Re: WOW! Such powerful stories...let's put them to good use...

[Guest guest]

I, too, am blown away. This is IPADDU at its best. Thanks to all of you for

contributing and responding.

I want you all to know that the FSN is organizing over 20 visits to freshman

state Representatives and Senators over the next two or three months. In the

process I have tried to put together simple, understandable information for

them. Our goal is to provide them with a framework to understand disability

issues in Illinois and to set ourselves up as " go to " resources for them as

they grow in their jobs to represent us.

This information would be valuable to any of your legislators, new or not. I

would be happy to share. However, I would like a chance to review it with

you before you visit them.

If you are interested, let me know.

Charlotte fsn@...

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of ELLEN BRONFELD

Sent: Friday, December 31, 2010 9:56 AM

IPADDUnite

Subject: WOW! Such powerful stories...let's put them to good

use...

Hi all:

I was completely blown away by the postings I read today on IPADDU.

Thank you to those who shared very powerful family stories. I know it isn't

always easy to share those stories.

It is imperative that we each take our stories to our local legislators.

PLEASE DO SO IN EARLY 2011! Your legislators need to know what you and your

family are going through and they need to know NOW!!! Very important budget

decisions are going to be made this month. Make a call on Monday...either

make an appointment or chat on the phone if need be, with a follow up email

or fax (depending on what your legislator prefers) with more details if

necessary...This is exactly what we need to be doing to move the system

forward. We need our loved ones to be recognized as a priority in Illinois.

At the very least, we need our legislators to know that balancing the budget

on the backs of our loved ones is so very wrong. Charlotte has information

and talking points on the Family Support Network

website...http://www.familysupportnetwork.org/

Happy, healthy and prosperous New Year to all...

Ellen

Ellen Garber Bronfeld

egskb@... <mailto:egskb%40sbcglobal.net>

[Guest guest]

I'd like to add a little more of my brother's story. His placement was

possible because my parents left money in a trust, NOT because of the

largess of the state. Dan lives in a retirement home, not a group home.

In the beginning, I thought it was a good situation because he stayed in the

community in which he had always lived and because local people who know him

could visit him there. Many of the residents had known our parents. Dan is

loud because of his disability. The people who lived there were hearing

impaired because of their age. Dan had always lived with my parents, so he

knew how to get along with older people, as much as he gets along with

anyone.

Now he is one of the older people. His health and behavior have

deteriorated with age, but the people where he lives have proven to be

amazingly tolerant.

My concern is that the money in his trust is not infinite. Within the next

few years, he will have to move to a facility which accepts Public Aid.

Finding the right place for him was tricky, because he MUST have a private

room, both for his sake and the sake of those who must live with him. I

found a place. It is in the middle of nowhere, but I think Dan will have a

fairly good quality of life there. He is no longer able to go out into the

community.

If we had been forced to rely on the state for funding, I doubt that Dan

would be alive now. He is 70 years old, and has only grown more irascible

with age. Mellowing is not in his vocabulary. The medications that would

have been necessary to make him docile would not have been conducive to his

prolonged survival or his quality of life.

There are lessons to be learned, but I'm not sure what they are. Make

plans? Move out if IL? Start a special needs trust?

Do not wait until you are dead or disabled to institute change? I'm not

sure. I AM sure that planning to kill yourself and your disabled child is a

terrible idea, and it is even worse to discuss these plans with you

non-disabled child. I KNOW about that last one.

And now you know even more about me, and about my brother. I am offering

you personal information in hopes that it will help you and your children.

Jean

On Fri, Dec 31, 2010 at 10:42 AM, Charlotte Cronin <

fsn@...> wrote:

>

>

> I, too, am blown away. This is IPADDU at its best. Thanks to all of you for

> contributing and responding.

>

> I want you all to know that the FSN is organizing over 20 visits to

> freshman

> state Representatives and Senators over the next two or three months. In

> the

> process I have tried to put together simple, understandable information for

> them. Our goal is to provide them with a framework to understand disability

> issues in Illinois and to set ourselves up as " go to " resources for them as

> they grow in their jobs to represent us.

>

> This information would be valuable to any of your legislators, new or not.

> I

> would be happy to share. However, I would like a chance to review it with

> you before you visit them.

>

> If you are interested, let me know.

>

> Charlotte fsn@... <fsn%40familysupportnetwork.org>

>

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

> IPADDUnite <IPADDUnite%40>] On

> Behalf Of ELLEN BRONFELD

> Sent: Friday, December 31, 2010 9:56 AM

> IPADDUnite <IPADDUnite%40>

> Subject: WOW! Such powerful stories...let's put them to good

> use...

