Saturday, September 20, 2003
"Don't Mourn For Us"
By: Jim Sinclair
This article was published in "Our Voice". The newsletter of Autism
Network International
Volume 1, Number 3, 1993.
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes nd expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage. Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it:
Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, "I wish my child did not have autism," what they're really saying is, "I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead." Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in
behind our faces. Autism is not an impenetrable wall.
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true. Look at it again:
You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system. That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant. It takes more work to communicate with someone whose native language isn't the same as yours.
And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world. And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different.
Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined. Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in
your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien
beings. We spend our entire lives doing this. And then you tell us that we can't relate.
Autism is not death. Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they
expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. But not when the child is autistic.
Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and
it needs to be expected and worked through so people can get on with their lives--but it has nothing to do with autism. What it comes down to is
that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a
while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward
to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the
child you waited and hoped and planned and dreamed for didn't arrive. This is the same thing that parents experience when a child is stillborn,
or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations.
I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the time the child being mourned for died.
You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic
child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose
vision of us is obscured by the ghosts of children who never lived.
Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you. This is what I
think Autism Societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your
understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than
being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place
for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not the child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not the child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you!
Roxanne Przybysz
Founding Director
Autism Canada Foundation
http://www.autismcanada.org/home.htmhttp://www.autismcanada.org/RansomVIDEOpsa.mov
posted by Kimber
at 9:39 AM ::
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Wednesday, September 17, 2003
Well, I'm not dead yet, so I guess I'll post something.
During my antihistimine, insomnial induced delerium of the past couple of days it occurred to me that perhaps the reason the average american doesn't get why the war in Iraq was wrong is that he just can't relate to the situation. It's just too large for him to grasp. So I have boiled it down to a level that your average Bush League dittohead will readily be able to identify with. This is working with the current party line that we went in and invaded because Saddam Husein was an evil dictator and we were liberating Iraq and not anything to do with WMDs.
Ok. There are 3 guys. For our purposes we will call them Bubba, Jo Bob and Cletus.
Jo Bob walks up to Bubba one day and says: "Hey Bubba. I'm headin' over to Cletus's house this afternoon. I'm takin' my .45 and my shotgun and I'm gonna blow his face off 'cause he's beatin' on his wife and kids and that just ain't right. Git a couple a yer huntin rifles and come on with me."
Bubba says: "Now hol' on there, Jo Bob. Yer talkin' bout some serious goins on there. Fer one thing, you caint jes go inta some fellers house and shoot im in the face. An what if ya git in there shootin an miss Cletus an hit the Missus or one of the yunguns? Hadn't we otta call the Sherif an let him take care a this?"
Jo Bob looks at Bubba indignantly and says: "Hell no, son! I know what's right and I know how ta hannle it. What that ol boy needs is a shotgun shell between the horns and we's the folks ta do it! Now come on Bubba! Git yer guns and less go!"
Bubba looks back at Jo Bob and says: "Why don we jes call the Sherif, let im go in an size up the sicheeation. Maybe the Missus don want nobody comin in an shootin up her house. Maybe she'd be jes as happy if sombody come an hauled Cletus off so she an the yunguns could stay there peacable like."
Jo Bob is getting pissed now: "Bubba if you don beat all!! Hellfire and damnation boy! Is you a man or a mouse? A course she want's somebody ta come in an haul Cletus off an that's what I'm fixin to do! Guns blazin' like a man! There's only one way to take care a critters like Cletus, they only unnerstan one language. He beats on her an them kids somethin awful! How can you jes stan there an waste all this time? Why he could be in there right now a wackin on them kids. You wont that on yer conscience?"
Bubba crosses his arms: "I jes caint do it, Jo Bob. I jes caint go inta a man's own home, with his wife an kids an shoot up the place and kill him dead. At leas not until the Sherif had a chance to do it all legal like. Maybe if that didn work I'd take a rifle an go in with ya to haul Cletus out."
