wrote: Not maybe...definitely... We can do this... Together and with great resolve and effort. Ellen Ellen Garber Bronfeldegskbsbcglobal (DOT) net Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices

> > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >> Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains. Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

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[Guest guest]

Ok, I'll go first and tell my little story. Cindi and I live in the same town and although our kids don't run in the same 'circles', she and I try to get a lot of the world's problems solved over coffee and breakfasts.

Cindi has connections to our local Chamber president, and has been pursuing that avenue re: employment initiatives. I joined our city's Disability Commission last year, and have been getting to know a lot of people that way who help make local decisions into things like zoning, local city grants, city compliance with ADA 'accessibility' i.e. more housing related stuff. We are honing our collective 'schmoozing' skills along the way. After months of feeling like I was getting nowhere fast, this weekend I had a friendly breakfast meeting with two of the nice women from our Commission. One of them works at the City in Social Services. Now that they know me a bit, and also in part because of all the press that autism has been getting, they were asking lots of questions about my and her future. Guess what? The social service person has an adult nephew who lives in another state, that she helps the parents with legal/social service type stuff for...and they are thinking now he is somewhere on the PDD spectrum. So, she understands a lot of the issues that I was starting to talk about -- my concerns about not 'fitting into' the traditional models of day programs where there may not be the staffing levels or structure she needs; she completely understood about the need to integrate persistently and systematically in order to achieve even small successes in social relationships; and as far as housing she understood the possible issues with sharing bedrooms, uprooting and moving into a totally 'foreign' new community etc. She 'got' it -- because she knows the struggles her nephew has, what works for him and what doesn't.

If I hadn't joined this Commission I would never have known this person, nor would we have been sitting across the diner table from one another sharing these stories about our loved ones. And I have to believe that having worked alongside her on several city projects has built trust and a comfort level with one another that otherwise wouldn't have been.

Here's the cool part -- she now wants us to set up a meeting with her boss to talk about the housing, employment and social needs of our residents with DDs, and to begin speaking to others in the city who decide things like those local grants, someone from Council who is a banker, etc. etc. She has so many connections because she's worked in city government for years and years -- people know her and trust her. Now I know her too, and it turns out we share some of the same priorities.

I share this story because I learned an important lesson -- don't overlook cultivating relationships with community volunteers or employees of your local government -- while they may not 'specialize' in your child's particular disability (or in disabilities at all) they may be able to open doors that otherwise would remain closed to us.

Laurie

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

Laurie...you make an excellent point. If you are able, being an integral part of "the system" by volunteering on boards and committees is a valuable tool in cultivating relationships and opening doors.

Great story!

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

Hi

Cindi, I enjoyed reading about your son, it sounds like he's doing very very well !!

My son is just 15 and is

HFA and I hope for him to have a very freedom filled productive life. Most who know him just love him, he reads to the little campers at the YMCA (he attends teen camp there) and they love it, even the other teen campers think he's a cool kid. We have a few years yet but I'm already thinking about the future, okay, I've been thinking about his independent future since he started Jr. High.

Have a great day all! I've not been posting lately, life is a bit crazy. My mom suffered a stroke last week and was just transferred to a rehab facility last night.Then there is my 87 year old dad too...........

Hugs,

H.

Re: Re: Dream

I cannot contain myself. Absolutely we do need to be vigelant when ideas come across that look good, but may really be "pretty" institutions. I am gladd Ellen took a stand and I SO support the stand. I hate the idea that our people move into "slots" or "beds" and live with roommates...the first time they meet is on moving day. They may have as many as 10-16 roommates. when our oldest son left, he found an "apartment" when he decided not to have a roommate, he used the second bedroom as his office. He works in the community . Any time he wants to, he calls us and we cann call him. In fact we called each other right after he moved in. No one was concerned those initial calls would have him pining to come home and set him back. So why should his younger brother who has Down Syndrome , have any less/different. And why should we settle for any less or different than community based housing, rec, work, quality of life.

Our son with Down Syndrome was included, now in transition, he works 4 days a week in DT Naperville, walks home from his job, sometimes stops on the way to get a hair cut. Once in a while he stops at Starbucks to buy a newspaper and have the opportunity to get ticked because of what the Cubs have done. All along the route, I know people know him, or are getting to see him as a familiar part of the community, just like grade school / high school, now it is the bigger community. With a lot of work on his part, and the transition people his adult life in the community is unfolding.

We should not settle for less, and certainly the quality of life dream we have is going to take some heavy lifting on our part. Good luck to all on this IPADD, as we all journey to our dreams.

Cindi

[Guest guest]

I love reading all the ideas that everyone is "thinking" It is by getting each of us to think a little different that a few of us will come up with some great "solutions". Let the ideas keep flowing!

Re: Re: Dream

Cindi, There is nothing that I would love more then to see my son with Down Syndrome living on his own. My son works at the local Jewel, is active with the social outings with the Hanson center, and the community. No matter where we go someone knows him. I do not want to put him away or limit his ability to be a part of the community he grew up in and loves. My son could never live alone with out assistance. I have one other son and many family members, however if and when something happens to me and his stepfather, I would like to be happy for the rest of his life. If he went to live with other family members he would be taken out of his element and community. That is why I am thinking about his future now. needs someone to help with money, time, when to get up for work and when to go to bed. What the right things are to eat, who to trust and who not to trust. is very active and social and loves to be with people of all ages and disabilities or no disabilities. I am looking for a future living situation that he would be comfortable with after we are gone with others like him and others that could help him, without an institution setting. I know his family would check on him and visit but it is asking a lot for them to take him in and away from everything he knows and loves. I feel better to change things sooner then later. I am just looking for the right solution. I think we all are.

ShirleyCindi Swanson <cbswansonjuno> wrote:

I cannot contain myself. Absolutely we do need to be vigelant when ideas come across that look good, but may really be "pretty" institutions. I am gladd Ellen took a stand and I SO support the stand. I hate the idea that our people move into "slots" or "beds" and live with roommates...the first time they meet is on moving day. They may have as many as 10-16 roommates. when our oldest son left, he found an "apartment" when he decided not to have a roommate, he used the second bedroom as his office. He works in the community . Any time he wants to, he calls us and we cann call him. In fact we called each other right after he moved in. No one was concerned those initial calls would have him pining to come home and set him back. So why should his younger brother who has Down Syndrome , have any less/different. And why should we settle for any less or different than community based housing, rec, work, quality of life.Our son with Down Syndrome was included, now in transition, he works 4 days a week in DT Naperville, walks home from his job, sometimes stops on the way to get a hair cut. Once in a while he stops at Starbucks to buy a newspaper and have the opportunity to get ticked because of what the Cubs have done. All along the route, I know people know him, or are getting to see him as a familiar part of the community, just like grade school / high school, now it is the bigger community. With a lot of work on his part, and the transition people his adult life in the community is unfolding.We should not settle for less, and certainly the quality of life dream we have is going to take some heavy lifting on our part. Good luck to all on this IPADD, as we all journey to our dreams.Cindi

[Guest guest]

Very Good Laurie!! This is what I have been trying to do for the last 4 years, and trying to get others to get involved. I realize we all have so much on our plate already, but it is this "schmoozing" that brings our needs to the forefront. As you said, people need to get to know us and trust us first before they will see our needs as something more that just complaining.

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

Exactly right, . We need to be seen as part of the solution, not just part of the problem. It is so important for those of us who can, to make a contribution to our communities by volunteering on boards and committees. We get known and recognizied as givers and not just takers...The best advice I ever got from a teacher when my son was just diagnosed was...get involved and join everything.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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