>

>

> Hi all:

> I was completely blown away by the postings I read today on IPADDU.

> Thank you to those who shared very powerful family stories. I know it isn't

> always easy to share those stories.

> It is imperative that we each take our stories to our local legislators.

> PLEASE DO SO IN EARLY 2011! Your legislators need to know what you and your

> family are going through and they need to know NOW!!! Very important budget

> decisions are going to be made this month. Make a call on Monday...either

> make an appointment or chat on the phone if need be, with a follow up email

> or fax (depending on what your legislator prefers) with more details if

> necessary...This is exactly what we need to be doing to move the system

> forward. We need our loved ones to be recognized as a priority in Illinois.

> At the very least, we need our legislators to know that balancing the

> budget

> on the backs of our loved ones is so very wrong. Charlotte has information

> and talking points on the Family Support Network

> website...http://www.familysupportnetwork.org/

> Happy, healthy and prosperous New Year to all...

> Ellen

>

> Ellen Garber Bronfeld

> egskb@... <egskb%40sbcglobal.net>

<mailto:egskb%40sbcglobal.net<egskb%2540sbcglobal.net>>

>

>

>

[Guest guest]

This was in the Sun Times today. Very timely.

Marie

At the crossroads with a disabled son

Maudlyne Ihejirika mihejirika@... Dec 31, 2010 02:35AM

I choked it back — that thing that wells up in your throat, threatening to

unlock tear ducts, as I came across a Sun-Times column I wrote 15 years ago,

about my 5-year-old son beginning the equivalent of kindergarten — the

equivalent, because he was diagnosed with cerebral palsy at the time.

" It's a perspective that finds triumph in the trivial and miracles in the

mundane, once you get past the anger, the what-went-wrongs and the why-me's, "

I'd written about raising , a child with delayed development and mild

retardation. When he was 14, his disability was discovered actually to be Sotos

syndrome, a rare genetic disorder characterized by aspects of cerebral palsy and

autism, macrocephaly and epilepsy, heart, kidney and speech defects.

He's 20 now, and like every family like ours, we're at a crossroads, the one

where caregivers must decide whether they can continue to care for a loved one

at home or yield to ever-encroaching realities.

Reality 1: An adult child is more difficult to lift, bathe and otherwise care

for as your own body ages. Let's face it, you're older and weaker.

Reality 2: You won't be around forever. You'd like to think you will, and that

no one can care for that child like you do. But as you approach 50, dying before

him is now a possibility.

Reality 3: If you don't ensure a good home for him, who will care for him when

you're gone? Do you burden another family member — your own sibling or the

child's sibling?

That thing's starting to well up again as I reach the midway point of that 1995

column. I wrote of how my son " and I found help in so many seemingly selfless

folks at schools, hospitals and nonprofit organizations, and they were all with

me in spirit that first morning as my son headed for kindergarten. "

I thanked the village of the old African proverb that got me through his first

five years. That village remained active for the next 15.

My son can continue to attend Park School for the severely disabled, where he

finds unconditional love and support, until his 22nd birthday. Then comes the

dilemma that faces families like mine in every corner of Illinois — home to 1.3

to 1.5 million disabled people, or 10 to 12 percent of the population age 5 and

over.

In Illinois, 275,000 to 325,000 people — 2.5 percent of the population — are

incapable of performing the activities of daily living.

Options for families like mine are the large, state-run or private institutions

where they've traditionally received care — or preferably the smaller, but fewer

and harder-to-get-into community housing settings.

In Illinois — ranked 51st among states and the District of Columbia in funding

programs for the disabled — a first step to accessing residential placement and

day services is getting on a state list and waiting. Only 68 percent of families

on that list are funded.

When your case comes up, you feel your way through the forest of care

facilities, trusting God will lead you to the one where he won't be abused;

where he can access the full quality of life his abilities warrant; where he'll

find a new extended family and be happy enough not to miss you terribly.

I can't hold back that thing anymore, and the ducts now flood as I read the end

of that '95 column. There, long ago, in thanking the folks my son and I met

early in our journey, I found the reminder that I needed today.

I wrote: " Their lasting gift to me is the realization, however slow in coming,

that you must decide what counts, find acceptance within, know that the Lord

never gives you more than you can handle, and remember that no matter your

burden, by some measure, you're blessed. "

My son and I are at the crossroads. But there's still plenty of time.

Maudlyne Ihejirika is a Chicago Sun-Times staff reporter. To read her 1995

column about her son, go to suntimes.com/news/otherviews.

[Guest guest]

My turn to say 'wow'. Thanks for posting this. My only gripe would be the part

about 'the Lord only giving you as much as you can handle'...all we have to do

is remember the mom who stuffed her daughter into a trash bag and smothered her,

or the one who drove her car off the bridge...these good people, apparently, HAD

been 'given' more than they could handle.

