Jump to content
RemedySpot.com

RE: Re: Group Home in Skokie

Rate this topic

Guest guest

By Guest guest
in Health, Medicine and Natural Healing 10

 Share

Recommended Posts

Guest guest

Guest guest

Posted
Posted

From a provider standpoint...

If we have an open room, we are happy to consider anyone with funding and the

same is true for other providers I know.  Especially since the state is behind,

providers want to have every available space filled.

The department or committee that makes funding decisions operates in an

alternate universe or the twilight zone.  We worked with someone and somehow,

CILA funding came through in a couple of months against our expectations.  The

person in question was not in any dangerous situation or about to be homeless.

 Sometimes presentation helps.  The person applying for funding should

construct all materials to read as if the situation was desperate, emphasizing

and playing up all difficulties.  It helps to have a creative, determined PAS

agent..

andra Conroy Baig

Executive Director and Community Leader

L'Arche Chicago Office: 2010 W. Carroll Avenue, Chicago, IL

60612                     Office:312-226-1273 Home:

773-287-8249   " The secret to l'Arche is relationship: meeting people...heart

to heart " .  Vanier

Visit us on the 2nd Thursday of each month at 1049 S. Austin Blvd., Chicago

From: ELLEN BRONFELD <egskb@...>

Subject: Re: Group Home in Skokie

IPADDUnite

Date: Monday, December 20, 2010, 8:34 AM

 

Hi all:

Forgot to address the issue of choice...

Once one gets funding, one does have a choice, based on what is available...

If it hadn't been for the opportunity in Skokie, Noah's choices would have been

very limited. Because of late payments, most agencies are not taking any new

clients unless they have an open bed. We were turned down by some agencies, as

they had no openings. Almost every CILA is filled to the max, as agencies have

closed homes and consolidated, to save money. The best that we found, aside

from the Skokie house, was in a group home of five men. It would have required

dividing a medium sized bedroom in half with some sort of curtain arrangement

and he would have been the 6th in that house. The other individual in that room

is up a lot at night and can be disruptive. It wasn't a great fit. It was

about equidistant from our home in Northbrook, but I grew up in Skokie and have

a sister there, so, from a community perspective, Skokie was a better fit. That

is what I mean by " choice " ...he did get to consider a couple of options, but not

many.

Ellen

Ellen Garber Bronfeld

egskb@...

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Congratulations, Ellen!

I'd like to add a couple of thoughts to this discussion. I think I've met

Noah a couple of times but I surely don't really know him. So I'll reference

myself and talk a little about crisis or emergency funding.

I think the words we read describing emergency or crisis funding eligibility

are " abuse, neglect, homelessness " . I think that often people think that

" abuse " only refers to " abuse " to the person with a disability. I'd spin it

differently. I would say clearly that was " abusing " his parents. We

would have never thought to use that word to describe out wonderful son.

But, if we stepped back to think about his challenging behaviors that is

what we were experiencing. Lord knows how much we love him, but life was

incredibly difficult.

Sometimes I think parents like Ellen and her husband or myself and my

husband and most of you, we do too good a job of " keeping it together " . We

have to or we can't face the next day. And besides that in between the

drama, even during the drama, we love them so intensely we are still seeing

that extraordinary human being who is our child.

So I'm guessing that Ellen, while being accurate, is understating Noah's

challenges.

And another moment of philosophical meandering.. the trigger for me when it

came time to let move out was realizing that I couldn't do for him

what he needed to grow and learn and live a full life. We had neither the

time, the financial or emotional resources. So in a way, our passion and

devotion for him were making our home an " institution " of one as our ability

to take him out was deteriorating with his behavioral challenges. Neglect by

devotion. I could make that argument as dumb as it sounds.

So as many of you have heard me say: be sure and read the cover letter that

accompanies the packet of information that goes into DHS/DD when you are

applying for services. Don't make stuff up. But be brutally honest and

clear. Make especially sure it includes the challenges your child

experiences and how often they occur. Be sure you explain what will happen

to your job if you don't get funding. Or whatever the challenges are in your

lives. We all hate to describe our children or our lives in the negative.

But, this is the moment to do it.

Having said all that I'd like to share that yesterday and his

housemates accompanied us to church as is our habit. Afterwards I cut his

hair. thank goodness he looks fabulous in a buzz cut and we all had a brunch

of pancakes and eggs. His sister is home from college and we went to the

movies. We saw " Tangled " . Go! You'll love it. We roared.

Hugs to all of you and Happy Holidays! Charlotte

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Ellen, was this considered an emergency placement?  Some of us have been told

there are no openings anywhere unless it is considered an emergency

situation. I know there are bed available in my area but this is what I was

told. (Not trying to be nosey)

Shirley

From: ELLEN BRONFELD <egskb@...>

Subject: Re: Group Home in Skokie

IPADDUnite

Date: Monday, December 20, 2010, 2:34 PM

 

Hi all:

Forgot to address the issue of choice...

Once one gets funding, one does have a choice, based on what is available...

If it hadn't been for the opportunity in Skokie, Noah's choices would have been

very limited. Because of late payments, most agencies are not taking any new

clients unless they have an open bed. We were turned down by some agencies, as

they had no openings. Almost every CILA is filled to the max, as agencies have

closed homes and consolidated, to save money. The best that we found, aside from

the Skokie house, was in a group home of five men. It would have required

dividing a medium sized bedroom in half with some sort of curtain arrangement

and he would have been the 6th in that house. The other individual in that room

is up a lot at night and can be disruptive. It wasn't a great fit. It was about

equidistant from our home in Northbrook, but I grew up in Skokie and have a

sister there, so, from a community perspective, Skokie was a better fit. That is

what I mean by " choice " ...he did get to consider a couple of options, but not

many.

Ellen

Ellen Garber Bronfeld

egskb@...

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Charlotte, and I loved Tangled :-) Yogi Bear is our next movie to go and

see!

H.

RE: Re: Group Home in Skokie

Congratulations, Ellen!

I'd like to add a couple of thoughts to this discussion. I think I've met

oah a couple of times but I surely don't really know him. So I'll reference

yself and talk a little about crisis or emergency funding.

I think the words we read describing emergency or crisis funding eligibility

re " abuse, neglect, homelessness " . I think that often people think that

abuse " only refers to " abuse " to the person with a disability. I'd spin it

ifferently. I would say clearly that was " abusing " his parents. We

ould have never thought to use that word to describe out wonderful son.

ut, if we stepped back to think about his challenging behaviors that is

hat we were experiencing. Lord knows how much we love him, but life was

ncredibly difficult.

Sometimes I think parents like Ellen and her husband or myself and my

usband and most of you, we do too good a job of " keeping it together " . We

ave to or we can't face the next day. And besides that in between the

rama, even during the drama, we love them so intensely we are still seeing

hat extraordinary human being who is our child.

So I'm guessing that Ellen, while being accurate, is understating Noah's

hallenges.

And another moment of philosophical meandering.. the trigger for me when it

ame time to let move out was realizing that I couldn't do for him

hat he needed to grow and learn and live a full life. We had neither the

ime, the financial or emotional resources. So in a way, our passion and

evotion for him were making our home an " institution " of one as our ability

o take him out was deteriorating with his behavioral challenges. Neglect by

evotion. I could make that argument as dumb as it sounds.

So as many of you have heard me say: be sure and read the cover letter that

ccompanies the packet of information that goes into DHS/DD when you are

pplying for services. Don't make stuff up. But be brutally honest and

lear. Make especially sure it includes the challenges your child

xperiences and how often they occur. Be sure you explain what will happen

o your job if you don't get funding. Or whatever the challenges are in your

ives. We all hate to describe our children or our lives in the negative.

ut, this is the moment to do it.

Having said all that I'd like to share that yesterday and his

ousemates accompanied us to church as is our habit. Afterwards I cut his

air. thank goodness he looks fabulous in a buzz cut and we all had a brunch

f pancakes and eggs. His sister is home from college and we went to the

ovies. We saw " Tangled " . Go! You'll love it. We roared.

Hugs to all of you and Happy Holidays! Charlotte

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thanks, Ellen,

As the director of a (very small) CILA provider, I want to be encouraging but at

the same time realistic.  Bit of an oxymoron, combining those two words with

State of IL, but we are all used to living in paradox by now...

andra Conroy Baig

Executive Director and Community Leader

L'Arche Chicago Office: 2010 W. Carroll Avenue, Chicago, IL

60612                     Office:312-226-1273 Home:

773-287-8249   " The secret to l'Arche is relationship: meeting people...heart

to heart " .  Vanier

Visit us on the 2nd Thursday of each month at 1049 S. Austin Blvd., Chicago

From: ELLEN BRONFELD <egskb@...>

Subject: Re: Group Home in Skokie

IPADDUnite

Date: Tuesday, December 21, 2010, 4:10 PM

 

I want to thank and Charlotte for their insightful and supportive

comments about State funding for residential services.

Charlotte's empathy and poignant and very realistic description of our lives was

truly comforting to me at this time.

Ellen

Ellen Garber Bronfeld

egskb@...

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Thanks Charlotte for your words of wisdom.  I am a single mom.  My son is

going to be 21 and I have his 23 year old sister still at home.  I also have my

mom who is 76.  I know the time will come when we will be in crisis mood. Your

words are so helpful.  I am a educator my profession and sometimes it is hard

to follow the advice you give to your parents.  It is very different when it is

your son. 

Merry Christmas and Happy New Year to all.

Maureen

From: sunshinebeaches3@... <sunshinebeaches3@...>

Subject: Re: Re: Group Home in Skokie

IPADDUnite

Date: Monday, December 20, 2010, 12:04 PM

 

Charlotte, and I loved Tangled :-) Yogi Bear is our next movie to go and

see!

H.

RE: Re: Group Home in Skokie

Congratulations, Ellen!

I'd like to add a couple of thoughts to this discussion. I think I've met

oah a couple of times but I surely don't really know him. So I'll reference

yself and talk a little about crisis or emergency funding.

