Comments on: Empty Nest Envy

By: Kristina Chew, PhD

Kristina Chew, PhD — Sat, 20 Dec 2008 15:23:25 +0000

thanks, Regan—-@halfrabbit, that is something that has not, till now, occurred to me—-that Charlie won’t see eye to eye with us about choices of where to live and all.

By: Regan

Regan — Sat, 20 Dec 2008 10:40:13 +0000

Sorry,
Future Planning
Autism Society of America

By: Regan

Regan — Sat, 20 Dec 2008 10:37:59 +0000

Autism Society of America The Origins of Person-Centered Planning

By: halfrabbit

halfrabbit — Sat, 20 Dec 2008 04:08:57 +0000

A very interesting study and I’ll look forward to reading it in full when I get a chance.

I wonder if a life planner is something like the case manager I’ve just got. Everything stopped due to Christmas, but the new year will hopefully be a lot better than the last few due to a few different services. Maybe I will even think about leaving the nest with a group home or independent living, though Mum still seems to want to keep me.

By: lurker

lurker — Fri, 19 Dec 2008 17:27:47 +0000

Since when is there not enough money for both discovering causes and cures and for supports? Who with any stake in this issue likes the idea of appropriating money away from cures, considering cures would obviate supports in the future?

I’m sick of how those who want cure research to be halted, make themselves out to be so great for pushing for providing of subsistence through services, while the lack of a cure would confine those receiving services to permanent dependence on others’ help and to a very limited set of activities to enjoy. What kind of a citizen is someone being relegated to be under such deprived conditions?

By: Phil Schwarz

Phil Schwarz — Fri, 19 Dec 2008 05:12:52 +0000

This is why we “evil neurodiverse” push for a redistribution of funding away from the chase of causation and “cures”, towards the building of support for adult living: housing and household management, postsecondary education and vocational training, employment, and living in the community as consumer and citizen.
I think those concerns should be common ground between us and other segments of the “autism community”.

By: mayfly

mayfly — Fri, 19 Dec 2008 04:34:48 +0000

The Easter Seals study mentions “life planners”. I was completely ignorant of the existence of such people.

Conservatorship for our daughter is something my wife and I will probably need to deal with.

By: Momof3

Momof3 — Fri, 19 Dec 2008 02:38:34 +0000

This is something I think about far too often, particularly since my daughter is a late in life child, and her siblings are in high school and college. All of the friends we made as our children were growing up are enjoying the freedom of the empty/emptying nest. Most of them don’t quite get the severity of our daughter’s situation — not that I would have if I were them — but it is such a disconnect. Everyone assumes there will be programs/housing/job for her when the time comes — and in my more hopeful moments I also think things will improve for autistic adults. Based on what I have dealt with so far, however, I know that it is most likely up to us to make it happen, and I find it incredibly daunting. I was very scared to read about the young man from Massachusetts and his parents struggling, since I had always assumed my state was better than most in this regard.

Love your blog and your perspective — you encourage my better angels and help me enjoy the good moments.