Other than that part, though, this woman is an eloquent writer and a columnist

at the Sun-Times. Do we know her???? If not, we should get to know her, don't

you think?

Add it to the list!

I'll invite her to join IPADD.

L.

From: teteme55

Sent: Friday, December 31, 2010 1:22 PM

IPADDUnite

Subject: Re: WOW! Such powerful stories...let's put them to good

use...

This was in the Sun Times today. Very timely.

Marie

At the crossroads with a disabled son

Maudlyne Ihejirika mihejirika@... Dec 31, 2010 02:35AM

I choked it back - that thing that wells up in your throat, threatening to

unlock tear ducts, as I came across a Sun-Times column I wrote 15 years ago,

about my 5-year-old son beginning the equivalent of kindergarten - the

equivalent, because he was diagnosed with cerebral palsy at the time.

" It's a perspective that finds triumph in the trivial and miracles in the

mundane, once you get past the anger, the what-went-wrongs and the why-me's, "

I'd written about raising , a child with delayed development and mild

retardation. When he was 14, his disability was discovered actually to be Sotos

syndrome, a rare genetic disorder characterized by aspects of cerebral palsy and

autism, macrocephaly and epilepsy, heart, kidney and speech defects.

He's 20 now, and like every family like ours, we're at a crossroads, the one

where caregivers must decide whether they can continue to care for a loved one

at home or yield to ever-encroaching realities.

Reality 1: An adult child is more difficult to lift, bathe and otherwise care

for as your own body ages. Let's face it, you're older and weaker.

Reality 2: You won't be around forever. You'd like to think you will, and that

no one can care for that child like you do. But as you approach 50, dying before

him is now a possibility.

Reality 3: If you don't ensure a good home for him, who will care for him when

you're gone? Do you burden another family member - your own sibling or the

child's sibling?

That thing's starting to well up again as I reach the midway point of that 1995

column. I wrote of how my son " and I found help in so many seemingly selfless

folks at schools, hospitals and nonprofit organizations, and they were all with

me in spirit that first morning as my son headed for kindergarten. "

I thanked the village of the old African proverb that got me through his first

five years. That village remained active for the next 15.

My son can continue to attend Park School for the severely disabled, where he

finds unconditional love and support, until his 22nd birthday. Then comes the

dilemma that faces families like mine in every corner of Illinois - home to 1.3

to 1.5 million disabled people, or 10 to 12 percent of the population age 5 and

over.

In Illinois, 275,000 to 325,000 people - 2.5 percent of the population - are

incapable of performing the activities of daily living.

Options for families like mine are the large, state-run or private institutions

where they've traditionally received care - or preferably the smaller, but fewer

and harder-to-get-into community housing settings.

In Illinois - ranked 51st among states and the District of Columbia in funding

programs for the disabled - a first step to accessing residential placement and

day services is getting on a state list and waiting. Only 68 percent of families

on that list are funded.

When your case comes up, you feel your way through the forest of care

facilities, trusting God will lead you to the one where he won't be abused;

where he can access the full quality of life his abilities warrant; where he'll

find a new extended family and be happy enough not to miss you terribly.

I can't hold back that thing anymore, and the ducts now flood as I read the end

of that '95 column. There, long ago, in thanking the folks my son and I met

early in our journey, I found the reminder that I needed today.

I wrote: " Their lasting gift to me is the realization, however slow in coming,

that you must decide what counts, find acceptance within, know that the Lord

never gives you more than you can handle, and remember that no matter your

burden, by some measure, you're blessed. "

My son and I are at the crossroads. But there's still plenty of time.

Maudlyne Ihejirika is a Chicago Sun-Times staff reporter. To read her 1995

column about her son, go to suntimes.com/news/otherviews.

[Guest guest]

Please invite her--that was my thought. She's in our age range, too. It never

hurts to have someone like her among us.

I have had folks tell me God must really think I can handle a lot---I just

repeat the quote by Mother -- " I know God won't give me anything I can't

handle. I just wish He didn't trust me so much. " Shuts 'em right up! LOL!

Does anyone know her?

Marie

" Their lasting gift to me is the realization, however slow in coming,

that you must decide what counts, find acceptance within, know that the Lord

never gives you more than you can handle, and remember that no matter your

burden, by some measure, you're blessed. "

>

> My son and I are at the crossroads. But there's still plenty of time.

>

> Maudlyne Ihejirika is a Chicago Sun-Times staff reporter. To read her 1995

column about her son, go to suntimes.com/news/otherviews.

>

>

>

>

>

>