Saturday, November 11, 2006

The most devastating thing

Here are some quotes from two recent media stories, from two sets of parents, about their children:

First set:
"I try not to dwell on it ... I try not to look at my kids like they're sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children."

Second set:
"I started crying and I was just sobbing because I thought there wasn't anything I could do about it... The child you thought you were going to have really dies when you find that out. You've got to become acclimated and accepting of the fact that that person is gone... it was the most devastating thing you could imagine... The public needs to get it that this is a common, expensive and devastating disease that needs the full attention of society."

Well, it's not hard to spot the second set of parents as having an autistic child. The media story is about these parents' "anguish". Here's how their devastating autistic child is described:

Jon likes activities such as rollerblading, swimming and, most recently, riding his new bike. Jon, who has three older sisters, also loves to read. "He seems to read better than he talks... It comes easy to him, so we're trying to run with it."

The first set of parents don't have autistic children, though at one point, one of their children received an autism diagnosis, which turned out to be incorrect. Here is how their non-autistic children are described:

Five-year-old Jamie and two-and-a-half-year-old Carson have Batten disease, a fatal, inherited nervous system disorder that causes the brain to shrink and shut down over time, eventually robbing its young victims of their speech, sight and motor abilities. There is no known cure or prevention for it... Jamie can't speak, see or move much on her own anymore. She has to be fed through a tube and carried wherever she needs to go. Although still sighted and mobile, Carson has lost the few words he had picked up, including "mom."

This story finishes with a short, accurate (so far as I can tell) section of information about Batten's, including that children don't live longer than 8-12 years, 20 at the outside.

In Canada there are autism advocates, including political leaders, who claim there is no worse nightmare for any parent, nothing more devastating, no worse anguish, than to have an autistic child. They also claim that autism is the most severe of all neurological disorders, that is, it is worse than fatal childhood neurological disorders like Batten's. This distortion of reality accurately reflects how they see autistic lives.

Jaime and Carson's parents have been through a lot. Their first child died at one month. Their two other children have a fatal condition. The only treatment offered that might prevent them from dying is very experimental, unproven, expensive, and dangerous. Here is the only statement alluding to the care required for these children, neither of whom speaks, one of whom has no self-care abilities at all:

Keeping's Aunt Suzy and two home care workers help out with Jamie's and Carson's care.

I don't know where the calm, dignity and grace shown by Jamie and Carson's parents comes from, but they provide a perspective that's completely missing from the hysteria surrounding the supposed autism crisis.

14 comments:

Joseph said...

John: Those parents don't have any luxury. That's just sick. You're implying it's better to be dead than autistic, again.

When it's convenient to you, your son is right around the corner to recovery. When it's not convenient, he's so severely autistic that he'll have to be "sent away" (your term).

Michelle Dawson said...

Sorry Joseph, I'm deleting all of Mr Best's posts without trace, so there's no need to respond to him.

mumkeepingsane said...

I said to my husband at the moment of diagnosis, about my son, "Thank God he doesn't have something fatal like cancer".

I picture all the mum's sitting at the side of hospital beds watching their children die. And then I look at my son, so happy, so full of life...in my mind there really is no comparison.

Tera said...

Thanks, Michelle, for pointing out how society sanctions the idea that autism is "devastating," and encourages parents (and lawmakers) to feel that way.

The child you thought you were going to have really dies when you find that out. You've got to become acclimated and accepting of the fact that that person is gone... it was the most devastating thing you could imagine...

All parents have children who are different from the child they imagined themselves having. If
you ("general" you) imagine that you'll be taking your child to Little League games and basketball games and soccer practice, etc., and your real child doesn't like all those things, your imaginary child will have "died" whether your real child has a disability or not.

Letting go of the child you wanted to have and embracing the child you *do* have is part of maturity. It's sad that parents of autistic children are encouraged to hold on to fantasies that other parents move past.

mcewen said...

Is there a parent who 'received' the child they were 'expecting'?

Mom26children said...