I think the words we read describing emergency or crisis funding eligibility

re " abuse, neglect, homelessness " . I think that often people think that

abuse " only refers to " abuse " to the person with a disability. I'd spin it

ifferently. I would say clearly that was " abusing " his parents. We

ould have never thought to use that word to describe out wonderful son.

ut, if we stepped back to think about his challenging behaviors that is

hat we were experiencing. Lord knows how much we love him, but life was

ncredibly difficult.

Sometimes I think parents like Ellen and her husband or myself and my

usband and most of you, we do too good a job of " keeping it together " . We

ave to or we can't face the next day. And besides that in between the

rama, even during the drama, we love them so intensely we are still seeing

hat extraordinary human being who is our child.

So I'm guessing that Ellen, while being accurate, is understating Noah's

hallenges.

And another moment of philosophical meandering.. the trigger for me when it

ame time to let move out was realizing that I couldn't do for him

hat he needed to grow and learn and live a full life. We had neither the

ime, the financial or emotional resources. So in a way, our passion and

evotion for him were making our home an " institution " of one as our ability

o take him out was deteriorating with his behavioral challenges. Neglect by

evotion. I could make that argument as dumb as it sounds.

So as many of you have heard me say: be sure and read the cover letter that

ccompanies the packet of information that goes into DHS/DD when you are

pplying for services. Don't make stuff up. But be brutally honest and

lear. Make especially sure it includes the challenges your child

xperiences and how often they occur. Be sure you explain what will happen

o your job if you don't get funding. Or whatever the challenges are in your

ives. We all hate to describe our children or our lives in the negative.

ut, this is the moment to do it.

Having said all that I'd like to share that yesterday and his

ousemates accompanied us to church as is our habit. Afterwards I cut his

air. thank goodness he looks fabulous in a buzz cut and we all had a brunch

f pancakes and eggs. His sister is home from college and we went to the

ovies. We saw " Tangled " . Go! You'll love it. We roared.

Hugs to all of you and Happy Holidays! Charlotte

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Diane, I have no guilt. I have fought for that boy. well, now young man,

like a tigress. I suspect you have too. Letting move out was letting

him grow up and prepare for a future without his dad and me. The result is

that we do not live a life of exhaustion and accelerating behavioral cycles.

That is a gift to .

The people in his life have the expertise to support him to extinguish

almost all of his challenging behaviors and provide him with opportunities

to learn and have fun that I just couldn't handle.

I have not abandoned . He lives ten minutes from us. He is home every

single Sunday that we are home. Occasionally we take him out in between. He

knows we adore him and I don't believe for one moment he feels abandoned. We

are incredibly involved in his group home, not just at ISPs. I know his

staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

help . some are expensive like providing new carpet. Some are not so

expensive but labor intensive like painting a room. Some are free like

offering to schedule 's trips home to coordinate with the house

schedule. I know when is unhappy. He is also non verbal. He is far

happier now than when he was living at home.

You've got to get your arms around the idea that there be more to be

" guilty " about trying to keep him at home where he may not be able to get

the supports he needs and you can't have a healthy relationship with him.

That was my eye opening moment.

Hugs. Charlotte

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of swedegrl2005

Sent: Thursday, December 30, 2010 12:30 AM

IPADDUnite

Subject: Re: Group Home in Skokie

Charlotte,

You really sumed it up well, and thank you for saying those things that you

did. It makes me feel a little less worthless as a parent. I sometimes catch

myself dreaming of how " nice " it will be to come home from work at the end

of the day to no loud vcalization noises, or tantrums, or upset siblings/

husband because of the behaviors, and to have somewhat of a relaxing

evening, and a good nights sleep, without being awakened at 2 or 3 am with

loud noises, an all of which are currently a crap shoot from day to day at

this point.

However, how does one get past the guilt, or the fear that their child will

think that you are tired of them, or putting them out? Those are my fears,

and I have had nightmares actually that someone will do something to my

child, and I won't know it is happening b/c my child is non verbal? My son

is 18, and I know that my family situation will not allow me to " keep my

child at home " for that many more years, after he ages out of school.

Do others feel this way too?

Diane S

>

> Congratulations, Ellen!

>

>

>

> I'd like to add a couple of thoughts to this discussion. I think I've met

> Noah a couple of times but I surely don't really know him. So I'll

reference

> myself and talk a little about crisis or emergency funding.

>

>

>

> I think the words we read describing emergency or crisis funding

eligibility

> are " abuse, neglect, homelessness " . I think that often people think that

> " abuse " only refers to " abuse " to the person with a disability. I'd spin

it

> differently. I would say clearly that was " abusing " his parents. We

> would have never thought to use that word to describe out wonderful son.

> But, if we stepped back to think about his challenging behaviors that is

> what we were experiencing. Lord knows how much we love him, but life was

> incredibly difficult.

>

>

>

> Sometimes I think parents like Ellen and her husband or myself and my

> husband and most of you, we do too good a job of " keeping it together " . We

> have to or we can't face the next day. And besides that in between the

> drama, even during the drama, we love them so intensely we are still

seeing

> that extraordinary human being who is our child.

>

>

>

> So I'm guessing that Ellen, while being accurate, is understating Noah's

> challenges.

>

>

>

> And another moment of philosophical meandering.. the trigger for me when

it

> came time to let move out was realizing that I couldn't do for him

> what he needed to grow and learn and live a full life. We had neither the

> time, the financial or emotional resources. So in a way, our passion and

> devotion for him were making our home an " institution " of one as our

ability

> to take him out was deteriorating with his behavioral challenges. Neglect

by

> devotion. I could make that argument as dumb as it sounds.

>

>

>

> So as many of you have heard me say: be sure and read the cover letter

that

> accompanies the packet of information that goes into DHS/DD when you are

> applying for services. Don't make stuff up. But be brutally honest and

> clear. Make especially sure it includes the challenges your child

> experiences and how often they occur. Be sure you explain what will happen

> to your job if you don't get funding. Or whatever the challenges are in

your

> lives. We all hate to describe our children or our lives in the negative.

> But, this is the moment to do it.

>

>

>

> Having said all that I'd like to share that yesterday and his

> housemates accompanied us to church as is our habit. Afterwards I cut his

> hair. thank goodness he looks fabulous in a buzz cut and we all had a

brunch

> of pancakes and eggs. His sister is home from college and we went to the

> movies. We saw " Tangled " . Go! You'll love it. We roared.

>

>

>

> Hugs to all of you and Happy Holidays! Charlotte

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Diane, I have to agree with Charlotte. Letting Beth move into her own place was

part of her growing up. Her father was very hesitant and protective, but we

give our children wings so they can soar and fly. Moving into one's own home is

an important step. No matter your disability, everyone wants a place of their

own....

Beth also comes home every Sunday. She lives about 8 blocks away and can walk

home on nice days. We have been to her home for dinner. Staff helped her with

the preparations but she was so excited to host us. Now she wants us to sleep

over...... Now, when I see Beth I am excited to catch up on her week. I am

excited to cook dinner for her and have her home as a guest. Although we still

provide supports, it is not daily. It gives everyone a different perspective.

Beth calls every week to let me know she cleaned her room. She is so proud. I

thank God every day for this opportunity for her. It is okay to be scared... we

were. But don't hold them back... let them soar and fly.... Warmly,

Ficker Terrill

From: Charlotte Cronin [mailto:fsn@...]

Sent: Thursday, December 30, 2010 10:30 AM

IPADDUnite

Subject: RE: Re: Group Home in Skokie

Diane, I have no guilt. I have fought for that boy. well, now young man,

like a tigress. I suspect you have too. Letting move out was letting

him grow up and prepare for a future without his dad and me. The result is

that we do not live a life of exhaustion and accelerating behavioral cycles.

That is a gift to .

The people in his life have the expertise to support him to extinguish

almost all of his challenging behaviors and provide him with opportunities

to learn and have fun that I just couldn't handle.

I have not abandoned . He lives ten minutes from us. He is home every

single Sunday that we are home. Occasionally we take him out in between. He

knows we adore him and I don't believe for one moment he feels abandoned. We

are incredibly involved in his group home, not just at ISPs. I know his

staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

help . some are expensive like providing new carpet. Some are not so

expensive but labor intensive like painting a room. Some are free like

offering to schedule 's trips home to coordinate with the house

schedule. I know when is unhappy. He is also non verbal. He is far

happier now than when he was living at home.

You've got to get your arms around the idea that there be more to be

" guilty " about trying to keep him at home where he may not be able to get

the supports he needs and you can't have a healthy relationship with him.

That was my eye opening moment.

Hugs. Charlotte

From: IPADDUnite <mailto:IPADDUnite%40>

[mailto:IPADDUnite <mailto:IPADDUnite%40>] On

Behalf Of swedegrl2005

Sent: Thursday, December 30, 2010 12:30 AM

IPADDUnite <mailto:IPADDUnite%40>

Subject: Re: Group Home in Skokie

Charlotte,

You really sumed it up well, and thank you for saying those things that you

did. It makes me feel a little less worthless as a parent. I sometimes catch

myself dreaming of how " nice " it will be to come home from work at the end

of the day to no loud vcalization noises, or tantrums, or upset siblings/

husband because of the behaviors, and to have somewhat of a relaxing

evening, and a good nights sleep, without being awakened at 2 or 3 am with

loud noises, an all of which are currently a crap shoot from day to day at

this point.

However, how does one get past the guilt, or the fear that their child will

think that you are tired of them, or putting them out? Those are my fears,

and I have had nightmares actually that someone will do something to my

child, and I won't know it is happening b/c my child is non verbal? My son

is 18, and I know that my family situation will not allow me to " keep my

child at home " for that many more years, after he ages out of school.

Do others feel this way too?

Diane S

>

> Congratulations, Ellen!

>

>

>

> I'd like to add a couple of thoughts to this discussion. I think I've met

> Noah a couple of times but I surely don't really know him. So I'll

reference

> myself and talk a little about crisis or emergency funding.

>

>

>

> I think the words we read describing emergency or crisis funding

eligibility

> are " abuse, neglect, homelessness " . I think that often people think that

> " abuse " only refers to " abuse " to the person with a disability. I'd spin

it

> differently. I would say clearly that was " abusing " his parents. We

> would have never thought to use that word to describe out wonderful son.

