My older brother Bill is autistic and tomorrow morning my sister and this bitch (co-guardians) will attend his annual plan meeting.
Imagine Snakes on a Plane in a conference room with bad coffee and no pastries.
Anyhoo, some of y’all are kind enough to send me articles and news items about autism like a certain reader who was kind enough to forward an article on Jenny McCarthy’s new book about a cure she found for her son's autism.
Blink.
Now, a bitch couldn’t pick Jenny McCarthy out of a line up if I had to. I’ve got no ill will towards her or that book. And as much as I agree that autism is a spectrum disorder I also agree that some of that shit can be treated. So, I hope she did find some sort of cure or treatment for her son.
Having said that, this bitch has been down the “this will work…oh no, my bad - it won’t” road and it can be an emotional monster.
Catch that knee…I said catch it!
Shit.
My brother is 37 years old. That’s right…God willing, autistic kids grow up into autistic adults. That’s nothing to sob about…each year is a blessing not a failure of research. As the youngest child of three I grew up witnessing my mother trying to cure Bill while never coming to terms with her son and who he is…that’s the emotional monster I’m talking about.
There was the oh yea of little faith stage.
Some minister told my mother that Bill was born autistic to punish her for her sins, but if she prayed hard enough God would forgive her and cure him.
My mother tumbled into a massive depression that she fought against by searching for that magical treatment…that blessed cure…the fix that would take the autism out of Bill and the blame off of her shoulders.
She prayed…our family prayed…multiple churches prayed.
Bill remained autistic.
It took me damned near 30 years to realize God answered us all…loud and clear.
Ummm, then there was the get rid of caffeine, artificial coloring and sugar diet.
That shit was a royal beating!
Mmmhmmm, the nutritional method hit our house when this bitch was around 7 or 8 years old and I hated that motherfucking smug ass dietician with a fierce passion. It was bad enough that I had to spend summers hanging out at a school for autistic kids with my mother (Lawd, have mercy) but to be denied sugar after having sampled the magical elixir of the gods (artificially flavored sparkling grape soda, of course…wink) was criminal!
Oh but we did that shit…and the no dairy shit…and the dark leafy green vegetables followed by prune juice diet…and the no caffeine diet too…even the no wheat oh wait let’s try only wheat diet was road tested.
Bill remained autistic.
And who could forget the Psychomotor Patterning experiment.
Talk about some creepy assed shit!
My mother decided that all her chil’ren would benefit so we had to participate…and my hatred was split equally between that smug dietician and the 'you need to sleep in one position all night wrapped tightly in a blanket so that you can fully experience your infant state again' therapist.
I would wake up at 3 o’clock in the morning to find my mother looming over me trying to reposition me in my bed because…gasp!...I had shifted out of the fetal sleeping pattern and my life was going to be ruined for ever. And this bitch couldn’t even indulge in a cup of coffee the next day.
Bill, who didn’t require sleep (part vampire, to be sure), remained autistic.
I could go on and on but I won’t. Don’t get me wrong…I support families exploring options and trying new treatments.
Hell, a bitch saw Lorenzo’s Oil too.
But I also think it’s important that autism not be the thing that must be fixed or cured for any parent or family to be at peace.
I can’t imagine the misplaced guilt that a parent may feel when their child is ill…nor can I imagine the anxiety and frustration that comes with being told your child has a diagnosis that contains more unknowns than understoods.
But I can honestly tell you that loving and accepting Bill has been a hell of a lot easier than sleeping in the same position wrapped tightly in a blanket for 8 fucking hours (wink).
Bill is a great guy…not a cure that didn’t happen.
That's what helps me survive Snakes in a Person Centered Plan Meeting every year!
14 comments:
ABB,
You had me laughing AND crying with this one. Our son is autistic and it's amazing the snake oil you have to dodge before finding something that works for your situation. Hell, it's hell trying to find a doctor who can tell you some more than "Yeah, Vern. Looks like autism." (And pay $250 bucks an hour for that.)
It can be a trip too. And I wouldn't have him any other way.
May you persist in your loving attitude for your brother. You are spectacular. What we don't know about differences among people and how and why we get the way we get is amazing. Keep on helping us see it all.
BYW, speaking of differences, how about Carver saying in a Senate hearing that the govmint shouldn't be approving nasty homo stuff by letting them in the armed forces?
Golly Day!
A beautiful and truthful post as always, ABB. Love to Bill, and I hope the meeting goes well. You and C-Money are wonderful sisters.