Ms. Dawson,
My husband and myself not only heard your child has autism on one occasion, but on five different occasions. You see, we have 5 autistic children. Each one as unique and individual as the other. 2 are severely autistic, 1 has Asperger's and 2 have PDD-NOS.
Never did we pity our children. They were always treated as our NT child. They are educated in public schools with full inclusion in regular ed. classes.
We are so proud of them. They have shown us that being different is okay.
Parent's who want normal children do not know what they are talking about. There is no such a thing as "normal".

andrea said...

mcewen said...
Is there a parent who 'received' the child they were 'expecting'?

I did; I was expecting a human baby (just one) that would have some combination of dad's and my features, and that's what we got!

I hoped the baby would be healthy, and was. I hoped I wouldn't run late again and have to be induced, but I did. I hoped I wouldn't have to go through back labor again, but I did. So yeah, some minor disappointments. And, some surprises, like the pointy ears (we joked that's what you get for watching Star Trek reruns during early labor).

The child is a great kid!

Kassiane said...

Michelle:

This really needs a wider audience. Preferably widely read newspapers, but based on the oh so educated comments we've all grown to know and...roll our eyes at, I don't know if that's possible in this era of autism hysteria.

Good post. REALLY good post. Way to put things in perspective.

Michelle Dawson said...

Thanks, Mumkeepingsane, Tera, McEwen, Mom26children, Andrea, and Kassiane, for your comments. I wish it were always clear that only some parents of autistic children consider their existence to be devastating, etc. Mostly I'm concerned about what distorted views of autism do to autistic kids. The autistic boy, Jon, is apparently very good at reading, as are a lot of autistic kids. I hope he never has to read the story in which his parents make it clear he is not at all the child they wanted.

Anonymous said...

Electric Shock Therapy might do you some good.

Michelle Dawson said...

I think I'll leave that last comment (of a long series) in place. It's an accurate representation of autism advocacy, in some or many of its forms.

J.Carter said...

For those of you who get it...congrats...for those of you that don't get it...boo-hoo-hoo for you, and shame on you. When you have something "real" to complain about then say so. You cannot compare Batten's to Autism. I have Batten's child with Late Infantile diagnosis. This is still quite different from the Juvenille form of Batten's for those of you that don't know. To watch your child die slowly before your eyes and suffer in silence is in no way a comparison to a child with a disorder that is still able to "do" things. Sure their life has it's difficulties, but not like my child's. To watch them go from being able to walk to go to a walker and then a wheelchair to being totally immoblie, from having sight to becoming blind, to having speech to becoming mute, to being able to feed themself to having a feeding tube, to being able to control your bladder and toilet yourself to having to be diapered, to being able to control you own saliva and swallowing to constantly choking and having to be suctioned numerous times a day...this is what a Batten's child loses. Having to watch your child slowly being taken away from you and not being able to stop it, is a parent's biggest heartbreak. For anyone to compare Batten's to Autism need only step in my shoes and get a reatity check of what life is about. I only wish my son was diagnosed with Autism. Sure they have their difficulties, but at least they know they can survive childhood...my child is being robbed of anykind of childhood. I still find joy in his smile and rare giggle and I treasure these more than gold...can you say that of Autism. When someone wants to complain about something they should think twice before complaining about the hardships Autism brings...I wish I had some hardships to complain about. For all the Batten's kids and their parents we only wish we were dealing with something less heartbreaking. My other younger son is horrified that his brother will one day die leaving him alone. Can any of you tell me what to say to him that can make it better. I don't think anyone can tell a 7 year old anything that will make it better. I have a difficult time knowing we will lose him to this horrible disease myself.

Ettina said...

"For those of you who get it...congrats...for those of you that don't get it...boo-hoo-hoo for you, and shame on you. When you have something "real" to complain about then say so. You cannot compare Batten's to Autism. I have Batten's child with Late Infantile diagnosis."

My grandmother died of ovarian cancer when my mother was only 20. Seeing the effect that losing her mother so young had on her, I'm shocked that anyone can claim autism is at all comparable.
My heart goes out to you, and I wholeheartedly support a cure for Batten's disease, cancer, and other fatal diseases.

Julia said...

There's a mother in my town who had a 10-year-old with autism, and then he was diagnosed with leukemia.

He died.

The cancer was a lot more devastating than the autism ever was.