> But, if we stepped back to think about his challenging behaviors that is

> what we were experiencing. Lord knows how much we love him, but life was

> incredibly difficult.

>

>

>

> Sometimes I think parents like Ellen and her husband or myself and my

> husband and most of you, we do too good a job of " keeping it together " . We

> have to or we can't face the next day. And besides that in between the

> drama, even during the drama, we love them so intensely we are still

seeing

> that extraordinary human being who is our child.

>

>

>

> So I'm guessing that Ellen, while being accurate, is understating Noah's

> challenges.

>

>

>

> And another moment of philosophical meandering.. the trigger for me when

it

> came time to let move out was realizing that I couldn't do for him

> what he needed to grow and learn and live a full life. We had neither the

> time, the financial or emotional resources. So in a way, our passion and

> devotion for him were making our home an " institution " of one as our

ability

> to take him out was deteriorating with his behavioral challenges. Neglect

by

> devotion. I could make that argument as dumb as it sounds.

>

>

>

> So as many of you have heard me say: be sure and read the cover letter

that

> accompanies the packet of information that goes into DHS/DD when you are

> applying for services. Don't make stuff up. But be brutally honest and

> clear. Make especially sure it includes the challenges your child

> experiences and how often they occur. Be sure you explain what will happen

> to your job if you don't get funding. Or whatever the challenges are in

your

> lives. We all hate to describe our children or our lives in the negative.

> But, this is the moment to do it.

>

>

>

> Having said all that I'd like to share that yesterday and his

> housemates accompanied us to church as is our habit. Afterwards I cut his

> hair. thank goodness he looks fabulous in a buzz cut and we all had a

brunch

> of pancakes and eggs. His sister is home from college and we went to the

> movies. We saw " Tangled " . Go! You'll love it. We roared.

>

>

>

> Hugs to all of you and Happy Holidays! Charlotte

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

And here's the other side of it. My parents kept my brother at home with

them until one of them died and the other was completely disabled. The move

was traumatic for him. It was beyond traumatic; it was horrific.

There was no one to deal with staff or adjustment problems. There was no

one to help him acclimate. It was not his worst nightmare, since the place

where he lives is actually VERY nice, but it could have been handled better

when my parents were alive to support him during the adjustment.

Did his outbursts shorten their lives? I have no doubt that they did. Did

his controlling and threatening behaviors impair their ability to have a

good quality of life during their later years? Indubitably. What they

perceived as kindness and self-sacrifice was a BAD decision, but it was the

best they could do, given their own issues with guilt and money.

All this is more than I really wanted to share, but it seemed important to

let you know what can happen. I know there are risks in residential

placements, but it is safer for your child to be placed successfully while

you are alive than to gamble on what will happen when there is no one to

speak for him.

Jean

On Thu, Dec 30, 2010 at 10:30 AM, Charlotte Cronin <

fsn@...> wrote:

>

>

> Diane, I have no guilt. I have fought for that boy. well, now young man,

> like a tigress. I suspect you have too. Letting move out was letting

> him grow up and prepare for a future without his dad and me. The result is

> that we do not live a life of exhaustion and accelerating behavioral

> cycles.

> That is a gift to .

>

> The people in his life have the expertise to support him to extinguish

> almost all of his challenging behaviors and provide him with opportunities

> to learn and have fun that I just couldn't handle.

>

> I have not abandoned . He lives ten minutes from us. He is home every

> single Sunday that we are home. Occasionally we take him out in between. He

> knows we adore him and I don't believe for one moment he feels abandoned.

> We

> are incredibly involved in his group home, not just at ISPs. I know his

> staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

> help . some are expensive like providing new carpet. Some are not so

> expensive but labor intensive like painting a room. Some are free like

> offering to schedule 's trips home to coordinate with the house

> schedule. I know when is unhappy. He is also non verbal. He is far

> happier now than when he was living at home.

>

> You've got to get your arms around the idea that there be more to be

> " guilty " about trying to keep him at home where he may not be able to get

> the supports he needs and you can't have a healthy relationship with him.

> That was my eye opening moment.

>

> Hugs. Charlotte

>

> From: IPADDUnite <IPADDUnite%40> [mailto:

> IPADDUnite <IPADDUnite%40>] On

> Behalf Of swedegrl2005

> Sent: Thursday, December 30, 2010 12:30 AM

> IPADDUnite <IPADDUnite%40>

> Subject: Re: Group Home in Skokie

>

> Charlotte,

>

> You really sumed it up well, and thank you for saying those things that you

> did. It makes me feel a little less worthless as a parent. I sometimes

> catch

> myself dreaming of how " nice " it will be to come home from work at the end

> of the day to no loud vcalization noises, or tantrums, or upset siblings/

> husband because of the behaviors, and to have somewhat of a relaxing

> evening, and a good nights sleep, without being awakened at 2 or 3 am with

> loud noises, an all of which are currently a crap shoot from day to day at

> this point.

>

> However, how does one get past the guilt, or the fear that their child will

> think that you are tired of them, or putting them out? Those are my fears,

> and I have had nightmares actually that someone will do something to my

> child, and I won't know it is happening b/c my child is non verbal? My son

> is 18, and I know that my family situation will not allow me to " keep my

> child at home " for that many more years, after he ages out of school.

>

> Do others feel this way too?

>

> Diane S

>

>

> >

> > Congratulations, Ellen!

> >

> >

> >

> > I'd like to add a couple of thoughts to this discussion. I think I've met

> > Noah a couple of times but I surely don't really know him. So I'll

> reference

> > myself and talk a little about crisis or emergency funding.

> >

> >

> >

> > I think the words we read describing emergency or crisis funding

> eligibility

> > are " abuse, neglect, homelessness " . I think that often people think that

> > " abuse " only refers to " abuse " to the person with a disability. I'd spin

> it

> > differently. I would say clearly that was " abusing " his parents.

> We

> > would have never thought to use that word to describe out wonderful son.

> > But, if we stepped back to think about his challenging behaviors that is

> > what we were experiencing. Lord knows how much we love him, but life was

> > incredibly difficult.

> >

> >

> >

> > Sometimes I think parents like Ellen and her husband or myself and my

> > husband and most of you, we do too good a job of " keeping it together " .

> We

> > have to or we can't face the next day. And besides that in between the

> > drama, even during the drama, we love them so intensely we are still

> seeing

> > that extraordinary human being who is our child.

> >

> >

> >

> > So I'm guessing that Ellen, while being accurate, is understating Noah's

> > challenges.

> >

> >

> >

> > And another moment of philosophical meandering.. the trigger for me when

> it

> > came time to let move out was realizing that I couldn't do for him

> > what he needed to grow and learn and live a full life. We had neither the

> > time, the financial or emotional resources. So in a way, our passion and

> > devotion for him were making our home an " institution " of one as our

> ability

> > to take him out was deteriorating with his behavioral challenges. Neglect

> by

> > devotion. I could make that argument as dumb as it sounds.

> >

> >

> >

> > So as many of you have heard me say: be sure and read the cover letter

> that

> > accompanies the packet of information that goes into DHS/DD when you are

> > applying for services. Don't make stuff up. But be brutally honest and

> > clear. Make especially sure it includes the challenges your child

> > experiences and how often they occur. Be sure you explain what will

> happen

> > to your job if you don't get funding. Or whatever the challenges are in

> your

> > lives. We all hate to describe our children or our lives in the negative.

> > But, this is the moment to do it.

> >

> >

> >

> > Having said all that I'd like to share that yesterday and his

> > housemates accompanied us to church as is our habit. Afterwards I cut his

> > hair. thank goodness he looks fabulous in a buzz cut and we all had a

> brunch

> > of pancakes and eggs. His sister is home from college and we went to the

> > movies. We saw " Tangled " . Go! You'll love it. We roared.

> >

> >

> >

> > Hugs to all of you and Happy Holidays! Charlotte

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

.... and here is another side....

Today is my last day at Ray Graham Association. Yesterday we took a call that a

mother had died in her home Sunday. They found her son with intellectual

disabilities in the house with his deceased mother Wednesday. They were living

alone. There are no local relatives. Thanks to Pact and Ray Graham working

together, that young man moved into a CILA home last night, less than 24 hours

after the emergency was identified. Although it is important to keep families

with children together, it is just an important for families to do future's

planning early so that each adult can have a life of their own, and spend time

together when they chose to do so and spend time apart when they chose to do so

too.

When Beth became 16 she said to me one day ( in not so many words), mom, you use

respite to take a break from me... not I want to use respite to take a break

from you! Beth Terrill is a wise young woman.

Re: Group Home in Skokie

>

> Charlotte,

>

> You really sumed it up well, and thank you for saying those things that you

> did. It makes me feel a little less worthless as a parent. I sometimes

> catch

> myself dreaming of how " nice " it will be to come home from work at the end

> of the day to no loud vcalization noises, or tantrums, or upset siblings/

> husband because of the behaviors, and to have somewhat of a relaxing

> evening, and a good nights sleep, without being awakened at 2 or 3 am with

> loud noises, an all of which are currently a crap shoot from day to day at

> this point.

>

> However, how does one get past the guilt, or the fear that their child will

> think that you are tired of them, or putting them out? Those are my fears,

> and I have had nightmares actually that someone will do something to my

> child, and I won't know it is happening b/c my child is non verbal? My son

> is 18, and I know that my family situation will not allow me to " keep my

> child at home " for that many more years, after he ages out of school.

>

> Do others feel this way too?

>

> Diane S

>

>

> >

> > Congratulations, Ellen!

> >

> >

> >

> > I'd like to add a couple of thoughts to this discussion. I think I've met

> > Noah a couple of times but I surely don't really know him. So I'll

> reference

> > myself and talk a little about crisis or emergency funding.

> >

> >

> >

> > I think the words we read describing emergency or crisis funding

> eligibility

> > are " abuse, neglect, homelessness " . I think that often people think that

> > " abuse " only refers to " abuse " to the person with a disability. I'd spin

> it

> > differently. I would say clearly that was " abusing " his parents.

> We

> > would have never thought to use that word to describe out wonderful son.

