Empty Nest Envy
December 18, 2008 by Kristina Chew, PhD
Filed under Health
It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:
While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.
The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.
Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”
The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?
Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.
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.
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.
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”.
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?
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.
<a href=”Future Planning “
Autism Society of America
The Origins of Person-Centered Planning
Sorry,
Future Planning
Autism Society of America
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.