How do we wind down? (Cat)

[Guest guest]

Cat- I *do* have friends who have children with DS (only) who are now

capable young adults who do some ritualistic behaviors after work- more of

a winding down, but it seems ot be absolutely *necessary* that they do

this. One young woman of 23 has to lock herself in her room with her

stereo blasting for about half an hour after work. If she is disturbed

before then she falls apart.

I hear often of teens with DS who are fully included in school and having

the kinds of successes that we hear about who do things like flip Barbies

for quite a while after school (their pony tails swing so nicely!) or wave

papers in a particular motion. These behaviors are confined to bedroom or

TV room, but they do seem to offer a release of pent up energy or

frustration. Parents talk about giving their kids some time and space to

do these relaxing kinds of things. Of course, many people do something to

unwind as we make our way home from work- it's just a difference of *what*.

(Have a drink, sing along with the stereo blasting, a burst of gardening,

etc.)

I do understand that for Alysha, these behaviors are new. That is where a

medical exam should hopefully yield some answers for her.

I have heard over time of kids with DS who do some of these more

obsessive-compulsive type things (for example, closing doors and drawers,

having people cross their legs, etc. These are kids with DS NOT dx'ed with

" anything else " .)

Two adults that I know of who have gone through major adult depression

actually did much better when they moved into supported living

arrangements. Glenn Vetter, who along with Joan was the impetus for this

list, had a similar situation with his own son. At 16 or so was

extremely depressed and withdrawn. Glenn and his family did everything

they could, and responded better when he moved into a group home.

Another young man (whose family had a history of depression) made

wonderfful progress when he moved into a supported apartment and got a job.

He was in his 20's.

I think that it would be worth exploring with family members of other

adults as well as this list. (IMO.) There has been a lot of activity on

the " regular " DS list lately pertaining to adults with DS. I think that

you will get some possible assistance there as well. Do you belong to that

list? I would be glad to get that info and post it here.

I think this list has lots of empathy and help for challenging behaviors,

but the realm of adult -onset behavior changes is not something that has

come up here before your posts. There are some members (I don't know how

many more than a few, unless there are many who have been lurking). I hope

other parents of adults will contact you, at least privately. It must feel

so awful to see your daughter change before your eyes.

Beth, Mum to Ben, age 10