> > But, if we stepped back to think about his challenging behaviors that is

> > what we were experiencing. Lord knows how much we love him, but life was

> > incredibly difficult.

> >

> >

> >

> > Sometimes I think parents like Ellen and her husband or myself and my

> > husband and most of you, we do too good a job of " keeping it together " .

> We

> > have to or we can't face the next day. And besides that in between the

> > drama, even during the drama, we love them so intensely we are still

> seeing

> > that extraordinary human being who is our child.

> >

> >

> >

> > So I'm guessing that Ellen, while being accurate, is understating Noah's

> > challenges.

> >

> >

> >

> > And another moment of philosophical meandering.. the trigger for me when

> it

> > came time to let move out was realizing that I couldn't do for him

> > what he needed to grow and learn and live a full life. We had neither the

> > time, the financial or emotional resources. So in a way, our passion and

> > devotion for him were making our home an " institution " of one as our

> ability

> > to take him out was deteriorating with his behavioral challenges. Neglect

> by

> > devotion. I could make that argument as dumb as it sounds.

> >

> >

> >

> > So as many of you have heard me say: be sure and read the cover letter

> that

> > accompanies the packet of information that goes into DHS/DD when you are

> > applying for services. Don't make stuff up. But be brutally honest and

> > clear. Make especially sure it includes the challenges your child

> > experiences and how often they occur. Be sure you explain what will

> happen

> > to your job if you don't get funding. Or whatever the challenges are in

> your

> > lives. We all hate to describe our children or our lives in the negative.

> > But, this is the moment to do it.

> >

> >

> >

> > Having said all that I'd like to share that yesterday and his

> > housemates accompanied us to church as is our habit. Afterwards I cut his

> > hair. thank goodness he looks fabulous in a buzz cut and we all had a

> brunch

> > of pancakes and eggs. His sister is home from college and we went to the

> > movies. We saw " Tangled " . Go! You'll love it. We roared.

> >

> >

> >

> > Hugs to all of you and Happy Holidays! Charlotte

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

, Charlotte, and all,

Thank you for your eloquent and supportive comments here about the positives

associated with getting our adult children settled into a group home or CILA

before we, the parents, completely lose it, die, get sick, crazed, etc. I agree

wholeheartedly with everything you shared, and appreciate your candor and

honesty.

Clarify something for me, though. I find myself in front of lots of parent

groups whose children are 18+, still receiving school transition services and

living at home. MANY of them believe that once their child turns 22, they will

go into an adult residential waiver, where they will go to live nearby their

families in a nice CILA that takes care of them for the rest of their lives.

The three of you seem to have achieved this scenario for your own children, and

for that I am ecstatic for you and your child. You three ladies have done more

for families in this state than most of the rest of us put together. If anyone

should get CILA placements, your family members should.

However, I tell parents whose children are not currently even in the HBCS waiver

that they should 1) be on the PUNS and 2) put out of their minds this notion

that somehow, magically, at 22 their child is going to get funded for

residential CILA. Heck, I tell them they'll be lucky to get the HBCS for

daytime programming or personal support workers! I explain that residential

funding for ICF-DDs is an entitlement, but that CILAs are not. Please tell me

if I'm giving out false information.

Isn't the reality for most of us this: Choosing between keeping our kids at

home OR moving them into an institution?

To me, that's the 'Sophie's Choice' I see in my future and in most of my

friends' futures. I wish it WAS the nice CILA several blocks away from our

home, but at the moment I don't see that happening anytime soon.

Thoughts?

Laurie

From: Ficker Terrill

Sent: Thursday, December 30, 2010 10:40 AM

IPADDUnite

Subject: RE: Re: Group Home in Skokie

Diane, I have to agree with Charlotte. Letting Beth move into her own place was

part of her growing up. Her father was very hesitant and protective, but we give

our children wings so they can soar and fly. Moving into one's own home is an

important step. No matter your disability, everyone wants a place of their

own....

Beth also comes home every Sunday. She lives about 8 blocks away and can walk

home on nice days. We have been to her home for dinner. Staff helped her with

the preparations but she was so excited to host us. Now she wants us to sleep

over...... Now, when I see Beth I am excited to catch up on her week. I am

excited to cook dinner for her and have her home as a guest. Although we still

provide supports, it is not daily. It gives everyone a different perspective.

Beth calls every week to let me know she cleaned her room. She is so proud. I

thank God every day for this opportunity for her. It is okay to be scared... we

were. But don't hold them back... let them soar and fly.... Warmly, Ficker

Terrill

From: Charlotte Cronin [mailto:fsn@...]

Sent: Thursday, December 30, 2010 10:30 AM

IPADDUnite

Subject: RE: Re: Group Home in Skokie

Diane, I have no guilt. I have fought for that boy. well, now young man,

like a tigress. I suspect you have too. Letting move out was letting

him grow up and prepare for a future without his dad and me. The result is

that we do not live a life of exhaustion and accelerating behavioral cycles.

That is a gift to .

The people in his life have the expertise to support him to extinguish

almost all of his challenging behaviors and provide him with opportunities

to learn and have fun that I just couldn't handle.

I have not abandoned . He lives ten minutes from us. He is home every

single Sunday that we are home. Occasionally we take him out in between. He

knows we adore him and I don't believe for one moment he feels abandoned. We

are incredibly involved in his group home, not just at ISPs. I know his

staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

help . some are expensive like providing new carpet. Some are not so

expensive but labor intensive like painting a room. Some are free like

offering to schedule 's trips home to coordinate with the house

schedule. I know when is unhappy. He is also non verbal. He is far

happier now than when he was living at home.

You've got to get your arms around the idea that there be more to be

" guilty " about trying to keep him at home where he may not be able to get

the supports he needs and you can't have a healthy relationship with him.

That was my eye opening moment.

Hugs. Charlotte

From: IPADDUnite <mailto:IPADDUnite%40>

[mailto:IPADDUnite <mailto:IPADDUnite%40>] On

Behalf Of swedegrl2005

Sent: Thursday, December 30, 2010 12:30 AM

IPADDUnite <mailto:IPADDUnite%40>

Subject: Re: Group Home in Skokie

Charlotte,

You really sumed it up well, and thank you for saying those things that you

did. It makes me feel a little less worthless as a parent. I sometimes catch

myself dreaming of how " nice " it will be to come home from work at the end

of the day to no loud vcalization noises, or tantrums, or upset siblings/

husband because of the behaviors, and to have somewhat of a relaxing

evening, and a good nights sleep, without being awakened at 2 or 3 am with

loud noises, an all of which are currently a crap shoot from day to day at

this point.

However, how does one get past the guilt, or the fear that their child will

think that you are tired of them, or putting them out? Those are my fears,

and I have had nightmares actually that someone will do something to my

child, and I won't know it is happening b/c my child is non verbal? My son

is 18, and I know that my family situation will not allow me to " keep my

child at home " for that many more years, after he ages out of school.

Do others feel this way too?

Diane S

>

> Congratulations, Ellen!

>

>

>

> I'd like to add a couple of thoughts to this discussion. I think I've met

> Noah a couple of times but I surely don't really know him. So I'll

reference

> myself and talk a little about crisis or emergency funding.

>

>

>

> I think the words we read describing emergency or crisis funding

eligibility

> are " abuse, neglect, homelessness " . I think that often people think that

> " abuse " only refers to " abuse " to the person with a disability. I'd spin

it

> differently. I would say clearly that was " abusing " his parents. We

> would have never thought to use that word to describe out wonderful son.

> But, if we stepped back to think about his challenging behaviors that is

> what we were experiencing. Lord knows how much we love him, but life was

> incredibly difficult.

>

>

>

> Sometimes I think parents like Ellen and her husband or myself and my

> husband and most of you, we do too good a job of " keeping it together " . We

> have to or we can't face the next day. And besides that in between the

> drama, even during the drama, we love them so intensely we are still

seeing

> that extraordinary human being who is our child.

>

>

>

> So I'm guessing that Ellen, while being accurate, is understating Noah's

> challenges.

>

>

>

> And another moment of philosophical meandering.. the trigger for me when

it

> came time to let move out was realizing that I couldn't do for him

> what he needed to grow and learn and live a full life. We had neither the

> time, the financial or emotional resources. So in a way, our passion and

> devotion for him were making our home an " institution " of one as our

ability

> to take him out was deteriorating with his behavioral challenges. Neglect

by

> devotion. I could make that argument as dumb as it sounds.

>

>

>

> So as many of you have heard me say: be sure and read the cover letter

that

> accompanies the packet of information that goes into DHS/DD when you are

> applying for services. Don't make stuff up. But be brutally honest and

> clear. Make especially sure it includes the challenges your child

> experiences and how often they occur. Be sure you explain what will happen

> to your job if you don't get funding. Or whatever the challenges are in

your

> lives. We all hate to describe our children or our lives in the negative.

> But, this is the moment to do it.

>

>

>

> Having said all that I'd like to share that yesterday and his

> housemates accompanied us to church as is our habit. Afterwards I cut his

> hair. thank goodness he looks fabulous in a buzz cut and we all had a

brunch

> of pancakes and eggs. His sister is home from college and we went to the

> movies. We saw " Tangled " . Go! You'll love it. We roared.

>

>

>

> Hugs to all of you and Happy Holidays! Charlotte

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Living in Illinois does not give us many options.  My son will not be able to

live alone and they tell me the only openings are for emergency placements

(thank God we have some of those still).  There is the Monarch Living options

for those who may be able to live on their own some day, but what is there for

those who will not be able to live on their own?  We have Home Based Services

and I work on things like Money, Time, reading sight words, a little cooking and

simple things that he  has not been able to grasp in 29 years but he is getting

a little out of. 

He does not want to move out but if he could try it for a few days or a weekend,

it may change his mind.  He would have to have someone there 24/7 just to guide

him, read for him, time management, money and he has a part time job he loves

and has had for 9 years to get him to and from. 

