In our nearly two-decades-old, small, local meet-up group of moms with sons and daughters who have disAbilities, (plus a dad or two, and a few friends who work on behalf of our community,) we call her the queen. Not just any queen, but the Queen Mother. Or, since she's opposed to the use of caps: queen mother. Our group is The Mothers from Hell (and Friends). I wrote about us here.
holly lu connant rees is referred to as the queen mother for many reasons, not the least of these is her leadership in disAbility (caps, mine,) advocacy, and her knife-sharp wit and ability to hammer a point with precision. So, I leave the rest of this post to quoting her during this busy national autism awareness month with many art events for my soon-to-be 21-year-old artist daughter with autism. My mind is overloaded with ideas to write about and little time to put them here. Thoughts are on high gear as we march to the perilous precipice of age 21, and one year closer to the black abyss of services post public school. I am writing about much of this via public posts on my personal Facebook page.
Here's holly lu, in her wonderful and unique form of punctuation, without editing from me:
"we are seeing the coming of age of adults who were very premature &/or very sick babies, who wouldn't have survived in previous generations. 1 of the most drastic circumstances we face is the upwards of 850,000 people with I/DD whose caregivers are over 60. some of the folks may have bucked the medical 'wisdom' of the time, & kept their son/daughter/sister/brother home rather than institutionalizing them--& are still on waiting lists, if they've even qualified for waiver services. there are also many grandparents who are raising their children's children due to substance abuse/extreme poverty/mental illness which may have caused DD in the kids.
"i was going to add the caveat that I don't mean to sound so grim--but in fact there's no choice. the aging of baby boomers has been described as a 'silver tsunami'--the implications for the disability community are profound.
"i'm certainly an example of what I prefer to call the "grinder generation" (b/c it's a more evocative term than "sandwich" & b/c that's the right name for subs in CT)--32 y.o. son w/disabilities, caring for my 94 y.o. mother, beginning to deal w/the wear & tear of aging upon my own little frame."
[Me] Here in Tennessee, our legislators continue their hillbilly who-ha shenanigans to pass laws allowing guns in parks, making the Bible the official book of Tennessee, all while refusing the Governor's last ditch efforts to insure hundreds of thousands of Tennesseeans without health coverage and...here it is: once again, debating whether or not to fund the sons and daughters of parents aged 80 and over to roll off the medicaid waiver list for intellectual and developmental disAbilities. As I've written here before, I'm not planning to wait 25 more years if and when justice will be served.
Also, from an article entitled "What Will Happen When the School Bus Stops Coming," I learned these alarming statistics:
Dr. Sheila Korn—a pediatrician interviewed about her son with autism noted—according to the article, that, "residential services will become more important to their adult children when parents enter their retirement years. But waiting lists are long. As of 2012, more than 110,000 people with intellectual and developmental disabilities were on waiting lists for residential services across America; all needed housing services within a year. If you include people whose housing needs are less urgent, the number on waiting lists swells to 300,000, according to the Residential Information Systems Project at University of Minnesota."
Crisis, folks, and we've not crested yet: #TheSilverTsunami #AutismPost21Crisis
On a more positive note, this year's Nashville Film Festival will feature "Learning to Dance in Ohio," about youths with autism preparing for their first formal dance. Show times are this Saturday and Thursday of next week. Click this link for more details.
And then back to the issue at hand for so many of us: I was the first caller this morning on Tom Ashbrook's On Point Radio on NPR. Here's the link to the site. To locate and listen to the podcast, look for April 16, 2015, "Stark Realities of Autistic Adulthood." (I cried on National Public Radio.) It's been a difficult week.