Jean//Louise/Sherry

[Guest guest]

<<I guess I just dislike when people have narrow thoughts about group

homes and preconceived predjudices for parents of a 15 year old and

what we should probably be thinking about for our disabled son.>>

Hi, Everyone......Just getting caught up here but wanted to comment on a few

things.

Jean....I have been told that if we buy a small home with 2-3 bedrooms for

Gareth, the State would provide staff to help out. I would love for him to

have others like him living with him....not as a requirement, but because his

best friend now is another DS kid. His other 'buddy' is a girl in a

wheelchair. Like Sara said, many people group together because of their likes

(religion, polititcs, ethnic) and I see no difference for Gareth. I don't

find it

offensive at all. A home in a community with normal families around would be

enough integration for me.

If one talks to any lawyer, they will tell you NOT to expect your normal

kids to take care of disabled siblings.....the underling resentment may manifest

it's ugly head years down the road. Also, we all want to believe that our

normal kids are as loving and compassionate as we are, but when they have all

the money and are suppose to share and take care of their disabled

siblings.....well.....once again, the reality MAY occur that they don't care to

take on

that responsibility. If a normal sibling has all the money and marries a

'money hungry/high maintenance' individual....do you think that person is going

to care about your child? If a normal sibling has all the money and runs

into financial/medical issues of their own, where do you think the money will

go

first? The best route is to plan for your child's future yourself....housing

and money wise....and then, pray that your normal siblings will remain in

their lives for support......without the guilt of " HAVE TO " be there. Does

that make sense?

<<But I thought I heard lately that age does not matter for a woman to pass

on DS.>>

....a woman CAN NOT pass down DS. It occurs spontaneously after

conception. Technically, a woman at age 18 can have a DS child just as easily

as a

woman over 35.

<<Andy always gets a chuckle out of how far we drove to go to the first (and

last at this point) picnic there in PA. I have such fond memories

of that picnic>>

Louise...I am ready to host another if families are ready. I would be our

home by summertime and State College is right off of RT 80 in central Pa. If

I could convince the Lifelinks teacher to get involved, then we could have

plenty of 'mentors' to help with the kids......assuming there are any here

through the summer months. Also, SC has more than one hotel for people to

choose

from!!! As for the conference, I am still thinking about it. Maybe, DH

could get me a ticket from his frequent flyer acct.

Amber....sorry to hear about your daughter's seizures. If they happen so

quickly, it's quite possible that all of our kids have them and we never know.

I know that Gareth use to get that 'unresponsive, zoned out, far off look'

but I never suspected seizures. Haven't seen any in years, though. The

problem is he wouldn't know if he had one to tell anyone about it.

Sherry....I printed that off and told my sister to RUN it to her DH's

doctors. He was dx'd in Dec with AD. I am all for giving something a shot one

time.....especially with something like AD. Gareth has never had a TNF drawn

that

I know of. It's an interesting idea, though.

Take care, Everyone.

Margaret

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