We are only in our 50's so we can handle him and he doesn't have behavior issues

so we are pretty lucky and love having him home.  We sign him up for activities

and do things with him but is this the best he can have?  I know we all have

our own issues and all of our loved ones are different but I wish there were

more options.  I love it when I hear of success stories of other parents.  So

please keep sharing.  Happy New Year to you all.  Shirley

 

>

>

> Diane, I have no guilt. I have fought for that boy. well, now young man,

> like a tigress. I suspect you have too. Letting move out was letting

> him grow up and prepare for a future without his dad and me. The result is

> that we do not live a life of exhaustion and accelerating behavioral

> cycles.

> That is a gift to .

>

> The people in his life have the expertise to support him to extinguish

> almost all of his challenging behaviors and provide him with opportunities

> to learn and have fun that I just couldn't handle.

>

> I have not abandoned . He lives ten minutes from us. He is home every

> single Sunday that we are home. Occasionally we take him out in between. He

> knows we adore him and I don't believe for one moment he feels abandoned.

> We

> are incredibly involved in his group home, not just at ISPs. I know his

> staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

> help . some are expensive like providing new carpet. Some are not so

> expensive but labor intensive like painting a room. Some are free like

> offering to schedule 's trips home to coordinate with the house

> schedule. I know when is unhappy. He is also non verbal. He is far

> happier now than when he was living at home.

>

> You've got to get your arms around the idea that there be more to be

> " guilty " about trying to keep him at home where he may not be able to get

> the supports he needs and you can't have a healthy relationship with him.

> That was my eye opening moment.

>

> Hugs. Charlotte

>

> From: IPADDUnite <IPADDUnite%40> [mailto:

> IPADDUnite <IPADDUnite%40>] On

> Behalf Of swedegrl2005

> Sent: Thursday, December 30, 2010 12:30 AM

> IPADDUnite <IPADDUnite%40>

> Subject: Re: Group Home in Skokie

>

> Charlotte,

>

> You really sumed it up well, and thank you for saying those things that you

> did. It makes me feel a little less worthless as a parent. I sometimes

> catch

> myself dreaming of how " nice " it will be to come home from work at the end

> of the day to no loud vcalization noises, or tantrums, or upset siblings/

> husband because of the behaviors, and to have somewhat of a relaxing

> evening, and a good nights sleep, without being awakened at 2 or 3 am with

> loud noises, an all of which are currently a crap shoot from day to day at

> this point.

>

> However, how does one get past the guilt, or the fear that their child will

> think that you are tired of them, or putting them out? Those are my fears,

> and I have had nightmares actually that someone will do something to my

> child, and I won't know it is happening b/c my child is non verbal? My son

> is 18, and I know that my family situation will not allow me to " keep my

> child at home " for that many more years, after he ages out of school.

>

> Do others feel this way too?

>

> Diane S

>

>

> >

> > Congratulations, Ellen!

> >

> >

> >

> > I'd like to add a couple of thoughts to this discussion. I think I've met

> > Noah a couple of times but I surely don't really know him. So I'll

> reference

> > myself and talk a little about crisis or emergency funding.

> >

> >

> >

> > I think the words we read describing emergency or crisis funding

> eligibility

> > are " abuse, neglect, homelessness " . I think that often people think that

> > " abuse " only refers to " abuse " to the person with a disability. I'd spin

> it

> > differently. I would say clearly that was " abusing " his parents.

> We

> > would have never thought to use that word to describe out wonderful son.

> > But, if we stepped back to think about his challenging behaviors that is

> > what we were experiencing. Lord knows how much we love him, but life was

> > incredibly difficult.

> >

> >

> >

> > Sometimes I think parents like Ellen and her husband or myself and my

> > husband and most of you, we do too good a job of " keeping it together " .

> We

> > have to or we can't face the next day. And besides that in between the

> > drama, even during the drama, we love them so intensely we are still

> seeing

> > that extraordinary human being who is our child.

> >

> >

> >

> > So I'm guessing that Ellen, while being accurate, is understating Noah's

> > challenges.

> >

> >

> >

> > And another moment of philosophical meandering.. the trigger for me when

> it

> > came time to let move out was realizing that I couldn't do for him

> > what he needed to grow and learn and live a full life. We had neither the

> > time, the financial or emotional resources. So in a way, our passion and

> > devotion for him were making our home an " institution " of one as our

> ability

> > to take him out was deteriorating with his behavioral challenges. Neglect

> by

> > devotion. I could make that argument as dumb as it sounds.

> >

> >

> >

> > So as many of you have heard me say: be sure and read the cover letter

> that

> > accompanies the packet of information that goes into DHS/DD when you are

> > applying for services. Don't make stuff up. But be brutally honest and

> > clear. Make especially sure it includes the challenges your child

> > experiences and how often they occur. Be sure you explain what will

> happen

> > to your job if you don't get funding. Or whatever the challenges are in

> your

> > lives. We all hate to describe our children or our lives in the negative.

> > But, this is the moment to do it.

> >

> >

> >

> > Having said all that I'd like to share that yesterday and his

> > housemates accompanied us to church as is our habit. Afterwards I cut his

> > hair. thank goodness he looks fabulous in a buzz cut and we all had a

> brunch

> > of pancakes and eggs. His sister is home from college and we went to the

> > movies. We saw " Tangled " . Go! You'll love it. We roared.

> >

> >

> >

> > Hugs to all of you and Happy Holidays! Charlotte

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Laurie, I think you are spot on. so while I want parents to feel good about

the opportunity when it appears, the reality is that funding is desperately

scarce. That is why I spend so much time fighting for not only QUALITY but

MORE services. AND why we must motivate those parents to fight with us.

Thanks for making this so incredibly clear.

Charlotte

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of Jerue Family

Sent: Thursday, December 30, 2010 11:15 AM

IPADDUnite

Subject: Re: Re: Group Home in Skokie

, Charlotte, and all,

Thank you for your eloquent and supportive comments here about the positives

associated with getting our adult children settled into a group home or CILA

before we, the parents, completely lose it, die, get sick, crazed, etc. I

agree wholeheartedly with everything you shared, and appreciate your candor

and honesty.

Clarify something for me, though. I find myself in front of lots of parent

groups whose children are 18+, still receiving school transition services

and living at home. MANY of them believe that once their child turns 22,

they will go into an adult residential waiver, where they will go to live

nearby their families in a nice CILA that takes care of them for the rest of

their lives. The three of you seem to have achieved this scenario for your

own children, and for that I am ecstatic for you and your child. You three

ladies have done more for families in this state than most of the rest of us

put together. If anyone should get CILA placements, your family members

should.

However, I tell parents whose children are not currently even in the HBCS

waiver that they should 1) be on the PUNS and 2) put out of their minds this

notion that somehow, magically, at 22 their child is going to get funded for

residential CILA. Heck, I tell them they'll be lucky to get the HBCS for

daytime programming or personal support workers! I explain that residential

funding for ICF-DDs is an entitlement, but that CILAs are not. Please tell

me if I'm giving out false information.

Isn't the reality for most of us this: Choosing between keeping our kids at

home OR moving them into an institution?

To me, that's the 'Sophie's Choice' I see in my future and in most of my

friends' futures. I wish it WAS the nice CILA several blocks away from our

home, but at the moment I don't see that happening anytime soon.

Thoughts?

Laurie

From: Ficker Terrill

Sent: Thursday, December 30, 2010 10:40 AM

IPADDUnite <mailto:IPADDUnite%40>

Subject: RE: Re: Group Home in Skokie

Diane, I have to agree with Charlotte. Letting Beth move into her own place

was part of her growing up. Her father was very hesitant and protective, but

we give our children wings so they can soar and fly. Moving into one's own

home is an important step. No matter your disability, everyone wants a place

of their own....

Beth also comes home every Sunday. She lives about 8 blocks away and can

walk home on nice days. We have been to her home for dinner. Staff helped

her with the preparations but she was so excited to host us. Now she wants

us to sleep over...... Now, when I see Beth I am excited to catch up on her

week. I am excited to cook dinner for her and have her home as a guest.

Although we still provide supports, it is not daily. It gives everyone a

different perspective. Beth calls every week to let me know she cleaned her

room. She is so proud. I thank God every day for this opportunity for her.

It is okay to be scared... we were. But don't hold them back... let them

soar and fly.... Warmly, Ficker Terrill

From: Charlotte Cronin [mailto:fsn@...

<mailto:fsn%40familysupportnetwork.org> ]

Sent: Thursday, December 30, 2010 10:30 AM

IPADDUnite <mailto:IPADDUnite%40>

Subject: RE: Re: Group Home in Skokie

Diane, I have no guilt. I have fought for that boy. well, now young man,

like a tigress. I suspect you have too. Letting move out was letting

him grow up and prepare for a future without his dad and me. The result is

that we do not live a life of exhaustion and accelerating behavioral cycles.

That is a gift to .

The people in his life have the expertise to support him to extinguish

almost all of his challenging behaviors and provide him with opportunities

to learn and have fun that I just couldn't handle.

I have not abandoned . He lives ten minutes from us. He is home every

single Sunday that we are home. Occasionally we take him out in between. He

knows we adore him and I don't believe for one moment he feels abandoned. We

are incredibly involved in his group home, not just at ISPs. I know his

staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

help . some are expensive like providing new carpet. Some are not so

expensive but labor intensive like painting a room. Some are free like

offering to schedule 's trips home to coordinate with the house

schedule. I know when is unhappy. He is also non verbal. He is far

happier now than when he was living at home.

You've got to get your arms around the idea that there be more to be

" guilty " about trying to keep him at home where he may not be able to get

the supports he needs and you can't have a healthy relationship with him.

That was my eye opening moment.

Hugs. Charlotte

From: IPADDUnite <mailto:IPADDUnite%40>

<mailto:IPADDUnite%40> [mailto:IPADDUnite

<mailto:IPADDUnite%40> <mailto:IPADDUnite%40>]

On

Behalf Of swedegrl2005

Sent: Thursday, December 30, 2010 12:30 AM

IPADDUnite <mailto:IPADDUnite%40>

<mailto:IPADDUnite%40>

Subject: Re: Group Home in Skokie

Charlotte,

You really sumed it up well, and thank you for saying those things that you

did. It makes me feel a little less worthless as a parent. I sometimes catch

myself dreaming of how " nice " it will be to come home from work at the end

of the day to no loud vcalization noises, or tantrums, or upset siblings/

husband because of the behaviors, and to have somewhat of a relaxing

evening, and a good nights sleep, without being awakened at 2 or 3 am with

loud noises, an all of which are currently a crap shoot from day to day at

this point.

