Sunday, June 10, 2007

No Joy of Autism, A Mother Tells of Daily Life With Autism

Sigourney Weaver may be looking for her "inner" autism. Parents of autistic children do not always have that luxury and most would not seek to find their "inner" autism or any other autism if they had a choice. But we do not have any such choice.

As parents, we know first hand the truth about autism. We experience the reality every minute of every day. We do not have to go searching for autism as some type of flaky Hollywood enlightenment trip. Autism has knocked on our doors, it has knocked our doors down and it has taken much of what we hope for in our children. We love our children dearly. That is why we feel the realities of autism so deeply. Our autistic children do not experience life fully the way Ms. Weaver does. She can hang out with some high functioning autistic adults and experience her inner autism with them. As parents we have to live with, and help, our children overcome their serious challenges to the best of our abilities and try not to think constantly about what will become of them when we are gone.

Denise Pavone-Brooks is not a flaky Hollywood actress but she is the mother of an autistic child and she has plenty to say about the reality of autism. Maybe Sigourney Weaver could take time from searching for her "inner" autism to read and think about what this mother has to say:

The Emotion of Autism

Daily life with an Autistic Child.

by Denise Pavone-Brooks
June 9, 2007 12:54 pm ET

As a young and ignorant mother, I feared autism. I thought, as most of us do (or hopefully, did), that it involved a child totally consumed in his own world that spent his day rocking back and forth. It wasn't until my verbal and affectionate three-year-old son was diagnosed that I realized how wrong I was.

However, there is still reason to fear autism. There's no cure. And since no one dies from it, the search for a cure or even an effective treatment has been painstakingly slow. Autism is horrible. It has robbed my son of all the things a child should have - soccer games, birthday parties, academic achievements - You get the idea. It broke apart my family. His older sisters will probably have to care for him after his parents die.
Last week, my old handsome son (now ten years old) exhibited "mal-adaptive" behaviors, which resulted in gifting me with the pleasurable sensation of two bites, several head butts, kicks, slaps and hair-pulling. One bite was through the skin, so I had to get a tetanus shot. I refused to go to the doctor until I was certain the bite would not be reported to the authorities.

There are happy times, but probably not what you'd expect. For instance, he loves to play with ribbon or anything long that he can pull through his fingers. He likes to bring his ribbon (which he calls "string") with him when we go places. Most kids grab a teddy bear – my kid is cuddling a messy ball of ribbon. He also loves water – either being in it or watching its movement – it doesn't matter. I've wondered if he shouldn't have been a fish. He likes animated movies, and will watch his favorite scenes over and over again (damn that rewind button!). But the coup de grace is French fries. No one is allowed to say the "F" word around him unless we KNOW we are going to get French fries! In fact, on his birthday, I put the candle in his French fries instead of in a cake.

One of my most tender experiences occurred a few months ago, when he had learned how to tie his shoes by himself. In the beginning of my weekly women's church meeting, we have an opportunity to share any good news with our sisters. Impulsively, I raised my hand and announced, "My nine year old autistic son learned how to tie his shoes." A chorus of happy gasps and wild applause filled the air. Still brings tears to my eyes when I think of it.

I love my son more than words can express. My heart aches for him. At this point of despair, I have two choices: I could be forever bitter, or I could hope for better things. I guess I'm doing some of both. I have to admit I'm somewhat bitter, but I try not to spend too much time on the "why us?" question, or play the "blame game." That's just not a productive or positive use of my time. The rest of my activities are guided by my love for him and my religious faith. I do believe my son has a one-way ticket to a glorious after-life, and if I want to be there with him, I need to act as if I deserve it here.

You are probably wondering why I cannot control my child. The truth is, he cannot help it. He is brain damaged. No amount of behavior modification will completely "fix" his brain. He is unhappy. He does not know why he is unhappy, which makes it worse.

What is the point to this article? I'm not sure, except that I feel a little better for writing it. In fact, I think I will write on a regular basis. Maybe it will help others in a similar situation, maybe it will help me cope, but mostly I hope it will help people with autism and their families.


Estee Klar-Wolfond said...

There is a very important discussion going on on Susan Senator's blog about a parent's emotions versus how it effects an entire community. Where emotions can feel real, they are fleeting and expand when we examine our inner bias' and expectations. Our feelings as parents must be worked through. Because they can end up hurting the ones we love.

To ignore in a dialogue, either side or even CONSIDER how the disabled feel about how they are discussed, is not going to help anyone. It will only lead us down the path of ignorance.

Unknown said...

"To ignore in a dialogue, either side or even CONSIDER how the disabled feel about how they are discussed, is not going to help anyone. It will only lead us down the path of ignorance."

Try thinking about those who are autistic and can not express how they feel. They are not represented by the internet writing highly expressive persons from whom you seek guidance.

Ignoring the realities of life for severely autistic persons like my son is not just a path to ignorance; it is a path to denial of a fuller life for my son and others like him who do not share the communication gifts of those whose opinions you hold so dear, the same people who oppose treatment and cure of my son's severe disability. Try considering those facts.

And if you want to see the joy in my son don't look to his autism look to him: