Re: Alternative Housing

[Guest guest]

Elie is 22, so a little younger than Ben. Since age 15 we have sent him

away to overnite camp, nite at a respite provider, had respite providers in

- all so that I could survive and so Elie would be comfortable living with

someone other than us.

We have 6 childrenand as you say - all have lives of their own which do not

include having a brother with significant deficits living with them. Also,

they are spread out around the country. 2 are tobe guardians when we are

not able. They will oversee what ever arrangements we make. And they do

ask periodically what our plans are.

In learning about CAMPHILL, also look up anthroposophy and Rudolph Steiner.

Be sure that you understand the underpinnings of the life there. On the

positive side: I have visited 2 sites - one in PA and one in Scotland. No

place have I heard of any kind of abuse or neglect. I was impressed at the

feeling of the villages and the sense of community. For Elie it is NOT the

right place - the homes are too busy and people filled for him, but I wanted

to live there until I studied anthroposophy. Too much different religion

for me (my eldest son who is semi evangelical(???))) calls it artsy fartsy

religion, but to me it is just too much.

Finding a cohousing community might be the answer for some people. We

certainly thoughts so for a number of years.

My current choice, which I am working towards, is finding a host family

where we could begin to mesh lives and then gradually pull away to being

visiting relatives. Elie would love to leave us, but visit us. HE wants to

live somewhere else.

> 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.