However, how does one get past the guilt, or the fear that their child will

think that you are tired of them, or putting them out? Those are my fears,

and I have had nightmares actually that someone will do something to my

child, and I won't know it is happening b/c my child is non verbal? My son

is 18, and I know that my family situation will not allow me to " keep my

child at home " for that many more years, after he ages out of school.

Do others feel this way too?

Diane S

>

> Congratulations, Ellen!

>

>

>

> I'd like to add a couple of thoughts to this discussion. I think I've met

> Noah a couple of times but I surely don't really know him. So I'll

reference

> myself and talk a little about crisis or emergency funding.

>

>

>

> I think the words we read describing emergency or crisis funding

eligibility

> are " abuse, neglect, homelessness " . I think that often people think that

> " abuse " only refers to " abuse " to the person with a disability. I'd spin

it

> differently. I would say clearly that was " abusing " his parents. We

> would have never thought to use that word to describe out wonderful son.

> But, if we stepped back to think about his challenging behaviors that is

> what we were experiencing. Lord knows how much we love him, but life was

> incredibly difficult.

>

>

>

> Sometimes I think parents like Ellen and her husband or myself and my

> husband and most of you, we do too good a job of " keeping it together " . We

> have to or we can't face the next day. And besides that in between the

> drama, even during the drama, we love them so intensely we are still

seeing

> that extraordinary human being who is our child.

>

>

>

> So I'm guessing that Ellen, while being accurate, is understating Noah's

> challenges.

>

>

>

> And another moment of philosophical meandering.. the trigger for me when

it

> came time to let move out was realizing that I couldn't do for him

> what he needed to grow and learn and live a full life. We had neither the

> time, the financial or emotional resources. So in a way, our passion and

> devotion for him were making our home an " institution " of one as our

ability

> to take him out was deteriorating with his behavioral challenges. Neglect

by

> devotion. I could make that argument as dumb as it sounds.

>

>

>

> So as many of you have heard me say: be sure and read the cover letter

that

> accompanies the packet of information that goes into DHS/DD when you are

> applying for services. Don't make stuff up. But be brutally honest and

> clear. Make especially sure it includes the challenges your child

> experiences and how often they occur. Be sure you explain what will happen

> to your job if you don't get funding. Or whatever the challenges are in

your

> lives. We all hate to describe our children or our lives in the negative.

> But, this is the moment to do it.

>

>

>

> Having said all that I'd like to share that yesterday and his

> housemates accompanied us to church as is our habit. Afterwards I cut his

> hair. thank goodness he looks fabulous in a buzz cut and we all had a

brunch

> of pancakes and eggs. His sister is home from college and we went to the

> movies. We saw " Tangled " . Go! You'll love it. We roared.

>

>

>

> Hugs to all of you and Happy Holidays! Charlotte

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

What a wonderful story. Thank you and the powers the be at PACT for helping

that young man in crisis. We'll all be keeping him in our prayers. It's a

nightmare many of us share, I'm sure, that we would die suddenly and our

children find us. Can't even imagine his confusion and sorrow at being in the

same house as his dead mom for three days.

Your Beth is indeed a wise woman. I don't admit this often, but when was

little (before we really understood she had autism) we used the time-out

strategy whenever she got into meltdown mode -- timeout was ' go to your

room and close the door. You need a timeout'. Flip side was there were many

days when Mom would also get stressed out over the autism behaviors, and my

inability to figure out what the hell to do about it, and I would start losing

it. Yelling at her, etc. There was a day I will always remember when I

actually reached out and hit her. Not a good day. Anyway, she looked right at

me and said (swear to god) 'Mom time out'. She was crying. I ran into the

bathroom (closest room with a door), shut the door, and sobbed for what seemed

like forever, maybe it was 5-10 minutes. From that day on, when I'd feel myself

getting close to 'losing it' with her again, I'd stop, look at her, and say 'Mom

needs a time out' and go shut myself into a room with a closed door until I got

control over my emotions. So the timeouts worked better for me than for !

I was also fortunate enough to get respite (thanks to you, CFT) and just

recently, again thanks to CFT, was awarded Home Based. I'm not sure where we'd

be right now without those supports. Probably I'd still be locked in my

bathroom!

, you've given so much to so many people here in Dupage and nearby counties

through the years. I hope you'll stay in touch with us in your semi-retirement.

Illinois still needs your voice, your energy and passion. Thanks for all that

you do.

Happy New Year and peace for us all,

Laurie

From: Ficker Terrill

Sent: Thursday, December 30, 2010 10:54 AM

IPADDUnite

Subject: RE: Re: Group Home in Skokie

.... and here is another side....

Today is my last day at Ray Graham Association. Yesterday we took a call that a

mother had died in her home Sunday. They found her son with intellectual

disabilities in the house with his deceased mother Wednesday. They were living

alone. There are no local relatives. Thanks to Pact and Ray Graham working

together, that young man moved into a CILA home last night, less than 24 hours

after the emergency was identified. Although it is important to keep families

with children together, it is just an important for families to do future's

planning early so that each adult can have a life of their own, and spend time

together when they chose to do so and spend time apart when they chose to do so

too.

When Beth became 16 she said to me one day ( in not so many words), mom, you use

respite to take a break from me... not I want to use respite to take a break

from you! Beth Terrill is a wise young woman.

Re: Group Home in Skokie

>

> Charlotte,

>

> You really sumed it up well, and thank you for saying those things that you

> did. It makes me feel a little less worthless as a parent. I sometimes

> catch

> myself dreaming of how " nice " it will be to come home from work at the end

> of the day to no loud vcalization noises, or tantrums, or upset siblings/

> husband because of the behaviors, and to have somewhat of a relaxing

> evening, and a good nights sleep, without being awakened at 2 or 3 am with

> loud noises, an all of which are currently a crap shoot from day to day at

> this point.

>

> However, how does one get past the guilt, or the fear that their child will

> think that you are tired of them, or putting them out? Those are my fears,

> and I have had nightmares actually that someone will do something to my

> child, and I won't know it is happening b/c my child is non verbal? My son

> is 18, and I know that my family situation will not allow me to " keep my

> child at home " for that many more years, after he ages out of school.

>

> Do others feel this way too?

>

> Diane S

>

>

> >

> > Congratulations, Ellen!

> >

> >

> >

> > I'd like to add a couple of thoughts to this discussion. I think I've met

> > Noah a couple of times but I surely don't really know him. So I'll

> reference

> > myself and talk a little about crisis or emergency funding.

> >

> >

> >

> > I think the words we read describing emergency or crisis funding

> eligibility

> > are " abuse, neglect, homelessness " . I think that often people think that

> > " abuse " only refers to " abuse " to the person with a disability. I'd spin

> it

> > differently. I would say clearly that was " abusing " his parents.

> We

> > would have never thought to use that word to describe out wonderful son.

> > But, if we stepped back to think about his challenging behaviors that is

> > what we were experiencing. Lord knows how much we love him, but life was

> > incredibly difficult.

> >

> >

> >

> > Sometimes I think parents like Ellen and her husband or myself and my

> > husband and most of you, we do too good a job of " keeping it together " .

> We

> > have to or we can't face the next day. And besides that in between the

> > drama, even during the drama, we love them so intensely we are still

> seeing

> > that extraordinary human being who is our child.

> >

> >

> >

> > So I'm guessing that Ellen, while being accurate, is understating Noah's

> > challenges.

> >

> >

> >

> > And another moment of philosophical meandering.. the trigger for me when

> it

> > came time to let move out was realizing that I couldn't do for him

> > what he needed to grow and learn and live a full life. We had neither the

> > time, the financial or emotional resources. So in a way, our passion and

> > devotion for him were making our home an " institution " of one as our

> ability

> > to take him out was deteriorating with his behavioral challenges. Neglect

> by

> > devotion. I could make that argument as dumb as it sounds.

> >

> >

> >

> > So as many of you have heard me say: be sure and read the cover letter

> that

> > accompanies the packet of information that goes into DHS/DD when you are

> > applying for services. Don't make stuff up. But be brutally honest and

> > clear. Make especially sure it includes the challenges your child

> > experiences and how often they occur. Be sure you explain what will

> happen

> > to your job if you don't get funding. Or whatever the challenges are in

> your

> > lives. We all hate to describe our children or our lives in the negative.

> > But, this is the moment to do it.

> >

> >

> >

> > Having said all that I'd like to share that yesterday and his

> > housemates accompanied us to church as is our habit. Afterwards I cut his

> > hair. thank goodness he looks fabulous in a buzz cut and we all had a

> brunch

> > of pancakes and eggs. His sister is home from college and we went to the

> > movies. We saw " Tangled " . Go! You'll love it. We roared.

> >

> >

> >

> > Hugs to all of you and Happy Holidays! Charlotte

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

A friend of mine who works with an agency serving those w/DD says the same thing

about the huge transition for those who live at home with Mom & Dad until they

die. " Now this individual is adjusting to living in a different setting, with

totally new people, while mourning the loss of the last parent. It is hard. "

-Gail

________________________________

From: Kulczyk <advocate4kids@...>

IPADDUnite

Sent: Thu, December 30, 2010 10:43:48 AM

Subject: Re: Re: Group Home in Skokie

And here's the other side of it. My parents kept my brother at home with

them until one of them died and the other was completely disabled. The move

was traumatic for him. It was beyond traumatic; it was horrific.

There was no one to deal with staff or adjustment problems. There was no

one to help him acclimate. It was not his worst nightmare, since the place

where he lives is actually VERY nice, but it could have been handled better

when my parents were alive to support him during the adjustment.

Did his outbursts shorten their lives? I have no doubt that they did. Did

his controlling and threatening behaviors impair their ability to have a

good quality of life during their later years? Indubitably. What they

perceived as kindness and self-sacrifice was a BAD decision, but it was the

best they could do, given their own issues with guilt and money.

