Fw: [SPECIALFAMILIESGUIDE] Don't Mourn for Us by Jim Sinclair

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[sPECIALFAMILIESGUIDE] " Don't Mourn for Us " by Jim Sinclair

Many parents of children with all sorts of disabilities certainly

experience individual and varied amounts of grief. It is always

important in parenting any child to be aware of one's feelings and

not assume what a child may or may not be feeling. Jim Sinclair in

this essay gives important insight as someone who lives with autism

and embraces life. These same sentiments have also been expressed

by many adults with a wide array of disabilites. One excellent

source for such accounts is " Reflections from a Different Journey :

What Adults with Disabilities Wish All Parents Knew " by Stanley

Klein and Kemp.

DON'T MOURN FOR US

by Jim Sinclair - http://web.syr.edu/~jisincla/dontmourn.htm

[This article was published in the " Our Voice, " the newsletter of

Autism Network International, Volume 1, Number 3, 1993. It is an

outline of the presentation I gave at the 1993 International

Conference on Autism in Toronto, and is addressed primarily to

parents.]

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 and 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 same 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

my 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 my 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.

**Reprint permission: All articles published in " Our Voice " may be

freely copied and shared for personal use, and reprinted in other

publications, provided the original author and publication credits

are included in all copies or reprints. If you reprint any of my

articles, I would appreciate being sent a copy of the publication

containing my article. My mailing address is: Jim Sinclair, P.O.

Box 35448, Syracuse, NY 13235

*********************

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Best regards-

Naseef

http://alternativechoices.com/specialfamilies.htm

Readers can read more about " Voices from the Spectrum. " this book

and see photos of the essay writers at:

http://www.amazon.com/gp/product/1843107864/qid=1143312927/sr=1-

1/ref=sr_1_1/002-4430253-3063208?s=books & v=glance & n=283155

Check out " Special Children, Challenged Parents " at:

http://www.amazon.com/gp/product/1557665354/ref=pd_ecc_rvi_2/104-

2314304-1031948?ie=UTF8

" Reflections from a Different Journey : What Adults with

Disabilities Wish All Parents Knew " by Stanley Klein and Kemp

is available at http://www.amazon.com/Reflections-Different-Journey-

Disabilities-Parents/dp/0071422692/ref=pd_sim_b_2/102-1334746-4679363