Jenny McCarthy was on the View this week, and since I've been involved with children almost my entire working life, and have worked with the families of a few autistic children (the first in 1969), I've been aware of the condition and of the hell families go through trying to cure it. So, I recorded the program and watched it.
I hope for her sake that her child has, as she said, recovered. But I don't really think he has. When she said that she can't understand why the medical community won't pay attention to the solutions that are out there and working, I knew. Because, the medical community has looked into these "solutions" long ago, and they aren't going to continue to examine things that have already been proven to be ineffective.
It's sad. And it's sad to see people fall for the same old snake oil that your mother tried and some of the mothers I knew tried and that don't work. If they worked, there would be no autistic people out there.
a lot of disabled people don't believe in cures, myself included. and it's for much of the reasons you stated, not embracing who we are. the medical model says disability is a "condition" but many disabled folk believe it to be a cultural identity...it's only disabling when you're in an intolerant, inaccessible society; placing the blame on us sounds all too familiar to other groups of people. just as i wouldn't want to be cured for being queer or a woman, i wouldn't want to rid my dis either.
i liked reading your post, thanks.
Another , vivid and touching post, you spoil us , Shark -Fu . Anyhow after all and said and done. Bill and the thousands of others young and old afflicted with Autism or other mental or physical disabilities need full parody of care and coverage in our Health Care System. Many who require a life time of care. They and their families NEED it to be there. Good Care Homes, when the family can no longer manage. And insurance companies..(blech) better a single payer that does not rule someone out from care due to what they arbitrarily deem a pre existing or non treatable condition.
This kind of coverage , the full meal deal, a pizza (for Bill) with the "works" Too many families are left on their own - if a child recieves a DD or Autism diagnosis and that just should not be the case.
Thank you for that very enlightening post.
My admiration of you only grows.
While I do not know you, I actually stubbled upon you post when researching; however, I found your post enlightening and a post that could bring a smile and a tear. So many people are under the feeling that their child can be cured or that it is the fault of the parents that their child has autism (or any other disability). I have a disabled brother as well and your post want inspiring. Major kudos!
Your understanding that a condition doesn't define a position is truly touching. My heart truly goes out to your mother also in that I don't have kids (apart from being a teacher) and so I can't imagine how it must reend at your soul and also in that paharmaceutical and other Big Sick industries will try and sell people on any variable of hope. I'm sure she desperately (perhaps too desperately) wanted your brother to be well. Still, you and your sister sound like the best sisters a brother could want. And make sure you have some coffee before the meeting. :)
You rock, Shark-fu! This wasn't a subject I expected to see on your blog, and you've slapped down that bullshit with your usual verve.
The whole "doomed to be trapped in the dark abyss of autism" nonsense and chasing after nonsense "cures" peddled by snake-oil salesmen has got to stop. All those stories about "recovered" children are so tiresome; you'll note that they never have masses of cured and
recovered people to prove anything, just masses of useless anecdotes.
Sometimes parents get “stuck” in the blame and bargaining stages of grieving. They have not accepted the disability, and their child is not okay as a disabled person. In the denial is the core myth that somehow out there is a cure, and once they can fix the problem, then everything in their lives will be okay. The parents dwell upon the past and perceived injustices, and nothing less than total “cure” is acceptable. Sadly, this means that until the parent can announce the child is cured, then the child is not fully acceptable and loved as a full human being. This is devastating to the social, spiritual, and even physical development of the child.
I hope things go well with the annual meeting; Bill is lucky to have ABB for his sister!
This post is uplifting for me. I have never known someone that had to deal with autism in their family.
Damn I heart you ABB. That you can speak from the heart about a subject so close to you, in a public forum amazes me.
You are one helluva wonderful human being..and I salute you.
ps..I am going to repost this a Sirens today..its so moving and I have to attend a funeral with my son today who lost his best friend Sunday.
The man hung himself and did not leave a note.My son is so lost without his closest friend and I feel helpless to comfort him.
Your words gave ME comfort today. Thank you ABB.
My 11 year old nephew is autistic and I've seen how hard it's been on my sister and her partner. Thankfully, so far they've found what seems to be a good school for him. (They're in Palm Bay, FL)
Your post touched me.
My cousin has a son who is autistic, and she has devoted the last 19 years to making sure he has the chance to reach his full potential.
He started college this year. No, he's not cured and he never will be, but it's a heck of a lot more than many people expected of him. And he's a great kid.
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