Acceptance
I had a friend on Twitter retweet something to me, a question she was asked. (and for the record, I hate the word "tweet" to describe communication, but when in Rome....)
"Who are ASD Acceptance and why are they boycotting Autism Speaks ?? Did I miss something?"
I've written about why I don't support a boycott of Autism Speaks (right here), so I don't need to rehash that. But ASD Acceptance? Sounded like an organization or a Facebook page or something I should check out.
ASD Acceptance is indeed a Facebook page. (ASD standing for "Autism Spectrum Disorder"). They believe that what the world needs now is acceptance, sweet acceptance; they want Autism Awareness Month to be about the fact that Autism shouldn't be promoted as a disorder to be "cured" but rather a diversity to be celebrated. To that end, if you want to see autism end... yeah, they don't like you.
They reposted a picture from another Facebook page which was a collection of quotes from other Facebook pages and blogs, one of which read this way:
I just feel like I am supposed to accept this horrible thing with a smile on my face and pretend that it doesn’t suck and I am tired of it. I am supposed to pretend that all of the uncertainty, all the frustrations, all the tantrums and all the pain is just something that I accept and happily deal with. I read a comment the other day from a mom that said she “wouldn’t have her son any other way.” I don’t mean to discredit this mother at all, but that’s just something you tell yourself to make it not hurt so much. I love Mara exactly as she is, but if I could do something to take away her autism, I would do it in a heartbeat.
The comments were plentiful:
Karla's ASD Page BTW: It took me about 10 min to find and make this poster. Not hard in Autism Awareness month.... Anyone still have questions about the hate?
Jill Canner McCormick I cannot believe the pure Ignorance! I have 3 kids and 2 have autism and we embrace them for who they r! So many people want to fix those that have autism!! Why?? UGH!! They SUCK!!! :((
Angie Melissa Whoever the parent is who wrote that I wonder if they'd cope with any child without whinging.
Jonathan Clement I don't think autism is the problem. I think the problem is fault-finders.
Kirsten Oswin Oswald Thow Whoever made this blog sucks!!!! 'Austism is unacceptable..' Uneducated douche.
Hollin Sutherland Goodwin They are awful parents. I know it's frustrating at times and autism is hard on those of us who have children who are more severe, as my son is, but I don't hate autism. I couldn't hate any part of any of my children. I worry for his future-will he ever be independent or will he ever TALK--I want him to have a happy life. Not one filled with people hating him because of his autism. It's so so sad. (emphasis mine)
They are awful parents. Okay, Hollin Sutherland Goodwin, them's fighting words. When someone insinuates that I am an awful parent, I am going to have something to say about it. And another something. And another.
Neither of my children talk. Of course, talking is not necessary for communication, any one of a number of methods will suffice- pictures, Ipads, assistive communication devices. My son is good at being able to show me what he needs; of course, I have had years of practice in learning to anticipate his daily routine. My daughter, on the other hand, does not communicate well at all. Her method of communication is to pull your hand, or push you from behind, and if you don't get the hint right away she whimpers. Then cries. Possibly even screams. And when that happens, all hell is about to break loose.
BANG! BANG! BANG!
That sound means only one thing- a new hole in the wall. I rush back to the bedroom where my son is holed up (pardon the pun) and try to calm him down. It isn't working. BANG! BANG! BANG! If I am lucky, I can keep him away from the furniture. But not this day. BANG! And blood pulses from an inch-long gash in his forehead.
He finally calms down when I explain to him that I have to clean his head. I press a towel to his head once, twice, three times. I get the blood to stop flowing, but it is obvious that he and I are off to the emergency room. I pack the diaper bag, I pack the Ipad and Nook, and off we go. ER trip number five this year.
When we get home he wants me to go back to the bedroom with him, but he doesn't want me to leave. He wants me to kiss him. Again. And again. Whenever I ask him what he wants, he leans in for another kiss. I stand there and kiss him as long as he needs. Finally the Ipad beckons, and he gestures for me to leave.
I check on him later to clean his wound, change his bandaid, and... oops- what did I just step in? A rhetorical question, for I know what I just stepped in. He took his diaper off, and the poop that he didn't try to cover with a t-shirt or a bedsheet is now on the sole of my foot. I hop to the bathroom, clean off my foot, and then grab the scrub brush and laundry soap and head back for my umpteenth cleanup job.
My daughter emerges from her room. What's this? She's nude? I shield my eyes and call for my wife. The brush and soap do not leave my grasp. I know what is coming up.
And Hollin Sutherland Goodwin thinks I am an awful parent because I think that autism sucks. Hollin, are you listening? Autism sucks. AUTISM SUCKS. It has robbed me of my livelihood, it has robbed us of our family life, it has robbed my children of their future.
Hollin Sutherland Goodwin, how in the world can you participate in a site that promotes acceptance and listening to each others stories, and be so quick to dismiss mine? How can you decry judgmentalism and then tap that same well of judgmentalism to dismiss the concerns of my life and my family? How can you talk about diversity yet leave no room in the discussion for any stories other than your own and those who agree with you?
Hollin Sutherland Goodwin, I am not an awful parent. I don't do many things well, but I believe I am a damned good parent. When parent-teacher conferences come up, I am there. When my children are sick, I am there. When my son took an accidental overdose of medication, I stayed up all night long with him, slept for an hour, and then went back and stayed with him some more.
When the road gets hard, and it gets hard a lot, I don't bail. I am committed to my children. I AM THERE.
I hate the infighting that seems to be frequent among those parents of autistic children, and those with autism themselves. I generally don't like getting involved. But when you question my parenting desires and skills? I come out shooting for bear.
I don't accept my children because I hate the condition that has robbed them of so much? On the contrary. I love and accept my children more than anyone could possibly know.
