ROLL CALL

[Guest guest]

OK, I'll sign in. I'm Rick, dad to Jan who is almost 35. I've been

around since this list began and even before that. I'm dealing with

adult outcomes and with passing some of my experiences to those not so

far along.

All of our kids are individuals and mine is no different. At 35, she

has her own apartment where she lives on her own with a little ILS and

parent help. She has two different day activities. Two days a week she

is in a " workshop " which I regard a social with peers like herself and

where she gets classes and sometimes a little work when their jobs.

Three days a week she works as a volunteer with another day program

dealing with people more handicapped than herself. As a volunteer she

is able to work one one one with individuals, something that the paid

staffing levels don't allow. In a little less than a year, she has

established a very positive relationship, particularly with one of the

more difficult clients. Both the agency and the young man's parents

have indicated real appreciation for what she does.

Today, we are together in Utah with friends, including the kids next

door that she grew up with. She is skiing again for the first time

since her recovery from AML via a bone marrow transport. It was cold

and snowy, but the skiing is coming back. She and I went out with her

brother (bone marrow donor) and his wife this morning. We came in cold

and tired for lunch, but she was the one who wanted to go back out after

lunch, so she and I did. Again it was cold and very windy, and most of

the morning's crowd had gone home. Skiing is coming back. We will be

on higher level trails tomorrow if the weather is better.

Jan is financially independent. Her quality of life is high, as just

surveyed by the state in a QC initiative. She has social security,

medicare, medicaid, and HUD section 8 support for her housing. She has

transportation for $3 a ride to get to her workshop and her volunteer

job is (long) walking distance.

Our forward focus is now on getting things stabilized as she ages and if

she loses her parent support team. Our current focus is on a bunch of

issues, many of them related to healthy living. She buys in, but it is

difficult as it is for many people in this country.

In my posts, you will find me often questioning the standard view and

outcome (inclusion is always best and a paid job is the primary aim).

These are often right, but our kids are individuals and not some

standard item just because they have ds. We need to try to look at

their needs as best as we can through their eyes and not through our

preceptions of success for them.

I also report on Jan, both her successes and issues.

I am married to for nearly 40 years and have two sons, one older

and one younger than Jan.

Rick