I have to admit that my focus on advocacy is fairly limited. Perhaps that’s needs to change. However, I’m heavily involved with my 3 autistic boys. That’s what I know. I tend to focus on what I know, first hand.
Right now, I’m a parent to 3 young autistic boys and that’s what my life revolves around. I’m also a special needs parent and so I know first hand what challenges are faced by a special needs parent.
That’s way you don’t hear me speak to much about much outside of that arena, at least for now.
My kids are what I know and my personal experience is what I share.
Having said that, as they grow, I grow with them and my advocacy will evolve as well.
However, and this is a very humongous however, this narrowed focus may be a disservice to my children and here’s why.
What I do now, in this moment and the ones that follow, will set the stage for what my kids will be faced with it in the future. As they grow into adulthood, I need to make sure that my kids are prepared for the world. I also need to make sure the world is prepared for them.
It seems like the overwhelming focus, including my own, has been on autism during childhood. I need to start looking at autism as a whole and remembering autism doesn’t disappear when my kids turn 18.
I mean where do think autistic adults come from?
I’ll give you a clue. You are probably tucking them into bed, every night and telling them how much you love them.
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The problem is that too many normal parents of Autistic kids ignore those of us who are already here, who have been here all our lives. SOme of us are parents too. And many of the socalled advocacy organizations (A$, ARC, etc) disrespect or ignore us as well. This has to change.
@jane3 very well said. I’ve learned so much from the Autistic grownups that I have the honor of calling friends. Well said.
ohh by the way the Hospital is question was saved from being closed. After I made a bit of a public
Nuisance of myself. one more speech to one more board
The Cost of Care
A few years back when the Soviet Empire broke apart signaling the official end of an unofficial war, the US Military looked into the idea of closing a number of its smaller military bases in order to save money. What they found was that in most cases closing the base would in the long run cost more than keeping the bases open. We have only to look at the money pit the Presidio has become to remind us of that.
(And the board sat up straighter in their seats. The Presidio was a poke in a tender place. The former Army base sitting on some of the most valued real estate in the world and no one could figure out what to do with it. So it sits mostly empty paying no taxes and sucking up money for maintenance while the lawyers argue over competing claims and costs)
Closing the MHRF will likewise cost San Francisco more than it will save.
There are over one hundred forty patients at the MHRF where shall they go in the event of closure?
Psychiatry patients do not ‘get better’ just because there is no funding for their care.
Some will no doupt end up in acute care facilities. Such facilities are all ready over burdened and under funded. Acute care is also more expensive per patient than comparable care done at the MHRF.
Some will go to board and care, even though some are unable to care for themselves in even the most basic aspects of independent living.
Some will no doubt end up wandering the streets, homeless and confused.
Some will routinely be seen in overwhelmed emergency rooms.
Some will fail to take their meds that hold their demons in check and end up acting out violently to a world gone mad. For those, a jail cell may well be their future fate.
The MHRF is currently the most cost effective answer to a difficult problem. How do we as a society care for those who can not care for themselves.
and me making a total public nuisance of myself. well some times just some times out of the most unlikely of places you get to pull out a win. Course getting there pretty much sucked ass, but hey, changing anything is never easy.
Be stubborn, keep a sense of humor, and remember, in the darkest nights, when all hope is gone, that in the end you never know how the flap of a butterflies wing will ripple through the world.
YES! I have an “adult” with autism, now, since my oldest turned 18 last spring. What it has meant for our family is that at last she qualifies for SSDI, which she got on her first application. This will mean a bit of relief from the reality of her medical bills. But it also means me recognizing that this one will not leave the nest anytime soon. She has her hobbies which keep her busy, but what she dreams of is a group…like the group in the movie “Mozart and the Whale” where she could go and hang out with others of her ilk. Meanwhile, now that she’s on Medicaid, I also hope she can get some OT, some speech therapy, and perhaps some vocational training…or college on line after her GED. Who knows. We are muddling along. She’s amazing at turning unspun wool into laceweight yarn with her hand spindle.
@AlanaJulianaSheldahl I’m going to do my part to help educate the masses. 🙂
This is a copy of a speech I once gave to the San Francisco mayor and the other political talking heads regarding the scheduled closure of a public supported residential hospital for the mentally ill. It is no less true today then it was then.
Even a Lunatic deserves respect
When most people think about severe mental illness they tend to think of it in the context of movies they have seen: ‘one flew over the coo coos nest’, ‘Girl Interrupted, ‘K-pax, ‘ Rain man, People walk away from those movies with the feeling the the severely mentally ill are , quirky but kinda cute and sweet with a childlike innocence.
Reality is a far cry from such sentimental portraiture.
The severely mentally ill are
Extremely Annoying People.
(This is the point when every single person on the board including the perfectly groomed Mr. Newsom sit up in their seats expressions of polite boredom replaced with shock. Like I had just reached up and slapped them all in the face. Nothing is more shocking to a politician than someone speaking the truth.)
Many fo the residents of the MHFR are not able to master the minimum skill sets necessary to function independently in society. Skills such as bathing, laundry, dressing themselves, some are completely illiterate, can not add 2 and 2 without extreme mental gymnastics. Some even have difficulty speaking their own name.
On top of all those difficulties, the mentally ill have an inability to understand or to conform to societies norms of behavior. The laugh for no reason, scream with no warning, they stumble, they drool.
In short, it’s hard to want to help these people. We want to draw away, to avoid to step around them.
Think for a moment how many you stepped around as you came to work this morning. How many grubby outstretched hands you pretended not to see.
We feel angry with those laying on the street in their filthy rags. Angry at them for so nakedly displaying their helpless misery.
Issues are nearly always complex, but choices nearly always simple.
What is to be done with the mentally ill? Will we as a society do the hard thing and extend to them care and safety? Or will we ignore their outstretched hands, close our eyes to their pain and need? Shall we step over the ragged man with a wrinkle of disgust and a sanctimoniously intoned
“Why doesn’t somebody do something?”
@wyrdpookaone wow… 🙂