Re: Re: Alternative Housing/WI

[Guest guest]

Hi ~

I'm assuming you meant Dane County, WI? I am in Walworth County.

My son is 12, and we have had the same battle with finding respite workers too

- we were basically told by the agency (society's assets) that unless we found

our own person for them to hire to do respite for us, they don't seek out or

find people who are willing to do cares for our son. I find this so ridiculous,

because they are supposed to HELP us.

Anyhow, the best respite/relief that we have found is the Easter Seals Respite

camp in Wisconsin Dells. We send Dylan for a week each summer and a weekend

session in the spring as well. They have a one on one aide & there is a nurse

there 24/7. They have been WONDERFUL. I am actually okay leaving him there,

and I'm the kind of person who is okay with leaving Dylan anywhere, unless it's

grandma's house. In fact this morning I was coordinating that he attend this

year with another student he goes to school with.

There is a variety of ages who attend, from younger kids up to adults.

Their number is or email is respite1@... Val is

the camp director and great - if you talk to her feel free to mention that I

passed the number on. We visited for a day during the summer prior to sending

him.... to check it out. They were very accommodating to us.

Anyway, for what it's worth I thought I'd share what we do with you.

Good luck!

Becky

mom to Dylan, 12, down syndrome, type 1 diabetes & autism

jsricc wrote:

Might I enquire where you get these wonderful respite providers? In

working with the Respite Care program through FSRC, and although it

took us 10 years to get off their waiting list, they have rarely sent

us a person who I would trust to walk my dog. Also, they have always

and insistantly complained about where we lived, which is on the

outskirts of Dane County, but is also a depressed income area, where

if advertised for, they would have an abundance of workers. It is

hard for me to believe that someone, anyone, would not be willing to

sit on my couch for 8 hours, make a pizza, and check on Ben's pulse

for $12 an hour, but that is the impression I am continually given.

I don't look for workers through them any more, but rely on the

kindness of neighbors. Also, my husband and I signed up and went

through the training to be 'Respite Care Providers' several years

ago, wanting to do care within our home, offering pick-up and drop-

off, and have never gotten one inquiry. I find this impossible to

believe, because no one has offered this to us, and I would take them

up on it in a heartbeat. I'm never sure who is telling the truth

anymore.

>

> > Sara - I've pulled up Camp Hill website and am doing some

reading and

> > have joined the alternative housing group . Thanks for the

> > information. If I could keep Ben with me and be assured I would

> > outlive him, I probably would, because I am like a mother bear

with

> > her cub when it comes to him. If someone looks at him the wrong

way

> > I'm ready to strike and then my feelings get hurt for him and I

want

> > to cry. I am not anxious to drop him off on a doorstep - BUT -

every

> > time I get into a car alone with my husband, all I can think about

> > is, " What if we don't make if home? What will become of him? Who

> > will love him & care for him like I do? " He is VERY attached to

me.

> > He wants me to do everything with him and for him. He constantly

> > sings to me and tells me he loves me. We are joined at the hip and

> > it's not good for either one of us. He needs peers and so do I,

and

> > I would be SO much more at peace if I knew that if I were to

suddenly

> > cease to exist, he was in a happy, familiar, comfortable place.

Ben

> > has a sister a year older and a brother a year younger. They are

> > both WONDERFUL, well-spoken, successful, college educated

creatures

> > who are possibly two of the most self-centered people I have ever

met

> > in my life. I believe this is a symptom of this generation. I had

a

> > melt-down on Ben's birthday because neither of them had taken any

> > initiative to do anything special for him. They both called me to

> > see what I had planned that they might drop in and participate

for a

> > few moments between their own social engagements. After all, the

> > Packer's were in the play-offs that day so Ben's birthday was

> > somewhere down the list for them. I ended up giving a speech which

> > resulted in them coming to take Ben out for lunch and shopping,

all

> > the while giving me the 'Crazy Menopause Mom' look and telling me

> > to 'just relax', which are fighting words for me. While they were

> > gone with Ben, I told my husband that I doubted either of our kids

> > knew how to change a vacuum cleaner bag, so we should probably put

> > Ben somewhere safe, sooner rather than later. My husband looks at

me

> > like I'm crazy too - he probably doesn't even know what a vacuum

> > cleaner is.

> >

> > Stacey - I just wanted you to know that I too got the " He's not

> > Autistic, he's just a spoiled-rotten DS boy resulting from

> > inconsistent parenting " speech. I can still remember the exit

> > meeting from early childhood to grade school. They brought in the

> > school psychologist (who didn't know Ben at all) and he stood up

in

> > front of the group and announced, " Mr & Mrs Blahhh, your son is

> > severly, profoundly retarded and my recommendation is that you

> > institutionalize him before you become any more attached because

he's

> > only going to deteriorate " . I sobbed as if I'd just been informed

of

> > his death. I mourned for the son I was supposed to have. And then,

> > I just became completely, severely and profoundly pi**ed off! It

was

> > the most mean-spirited thing anyone could have said to me. I still

> > run in to the guy 20 years later, usually stuffing his pie-hole

in a

> > restaurant with a briefcase on the table. We don't speak. I'm sure

> > he's planning his next attack. ANYWAY - Ben is just about as sharp

> > as he can be. Yes, the Autism has definitly hindered his ability

to

> > communicate appropriately and his behavior can be less than

stellar

> > at times, but he is SOOO much more than I ever hoped for him. The

> > Autism used to paralize him. Now it just manifests itself in

> > annoying little ticks. Always plan for the best. Any other

attitude

> > is pointless.

> >

> > Someone mentioned in an earlier post about their child liking

round,

> > jolly, hairy men - the Santa type. Ditto with Ben, the hairier the

> > merrier. He bowls with the YMCA adaptive program on Saturday

> > mornings. Lots of young adults with DS in this program. Everyone's

> > behavior is pretty consistent. These kids are all good at shaking

> > hands and keeping good physical control. Ben can also approach

> > anyone, reach out his hand to shake, and as soon as he gets ahold

of

> > someone's paw he kisses it or pulls them in for a hug. This is the

> > Autism to me...control...controL...contrOL...contROL...NO

CONTROL!!!

> >

> >

> >

>

>

>

> --

> Sara - Life is a journey- we choose the path.

>

>

>