"Who are ASD Acceptance and why are they boycotting Autism Speaks ?? Did I miss something?"
I've written about why I don't support a boycott of Autism Speaks (right here), so I don't need to rehash that. But ASD Acceptance? Sounded like an organization or a Facebook page or something I should check out.
ASD Acceptance is indeed a Facebook page. (ASD standing for "Autism Spectrum Disorder"). They believe that what the world needs now is acceptance, sweet acceptance; they want Autism Awareness Month to be about the fact that Autism shouldn't be promoted as a disorder to be "cured" but rather a diversity to be celebrated. To that end, if you want to see autism end... yeah, they don't like you.
They reposted a picture from another Facebook page which was a collection of quotes from other Facebook pages and blogs, one of which read this way:
I just feel like I am supposed to accept this horrible thing with a smile on my face and pretend that it doesn’t suck and I am tired of it. I am supposed to pretend that all of the uncertainty, all the frustrations, all the tantrums and all the pain is just something that I accept and happily deal with. I read a comment the other day from a mom that said she “wouldn’t have her son any other way.” I don’t mean to discredit this mother at all, but that’s just something you tell yourself to make it not hurt so much. I love Mara exactly as she is, but if I could do something to take away her autism, I would do it in a heartbeat.
The comments were plentiful:
Karla's ASD Page BTW: It took me about 10 min to find and make this poster. Not hard in Autism Awareness month.... Anyone still have questions about the hate?
Jill Canner McCormick I cannot believe the pure Ignorance! I have 3 kids and 2 have autism and we embrace them for who they r! So many people want to fix those that have autism!! Why?? UGH!! They SUCK!!! :((
Angie Melissa Whoever the parent is who wrote that I wonder if they'd cope with any child without whinging.
Jonathan Clement I don't think autism is the problem. I think the problem is fault-finders.
Kirsten Oswin Oswald Thow Whoever made this blog sucks!!!! 'Austism is unacceptable..' Uneducated douche.
Hollin Sutherland Goodwin They are awful parents. I know it's frustrating at times and autism is hard on those of us who have children who are more severe, as my son is, but I don't hate autism. I couldn't hate any part of any of my children. I worry for his future-will he ever be independent or will he ever TALK--I want him to have a happy life. Not one filled with people hating him because of his autism. It's so so sad. (emphasis mine)
They are awful parents. Okay, Hollin Sutherland Goodwin, them's fighting words. When someone insinuates that I am an awful parent, I am going to have something to say about it. And another something. And another.
Neither of my children talk. Of course, talking is not necessary for communication, any one of a number of methods will suffice- pictures, Ipads, assistive communication devices. My son is good at being able to show me what he needs; of course, I have had years of practice in learning to anticipate his daily routine. My daughter, on the other hand, does not communicate well at all. Her method of communication is to pull your hand, or push you from behind, and if you don't get the hint right away she whimpers. Then cries. Possibly even screams. And when that happens, all hell is about to break loose.
BANG! BANG! BANG!
That sound means only one thing- a new hole in the wall. I rush back to the bedroom where my son is holed up (pardon the pun) and try to calm him down. It isn't working. BANG! BANG! BANG! If I am lucky, I can keep him away from the furniture. But not this day. BANG! And blood pulses from an inch-long gash in his forehead.
He finally calms down when I explain to him that I have to clean his head. I press a towel to his head once, twice, three times. I get the blood to stop flowing, but it is obvious that he and I are off to the emergency room. I pack the diaper bag, I pack the Ipad and Nook, and off we go. ER trip number five this year.
When we get home he wants me to go back to the bedroom with him, but he doesn't want me to leave. He wants me to kiss him. Again. And again. Whenever I ask him what he wants, he leans in for another kiss. I stand there and kiss him as long as he needs. Finally the Ipad beckons, and he gestures for me to leave.
I check on him later to clean his wound, change his bandaid, and... oops- what did I just step in? A rhetorical question, for I know what I just stepped in. He took his diaper off, and the poop that he didn't try to cover with a t-shirt or a bedsheet is now on the sole of my foot. I hop to the bathroom, clean off my foot, and then grab the scrub brush and laundry soap and head back for my umpteenth cleanup job.
My daughter emerges from her room. What's this? She's nude? I shield my eyes and call for my wife. The brush and soap do not leave my grasp. I know what is coming up.
And Hollin Sutherland Goodwin thinks I am an awful parent because I think that autism sucks. Hollin, are you listening? Autism sucks. AUTISM SUCKS. It has robbed me of my livelihood, it has robbed us of our family life, it has robbed my children of their future.
Hollin Sutherland Goodwin, how in the world can you participate in a site that promotes acceptance and listening to each others stories, and be so quick to dismiss mine? How can you decry judgmentalism and then tap that same well of judgmentalism to dismiss the concerns of my life and my family? How can you talk about diversity yet leave no room in the discussion for any stories other than your own and those who agree with you?
Hollin Sutherland Goodwin, I am not an awful parent. I don't do many things well, but I believe I am a damned good parent. When parent-teacher conferences come up, I am there. When my children are sick, I am there. When my son took an accidental overdose of medication, I stayed up all night long with him, slept for an hour, and then went back and stayed with him some more.
When the road gets hard, and it gets hard a lot, I don't bail. I am committed to my children. I AM THERE.
I hate the infighting that seems to be frequent among those parents of autistic children, and those with autism themselves. I generally don't like getting involved. But when you question my parenting desires and skills? I come out shooting for bear.
I don't accept my children because I hate the condition that has robbed them of so much? On the contrary. I love and accept my children more than anyone could possibly know.
posted by The Man at 3:29 PM
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