All this is more than I really wanted to share, but it seemed important to

let you know what can happen. I know there are risks in residential

placements, but it is safer for your child to be placed successfully while

you are alive than to gamble on what will happen when there is no one to

speak for him.

Jean

On Thu, Dec 30, 2010 at 10:30 AM, Charlotte Cronin <

fsn@...> wrote:

>

>

> Diane, I have no guilt. I have fought for that boy. well, now young man,

> like a tigress. I suspect you have too. Letting move out was letting

> him grow up and prepare for a future without his dad and me. The result is

> that we do not live a life of exhaustion and accelerating behavioral

> cycles.

> That is a gift to .

>

> The people in his life have the expertise to support him to extinguish

> almost all of his challenging behaviors and provide him with opportunities

> to learn and have fun that I just couldn't handle.

>

> I have not abandoned . He lives ten minutes from us. He is home every

> single Sunday that we are home. Occasionally we take him out in between. He

> knows we adore him and I don't believe for one moment he feels abandoned.

> We

> are incredibly involved in his group home, not just at ISPs. I know his

> staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

> help . some are expensive like providing new carpet. Some are not so

> expensive but labor intensive like painting a room. Some are free like

> offering to schedule 's trips home to coordinate with the house

> schedule. I know when is unhappy. He is also non verbal. He is far

> happier now than when he was living at home.

>

> You've got to get your arms around the idea that there be more to be

> " guilty " about trying to keep him at home where he may not be able to get

> the supports he needs and you can't have a healthy relationship with him.

> That was my eye opening moment.

>

> Hugs. Charlotte

>

> From: IPADDUnite <IPADDUnite%40> [mailto:

> IPADDUnite <IPADDUnite%40>] On

> Behalf Of swedegrl2005

> Sent: Thursday, December 30, 2010 12:30 AM

> IPADDUnite <IPADDUnite%40>

> Subject: Re: Group Home in Skokie

>

> Charlotte,

>

> You really sumed it up well, and thank you for saying those things that you

> did. It makes me feel a little less worthless as a parent. I sometimes

> catch

> myself dreaming of how " nice " it will be to come home from work at the end

> of the day to no loud vcalization noises, or tantrums, or upset siblings/

> husband because of the behaviors, and to have somewhat of a relaxing

> evening, and a good nights sleep, without being awakened at 2 or 3 am with

> loud noises, an all of which are currently a crap shoot from day to day at

> this point.

>

> However, how does one get past the guilt, or the fear that their child will

> think that you are tired of them, or putting them out? Those are my fears,

> and I have had nightmares actually that someone will do something to my

> child, and I won't know it is happening b/c my child is non verbal? My son

> is 18, and I know that my family situation will not allow me to " keep my

> child at home " for that many more years, after he ages out of school.

>

> Do others feel this way too?

>

> Diane S

>

>

> >

> > Congratulations, Ellen!

> >

> >

> >

> > I'd like to add a couple of thoughts to this discussion. I think I've met

> > Noah a couple of times but I surely don't really know him. So I'll

> reference

> > myself and talk a little about crisis or emergency funding.

> >

> >

> >

> > I think the words we read describing emergency or crisis funding

> eligibility

> > are " abuse, neglect, homelessness " . I think that often people think that

> > " abuse " only refers to " abuse " to the person with a disability. I'd spin

> it

> > differently. I would say clearly that was " abusing " his parents.

> We

> > would have never thought to use that word to describe out wonderful son.

> > But, if we stepped back to think about his challenging behaviors that is

> > what we were experiencing. Lord knows how much we love him, but life was

> > incredibly difficult.

> >

> >

> >

> > Sometimes I think parents like Ellen and her husband or myself and my

> > husband and most of you, we do too good a job of " keeping it together " .

> We

> > have to or we can't face the next day. And besides that in between the

> > drama, even during the drama, we love them so intensely we are still

> seeing

> > that extraordinary human being who is our child.

> >

> >

> >

> > So I'm guessing that Ellen, while being accurate, is understating Noah's

> > challenges.

> >

> >

> >

> > And another moment of philosophical meandering.. the trigger for me when

> it

> > came time to let move out was realizing that I couldn't do for him

> > what he needed to grow and learn and live a full life. We had neither the

> > time, the financial or emotional resources. So in a way, our passion and

> > devotion for him were making our home an " institution " of one as our

> ability

> > to take him out was deteriorating with his behavioral challenges. Neglect

> by

> > devotion. I could make that argument as dumb as it sounds.

> >

> >

> >

> > So as many of you have heard me say: be sure and read the cover letter

> that

> > accompanies the packet of information that goes into DHS/DD when you are

> > applying for services. Don't make stuff up. But be brutally honest and

> > clear. Make especially sure it includes the challenges your child

> > experiences and how often they occur. Be sure you explain what will

> happen

> > to your job if you don't get funding. Or whatever the challenges are in

> your

> > lives. We all hate to describe our children or our lives in the negative.

> > But, this is the moment to do it.

> >

> >

> >

> > Having said all that I'd like to share that yesterday and his

> > housemates accompanied us to church as is our habit. Afterwards I cut his

> > hair. thank goodness he looks fabulous in a buzz cut and we all had a

> brunch

> > of pancakes and eggs. His sister is home from college and we went to the

> > movies. We saw " Tangled " . Go! You'll love it. We roared.

> >

> >

> >

> > Hugs to all of you and Happy Holidays! Charlotte

> >

> >

> >

> >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I love the comment 'tomorrow is another year'. But I also like to see that my

child exhibits behaviors like another. Shane is also using a video camera to

capture utube things that he is interested and will watch it all day long...

trying not to stim when I look at him. There are just the things he needs to

do. On Christmas Eve in church an older woman grabbed my arm and told me I

should be ashamed that I let him play video games in church. Well he was

watching his video and participated in the prayers and the standing and sitting

as asked. I told her he was autistic and this was a level we had only reached

recently. I have spent many years with him unable to handle a service so I am

proud of where he has come. He attends sunday school, is confirmed and makes it

through a service.

As far as home my husband spends a fair amount of time annoying Shane so the

feelings are mutual.

Re: Group Home in Skokie

How do you all do it? How do you keep it together when your child is being

belligerent without losing it yourself? What do you do when all your adult child

wants to do is to be in bed, or be cooped up in his room almost all day? Or when

not in their room, driving you bonkers with their overly obnoxious behaviors (in

this case stuttering, (on purpose) talking incessently, obsessing over certain

songs.....ALL DAY LONG.

just saw his pyschiatrist this past week, but he doesn't seem to be much

help. We're basically just using him to get med refills anyway. He did suggest a

place to try, but we've done enough of trying different meds.

He's still having some depression that he had when he was in the facility & at

the workshop; though that's mom diagnosed.

We were hoping that he would adjust to the facility that he'd been in; but he

never did. Having him in a DT program & a 16 bed facility are NOT what's going

to work for him. Having him at home isn't really working for him or us. though I

won't ever convince my hubby of that....He says does good during the day

when I'm not home, but I can tell that's not totally true; as doesn't even

know I'm home sometimes & he's totally annoying his dad.

I'm having to take away privleges away from just to get him out of the

house. Had him out today to see an Elvis Impersonator that he used to love to go

to. Of course, it was a BIG struggle to get him there, but he had lots of fun &

WAS GOOD when we were there. (He likes to relive things with his tape recorder

or camcorder.)

Came home, went to his room to listen to his tape, struggled to get him out to

eat, once he ate, back to his bed & refused to come out. Of course, he'll now be

up at 5 a.m. tomorrow.

Not wanting to bathe, brush his teeth, wear anything but pj's.

Most of the time, I think I'm the one with the problem, as I want so much more

for him. I want him to be more independent, I want him to do chores without the

constant arguements, I'd like him to do things other than lay around all day in

bed.

He is wanting to do his braille reading to school grade classes & he is

scheduled to do that Tuesday at a school. Hopefully will get him plugged into

more places once the holidays are over & since I have more help at work.

Well, tomorrow is another year.

Wishing the rest of you a good New Year.

Liz

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I need to provide a laugh in the middle of all this very appropriately serious

conversation. I was thinking about this posting during church this morning.

So I’m going to tell you a deep dark secret. I sometimes play Hearts on my

cell phone during the sermon. Now you all have to promise not to tell ANYBODY.

Charlotte

From: IPADDUnite [mailto:IPADDUnite ] On Behalf

Of Klippert

Sent: Friday, December 31, 2010 9:34 PM

IPADDUnite

Subject: Re: Re: Group Home in Skokie

I love the comment 'tomorrow is another year'. But I also like to see that my

child exhibits behaviors like another. Shane is also using a video camera to

capture utube things that he is interested and will watch it all day long...

trying not to stim when I look at him. There are just the things he needs to do.

On Christmas Eve in church an older woman grabbed my arm and told me I should be

ashamed that I let him play video games in church. Well he was watching his

video and participated in the prayers and the standing and sitting as asked. I

told her he was autistic and this was a level we had only reached recently. I

have spent many years with him unable to handle a service so I am proud of where

he has come. He attends sunday school, is confirmed and makes it through a

service.

As far as home my husband spends a fair amount of time annoying Shane so the

feelings are mutual.

Re: Group Home in Skokie

How do you all do it? How do you keep it together when your child is being

belligerent without losing it yourself? What do you do when all your adult child

wants to do is to be in bed, or be cooped up in his room almost all day? Or when

not in their room, driving you bonkers with their overly obnoxious behaviors (in

this case stuttering, (on purpose) talking incessently, obsessing over certain

songs.....ALL DAY LONG.

just saw his pyschiatrist this past week, but he doesn't seem to be much

help. We're basically just using him to get med refills anyway. He did suggest a

place to try, but we've done enough of trying different meds.

He's still having some depression that he had when he was in the facility & at

the workshop; though that's mom diagnosed.

We were hoping that he would adjust to the facility that he'd been in; but he

never did. Having him in a DT program & a 16 bed facility are NOT what's going

to work for him. Having him at home isn't really working for him or us. though I

won't ever convince my hubby of that....He says does good during the day

when I'm not home, but I can tell that's not totally true; as doesn't even

know I'm home sometimes & he's totally annoying his dad.