Jo Bob spits on Bubba's boots: "Well then screw you Bubba an the horse ya rode in on. Yer bout as useful as a bull wit tits. I'm goin over there an I'm gonna do what needs to be done. You can kiss my ass!"
So Jo Bob storms into the house, guns blazin. Cletus is out in the garage workin on his El Camino and hears the racket. He drops his rachet and runs out the back door into the woods behind the house. Mrs. Cletus and the kids were in the middle of lunch when they hear the gunshots. She grabs the children and hides under the table. Jo Bob fires down the hallway and a shot ricochets off the oven and hits the 5 year old. She's dead. The Mrs. Cletus is now screaming and the 1 year old is screaming and Jo Bob is heading upstairs firing away. He had to take a break on the landing to reload. After he has gone through the whole house he heads down the stairs, covered in plaster from what is left of the walls. Mrs. Cletus is sitting on the floor holding her dead daughter and her terrified son in her arms. She looks up at Jo Bob as he enters the kitchen. He looks down at her and says: "Hello Missus. No need ta thank me. I's jes doin what any red blooded merican man would do. You don have ta worry bout Cletus no more. I didn git him this time, he high tailed it out inta the woods, but I'll git im next time. In the mean time, though, I'll jes fix up his taxidermy shop in the attic and take that over for ya. That way you'll still have income for the yunguns there." And out he walks.
Mrs. Cletus picks up her dead child and her infant and follows him out. She screams at him: "What about my dead baby? What about our house? You shot it all up! We can't live here! There's no water! There's no food! There's just a big ol pile of metal and scrap where the fridge and pantry used to be!"
Jo Bob turns around and looks back at her, very confused: "Well, now Missus, I ain't got nuthin to do with all that. I came in an got rid a Cletus for ya. I's gonna get that taxidermy shop up an runnin again for ya. Ya caint spect more n that, now."
But Mrs. Cletus is having none of that: "You ran off my husband. You killed my daughter. You destroyed my house. That taxidermy shop ain't gonna cover none of that. You owe me an I'm gonna get mine back!"
So now Jo Bob heads back to Bubba: "I jes don unnerstan it, Bubba. Here I dun all these good deeds for this woman but still she's a hollerin I OWE her somethin. Runnin on about her house bein shot up and her kid bein dead. She don git that what I dun was a GOOD thing for her!"
Bubba looks at Jo Bob and says: "So now whachya gonna do, Jo Bob? Folks ain't gonna ignore this one. I believe yer gonna have to pony up, son"
Jo Bob looks back at Bubba: "Well, here's an idea. Now I'm gonna run that taxidermy shop for her an I can look after the money from that so's it can help pay for her an the younguns."
Bubba jumps in: "Yungun ya mean"
Jo Bob waves his hand dismissingly: "Yeah whatever. So what you can do is give me the money to fix everthin' back up agin and send some of yer fellers over to get the work done. Then everthin'll be back to rights agin."
Bubba asks: "So if I gives you this here money, yer gonna let me have a say in how it's spent and if I send my fellers over, I git ta have a say in how things is done, right."
Jo Bob laughs: "Oh hell no! I don't need no help with that, I jes need money and fellers."
Bubba looks back at Jo Bob like he grew another head right in front of his eyes: "HOSS! You jes ain't right in the head! Firs you don listen to me when I tell ya not to do such a damn fool thing in the firs place, then ya tell me to screw off an kiss yer ass, then you come back here an tell me I need to give you money an fellers without even so much as a yes or no in return?"
Jo Bob smiles: "YEAH! Now ya git it!"
Bubba just shakes his head and walks off laughing to the Wagon Wheel for a beer and some cheese fries.
posted by Kimber
at 10:42 AM ::
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Monday, September 15, 2003
The worst thing about the common cold is that it's not fatal. In view of the fact that I am under siege by a vicious, merciless germ, you will not be getting my usual witty repartee today. Just an "I told you so" link from Yahoo. Enjoy. Chat amongst yourselves.
Yahoo! News - New Terror Laws Used Vs. Common Criminals
posted by Kimber
at 2:37 AM ::
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