Today's meeting

[Guest guest]

Well, we've been having lapses in Jan's ILS (Independent Living Skills)

support and also ben having a few issues with Jan's pushing the limits

on things we'd all agreed to. Yes, Jan does push the limits, just like

any teen, except she isn't a teen any more.

This week was hard because the current ILS person didn't set up Jan's

rides. She missed out on her Monday program and it was pretty tacky on

Tuesday with further problems today that did get ironed out in time.

Jan pays for her rides, but no one has patiently taught her how to set

them up for herself. She is getting better, though, because yesterday

she called the transportation people to complain about a missed ride on

her own. That was landmark since neither her Mom nor I were anywhere around.

We met with Jan's advocate and mentor (the head of the agency's adult

programs) and with the manager of the ILS program. It went really

well. After nearly a half hour of discussion Jan was asked if she would

be willing to have a trial with a brand new ILS counselor who had

inquired about possibly working with Jan. Jan's response was an

enthusiastic affirmative. I have to love her for her willingness to

accept change.

Jan was the one who brought up " cutting corners " on the rules we'd set

up. Yes, she and I talked about it before the meeting and she wanted it

to come up so that it she'd get help dealing with strict rules.

At the end I asked the agency people to think about a program for the

relatively small number of young women they have at Jan's peer level. I

personally know two others, but am sure that there are at least a

handful more. I am looking for something that builds socialization

outside of the agency and has a program that includes classes and social

activities for our kids. They all have at least some volunteer or paid

job activities but none are full time. Follow-up will be a discussion

at our next monthly meeting.

Life is good. When I sit back and look at the regular population, I

come to think that Jan has arrived in life where her quality of life is

at least equal and perhaps better than if her handicapped had been

cured. If her DS had been cured, she might be the mother of a number of

kids and homeless on the street after a marriage gone wrong.

In the community of adults with DS, I observe that most are living happy

lives, proud of their accomplishments, perhaps more happy than many of

their NDA peers.

Rick .. dad to 35 year old Jan