I'm having to take away privleges away from just to get him out of the

house. Had him out today to see an Elvis Impersonator that he used to love to go

to. Of course, it was a BIG struggle to get him there, but he had lots of fun &

WAS GOOD when we were there. (He likes to relive things with his tape recorder

or camcorder.)

Came home, went to his room to listen to his tape, struggled to get him out to

eat, once he ate, back to his bed & refused to come out. Of course, he'll now be

up at 5 a.m. tomorrow.

Not wanting to bathe, brush his teeth, wear anything but pj's.

Most of the time, I think I'm the one with the problem, as I want so much more

for him. I want him to be more independent, I want him to do chores without the

constant arguements, I'd like him to do things other than lay around all day in

bed.

He is wanting to do his braille reading to school grade classes & he is

scheduled to do that Tuesday at a school. Hopefully will get him plugged into

more places once the holidays are over & since I have more help at work.

Well, tomorrow is another year.

Wishing the rest of you a good New Year.

Liz

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Diane,

This is a belated, but heartfelt response, to your feelings about finding a

place outside your home for your son.  My son is 26, verbal, on the autism

spectrum and began his 4th year in an apartment in ton.  It was the right

decision for him. 

It's clear from your email that you want to do what is best for your son.  My

son's transition may was probably as emotional for me as for him.  I missed him

a lot initially.  Some bittersweet and wonderful moments were when he declined

invitations to come here for Sunday dinner.  The good news being that he has a

life separate from his parents!:)

Three reasons I believe this major transition is necessary --- Our sons and

daughters have much to learn that they won't learn at home.  Sometimes when

he's

over at our house, I'll start to do something, and Jonathon will say " I can do

that myself. "   And we need to help the caregivers/support people learn how best

to communicate and support our adult kids, because  we know a lot about what

does and doesn't work with them.    And some guidance/teaching our son will

accept so much better from his tutors who are closer to his age. 

It won't be perfect.  There have been times when my son asked why he " has to

live " in an apt, missing home.  My answer surprised me, but is true:  he has

emotional learning/growth to do as well as learning about housekeeping and

grocery shopping.  I've said and believe that he must learn to be strong

emotionally, to know that his parents will love him and be his family, even when

he's not under this roof.  There are also many times he expresses pride at

being

independent.  He likes telling people about his neighborhood, etc.

I know there are ways you show your son your love that he understands, things

you can continue to do when he's in a different living situation.  Ellen, in

an

earlier email, said she plans to visit and check on how it's going for her son.

  That's very wise; being a presence with staff is important.

My son is supported by a great ton non-profit I've mentioned before:  the

Center for Independent Futures (www.independentfutures.com).  They really get

it.  One thing we did before Jonathon moved into an apt, was use CIF's

independent living readiness inventory.  It's not the kind of assessment that

involves some cut-off, i.e., ready or not ready to live in an apartment. 

Rather

it gives one a good picture of skills that need to be gained.  I had spent a

lot

of time worrying about what my son didn't know how to do.  But I had to smile

and even laugh when I heard that his CIF skills tutors could show him how to

clean a bathroom!!:)  

I've seen a lot of IPADD emails about microboards and cooperatives and am not

sure if people forming those are working to create housing options.  CIF can be

an excellent resource for families wanting to create community housing options

and family partnerships.   If you or anyone wants to learn about their

services,

you can call  Margaret Tannenberg at CIF:  847.328.2044).

I wish you the best in your planning for your son.  We'll always be loving

parents, wherever our 'kids' live. 

Sincerely,

Bonnie

 

________________________________

From: Ficker Terrill <cathyfickerterrill@...>

" IPADDUnite " <IPADDUnite >

Sent: Thu, December 30, 2010 10:40:47 AM

Subject: RE: Re: Group Home in Skokie

 

Diane, I have to agree with Charlotte. Letting Beth move into her own place was

part of her growing up. Her father was very hesitant and protective, but we give

our children wings so they can soar and fly. Moving into one's own home is an

important step. No matter your disability, everyone wants a place of their

own....

Beth also comes home every Sunday. She lives about 8 blocks away and can walk

home on nice days. We have been to her home for dinner. Staff helped her with

the preparations but she was so excited to host us. Now she wants us to sleep

over...... Now, when I see Beth I am excited to catch up on her week. I am

excited to cook dinner for her and have her home as a guest. Although we still

provide supports, it is not daily. It gives everyone a different perspective.

Beth calls every week to let me know she cleaned her room. She is so proud. I

thank God every day for this opportunity for her. It is okay to be scared... we

were. But don't hold them back... let them soar and fly.... Warmly, Ficker

Terrill

From: Charlotte Cronin [mailto:fsn@...]

Sent: Thursday, December 30, 2010 10:30 AM

IPADDUnite

Subject: RE: Re: Group Home in Skokie

Diane, I have no guilt. I have fought for that boy. well, now young man,

like a tigress. I suspect you have too. Letting move out was letting

him grow up and prepare for a future without his dad and me. The result is

that we do not live a life of exhaustion and accelerating behavioral cycles.

That is a gift to .

The people in his life have the expertise to support him to extinguish

almost all of his challenging behaviors and provide him with opportunities

to learn and have fun that I just couldn't handle.

I have not abandoned . He lives ten minutes from us. He is home every

single Sunday that we are home. Occasionally we take him out in between. He

knows we adore him and I don't believe for one moment he feels abandoned. We

are incredibly involved in his group home, not just at ISPs. I know his

staff well. They tell me " stuff " . Mike and I keep our eyes open for ways to

help . some are expensive like providing new carpet. Some are not so

expensive but labor intensive like painting a room. Some are free like

offering to schedule 's trips home to coordinate with the house

schedule. I know when is unhappy. He is also non verbal. He is far

happier now than when he was living at home.

You've got to get your arms around the idea that there be more to be

" guilty " about trying to keep him at home where he may not be able to get

the supports he needs and you can't have a healthy relationship with him.

That was my eye opening moment.

Hugs. Charlotte

From: IPADDUnite <mailto:IPADDUnite%40>

[mailto:IPADDUnite <mailto:IPADDUnite%40>] On

Behalf Of swedegrl2005

Sent: Thursday, December 30, 2010 12:30 AM

IPADDUnite <mailto:IPADDUnite%40>

Subject: Re: Group Home in Skokie

Charlotte,

You really sumed it up well, and thank you for saying those things that you

did. It makes me feel a little less worthless as a parent. I sometimes catch

myself dreaming of how " nice " it will be to come home from work at the end

of the day to no loud vcalization noises, or tantrums, or upset siblings/

husband because of the behaviors, and to have somewhat of a relaxing

evening, and a good nights sleep, without being awakened at 2 or 3 am with

loud noises, an all of which are currently a crap shoot from day to day at

this point.

However, how does one get past the guilt, or the fear that their child will

think that you are tired of them, or putting them out? Those are my fears,

and I have had nightmares actually that someone will do something to my

child, and I won't know it is happening b/c my child is non verbal? My son

is 18, and I know that my family situation will not allow me to " keep my

child at home " for that many more years, after he ages out of school.

Do others feel this way too?

Diane S

>

> Congratulations, Ellen!

>

>

>

> I'd like to add a couple of thoughts to this discussion. I think I've met

> Noah a couple of times but I surely don't really know him. So I'll

reference

> myself and talk a little about crisis or emergency funding.

>

>

>

> I think the words we read describing emergency or crisis funding

eligibility

> are " abuse, neglect, homelessness " . I think that often people think that

> " abuse " only refers to " abuse " to the person with a disability. I'd spin

it

> differently. I would say clearly that was " abusing " his parents. We

> would have never thought to use that word to describe out wonderful son.

> But, if we stepped back to think about his challenging behaviors that is

> what we were experiencing. Lord knows how much we love him, but life was

> incredibly difficult.

>

>

>

> Sometimes I think parents like Ellen and her husband or myself and my

> husband and most of you, we do too good a job of " keeping it together " . We

> have to or we can't face the next day. And besides that in between the

> drama, even during the drama, we love them so intensely we are still

seeing

> that extraordinary human being who is our child.

>

>

>

> So I'm guessing that Ellen, while being accurate, is understating Noah's

> challenges.

>

>

>

> And another moment of philosophical meandering.. the trigger for me when

it

> came time to let move out was realizing that I couldn't do for him

> what he needed to grow and learn and live a full life. We had neither the

> time, the financial or emotional resources. So in a way, our passion and

> devotion for him were making our home an " institution " of one as our

ability

> to take him out was deteriorating with his behavioral challenges. Neglect

by

> devotion. I could make that argument as dumb as it sounds.

>

>

>

> So as many of you have heard me say: be sure and read the cover letter

that

> accompanies the packet of information that goes into DHS/DD when you are

> applying for services. Don't make stuff up. But be brutally honest and

> clear. Make especially sure it includes the challenges your child

> experiences and how often they occur. Be sure you explain what will happen

> to your job if you don't get funding. Or whatever the challenges are in

your

> lives. We all hate to describe our children or our lives in the negative.

> But, this is the moment to do it.

>

>

>

> Having said all that I'd like to share that yesterday and his

> housemates accompanied us to church as is our habit. Afterwards I cut his

> hair. thank goodness he looks fabulous in a buzz cut and we all had a

brunch

> of pancakes and eggs. His sister is home from college and we went to the

> movies. We saw " Tangled " . Go! You'll love it. We roared.

>

>

>

> Hugs to all of you and Happy Holidays! Charlotte

>

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Congratulations! This , in my humble opinion, should be the gold standard.

's story may be one many of us would like to replicate. Would you be

willing to discuss the How To of getting the Cila designation? What does

that offer in terms of funding. Is it similar to Home Based? I can

get so far in figuring this all out and then I get stuck on paying property

taxes. There have been many ideas talked about including purchasing the

real estate, it is the on going costs that stump me. Or does the real

estate be tax exempt because it is owned by a micro board, ie not for

profit.

I would also be curious to know what 's independent skills grew to

after he moved out? Perhaps parents can learn a lot from your experience

in allowing development during the growing up process.

Thank you for sharing a very positive story.

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
 Share
Go to topic listing
×
×
  • Create New...