Friday, March 16, 2007

Mourning: To Jim Sinclair

This is responding to a well-known essay by Jim Sinclair, "Don't Mourn for Us." The essay is directed at parents of autistic children, and does much of teh smae kind of generalizing that his organization seems to be fighting. The essay can be found presently at http://web.syr.edu/~jisincla/dontmourn.htm.

When I discovered Joey was autistic, I did indeed mourn. I still get upset. I greived. I worried. You could even say, I freaked out. But I think you missed completely why I was greiving- and why I still find myself listening to "Never Surrender" and having to pull off the road. You seem to miss the battle parents are fighting for their their children.

Sure, you mourn for the "normal child" you were "supposed to have." We wanted to go to Italy and ended up in Holland. But you seem to think that is 1. a bad thing, and 2. the only thing. Autism is not happening to me. I am not autistic. But what I realized, feared, knew, and greived about, was that normal life was being threatened- for me, for my child, for my family. "Normal" families have no clue abotu IEPs, special ed administrators, and the constraints of labels and resources on the simple opportunity for your child to be independent. Normal parents assume independence is in the future of their child. I can never make that assumption again. I have to fight administrators, teachers, therapists, supervisors, doctors, insurance agents, and institution, just to allow my child the same shot at respect, independence, and freedom that normal families don't even think about. As long as their kid doesn't do something stupidly criminal, they will be free to live their lives as they choose. I am going to have to fight for that right for Joey- and if I don't do that fight RIGHT NOW, he will not have that opportunity- ever. If I ever STOP fighting- if we ever surrender to this insane, ignorant system that is supposed to be helping, but is instead trying in all ways to hinder us- our default is that he will NOT be free. He will be stuck in some institution, with people who don't care dictating his every move, every minute, every breath. This is not a reason to be upset?

I'm not worried about the child I was SUPPOSED TO have. I'm scared and fighting hard enough for the child I DO have- the wonderful, beautiful, intelligent, sweetling little guy who is my Joey, and his darling, intelligent, handsome, lickable brother, Andy, even though Andy does not have autism. These are my boys. My job is to help and support them, so they can be healthy, happy, educated adults. I'm the mom here.

The whole "autistic person/person with autism" thing is just plain idiotic, and I wish people would stop playing semantics. The hole high/low functioning thing is equally stupid. People with autism are autistic. "HIgh functioning" and "low functioning" is a guide to hich services these people may need, not whether or not they need them. My kid needs service as much as any head-banging, non-verbal, wheelchair-bound person; he just needs DIFFERENT services, because he has different issues and disabilities. He may OR MAY NOT require MORE or less service. Just because my kid doesn't need a helmet doesn;t mean he doesn't need accommodations in order to function and care for himself. This should be a battle to get everyone what they need, not fighting each other for slices of an ever-shrinking pie.

When I look at Joey, I have no need to say this is not some other child. I noticed that, oh, five years ago. Does that mean I can't be worried about him, I'm not supposed to try to help him function and be independent in the world? Because that is the signal you are sending- especially to my school admin. They take up essays like this and say, "see? these people don't want services. They WANT to be autistic, just as they are. They don't want to be independent, employed, or functional- they think it torture!"

Joey is NOT an alien child who landed in my life by accident. He is a human being, and he is my son, just as much as Andy is a human being, and my son. This is NOT an alien world. We are human beings on planet earth. We just need to know how to help him understand this world, just as we help Andy understand this world. And it takes Joey a little more time to process information. He IS my own kind- he is a human being, just like I am. He just needs different help, different support, different teaching methods than what I needed, or what Andy may need. He is not an "it." Joey is MY SON.

3 comments:

abfh said...

Hi -- I followed the link from your comments on my blog (and wrote a response to your comment on my post "Assimilation").

I critiqued Sinclair's essay in a post I wrote last summer, from a somewhat different perspective.

I agree that the essay does not accurately reflect the views of many parents today; however, the essay is quite old, and at the time it was written, there were some parents and experts who believed that nonverbal autistic children were "empty shells" who had no understanding of their existence (that view still hasn't disappeared entirely). I believe Sinclair was simply making the point that grieving about a child's future can be very distressing to the child, even if the child cannot verbally communicate.

Yes, parents of autistic children often have to fight for more respect and better services, but they also need to be careful not to become too emotional about it in front of their child, in much the same way that they would shield a young child from other disturbing adult realities such as war, unemployment, etc.

When I was a young child, my parents had to move me to different schools several times because of autism-related issues, and in retrospect I'm sure they must have felt upset and threatened and frustrated, but they never talked about it in front of me and never seemed visibly upset. I just thought we were trying different schools to find out which of them was best for me. Because I had no clue that this was an unusual thing to do, I didn't worry about it.

In my experience, many parents understand quite well how sensitive autistic children can be to their parents' emotional state.

Jim said...

Hi,

I think I did address your concerns in the essay: "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."

Autistic children NEED parents who get upset about mistreatment, neglect, and lack of opportunity. They NEED parents who will stand up and fight for their rights. And it's perfectly understandable for parents to be unhappy about being in a situation where they're required to fight so hard.

It's just that that isn't what this particular essay was about. This essay was and is directed at parents who don't see any realistic goals to fight for, who believe that autism itself is the sole and insurmountable barrier keeping their children from living fulfilling and meaningful lives, and and are so busy grieving about the fact of their children being autistic that they can't see either their children's potential or the kinds of support that would actually help their kids.

Joeymom said...

That is an excellent point. When I wrote this piece, three years ago- has it been so long?- I was pretty clueless about how many people 1. really did think this was "happening to them" and 2. saw no hope or future for their loved one. People definitely need to see the potential, and get to a point in understanding autism where they can see the potential and go for it.