tears in heaven
Dec. 10th, 2009 10:57 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
mickeymThis is absolutely heartbreaking. (Linked from here, originally.)
It made me sad, and angry in turns, reading that article. I cried -- I'm still teary, actually.
One thing that stood out for me, in this article, was this:
"Because autism is a spectrum, there's going to need to be a wide range of options for adult living," says Susan Ratner, assistant director for special projects at Bellefaire JCB in Shaker Heights, which is in the early stages of developing a small adult-residential facility.
When the Bellefaire staff looked for models around the country, however, they could not find many. "What has clearly come out is that there are big gaps in adult services," Ratner says.
The search process is even more complex and sensitive when violence is involved.
In 2001, the Autism Society of America sounded the alarm on what it called a national crisis: a critical shortage of services and facilities for adults with autism. In 2007, when not much had changed, it updated its call for action. Parts of the ASA's report read like an account of Trudy and Sky's lives.
"In a behavioral, out-of-control crisis, individuals with autism can be scary," it says. "Parents are desperate. Aging caretakers (often single mothers, often living alone with their middle-aged child), knowing how difficult it is to adequately care for an adult with autism, are often prisoners in their own homes."
De Caris came to the same conclusion. "This is more common than I ever imagined," he says. "The facilities are just not out there - not at the level that's going to be needed. What's going to happen to all these children as they get older, and their parents who are their primary caregivers disappear? Even at facilities that do exist, the cost is outrageous. If you're making a typical salary, how do you afford that?"
The young man in question in that story is profoundly autistic as well as possibly mentally retarded, and non-verbal, which my son isn't. Matthew also isn't nearly as aggressive as he was when he was younger (and hopefully never will be again) -- but Matthew also has issues with impulse control, and when he does get angry or frustrated those issues (and his control) get considerably more frayed. I don't fear my son, as such, but I'm not unaware of the fact that he's now pushing six feet tall, and weighs roughly 185-190lbs. Do I think he's likely to attack me? No. Do I discount entirely that it could happen? Absolutely not.
The sheriff who basically cared for the young man while he was jailed...is awesome. I hope he's recognized for HOW awesome, because so many people wouldn't have gone out of their way to help a young man not even aware of what was going on. That, at least, gives me some hope. But the rest of it just makes me so very, very sad.
It made me sad, and angry in turns, reading that article. I cried -- I'm still teary, actually.
One thing that stood out for me, in this article, was this:
"Because autism is a spectrum, there's going to need to be a wide range of options for adult living," says Susan Ratner, assistant director for special projects at Bellefaire JCB in Shaker Heights, which is in the early stages of developing a small adult-residential facility.
When the Bellefaire staff looked for models around the country, however, they could not find many. "What has clearly come out is that there are big gaps in adult services," Ratner says.
The search process is even more complex and sensitive when violence is involved.
In 2001, the Autism Society of America sounded the alarm on what it called a national crisis: a critical shortage of services and facilities for adults with autism. In 2007, when not much had changed, it updated its call for action. Parts of the ASA's report read like an account of Trudy and Sky's lives.
"In a behavioral, out-of-control crisis, individuals with autism can be scary," it says. "Parents are desperate. Aging caretakers (often single mothers, often living alone with their middle-aged child), knowing how difficult it is to adequately care for an adult with autism, are often prisoners in their own homes."
De Caris came to the same conclusion. "This is more common than I ever imagined," he says. "The facilities are just not out there - not at the level that's going to be needed. What's going to happen to all these children as they get older, and their parents who are their primary caregivers disappear? Even at facilities that do exist, the cost is outrageous. If you're making a typical salary, how do you afford that?"
The young man in question in that story is profoundly autistic as well as possibly mentally retarded, and non-verbal, which my son isn't. Matthew also isn't nearly as aggressive as he was when he was younger (and hopefully never will be again) -- but Matthew also has issues with impulse control, and when he does get angry or frustrated those issues (and his control) get considerably more frayed. I don't fear my son, as such, but I'm not unaware of the fact that he's now pushing six feet tall, and weighs roughly 185-190lbs. Do I think he's likely to attack me? No. Do I discount entirely that it could happen? Absolutely not.
The sheriff who basically cared for the young man while he was jailed...is awesome. I hope he's recognized for HOW awesome, because so many people wouldn't have gone out of their way to help a young man not even aware of what was going on. That, at least, gives me some hope. But the rest of it just makes me so very, very sad.
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no subject
Date: 2009-12-11 04:07 am (UTC)*hugs for you and Matthew*
no subject
Date: 2009-12-11 04:19 am (UTC)Ugh.
Yeah, the article broke my heart, truly. For both Sky, and for his mom.
*hugs back*
no subject
Date: 2009-12-11 01:44 pm (UTC)I was bothered by the way the article seemed to be pushing the idea that it was her own fault for fighting the residential placement. Maybe that would have worked for her, but in most cases, once the child is placed in a residential facility, the insurance company will immediately begin the push for a child's release under the guise of that wonderful catch phrase "least restrictive environment," when really they just don't want to pay for the level of care a child needs long term.
Recently our insurance company has decided they need to move on my son's discharge since "he is only acting out because he doesn't want to leave the facility." His outbursts of aggressive rage are the same behaviors that convinced me to agree to residential placement in the first place, but now they want to let him out even though the behaviors have not changed.
no subject
Date: 2009-12-11 03:38 pm (UTC)no subject
Date: 2009-12-12 11:49 pm (UTC)