April 3, 2008 § Leave a comment
Since we don’t have cable we didn’t catch any of the spots that CNN did on autism yesterday. Rachel had an appointment with her psychiatrist this morning and I spoke with one of her case workers. We talked about autism in the media. I am mostly annoyed at the way the media reports on autism in that what I see reported doesn’t reflect what I see in severely autistic young people, including my daughter. Rachel’s caseworker is more annoy about how treatments are always “over promised” leaving parents without the means to try every new thing feeling as though they have failed their child.
CNN’s videos can be seen here. It is hard sometimes to watch parents talk about their autistic children. All our situations are so different and yet there is this string that runs through so many of the stories. Of course I identify with the parents who’s children are teens. I wish though there could be a few more stories about how very, very difficult it can be to deal with autism in the more sever forms. Oddly enough Law and Order once had a show about abuse at a treatment center for autistic youth with self injurious behaviors. I think this is the only time I have seen that end of the spectrum represented, and it wasn’t even represented that well.
February 8, 2008 § 5 Comments
Being the nerd that I am I like to look at my blog stats to see how people get here. The autism post early this week has led to some interesting searches finding me. Phrases like “Autism parents despair”, “My autistic teen” and “Autism failure” have popped up in my referring searches. I want to say hello to those who have found me because of the autism article and I think I have a little more to say.
My daughter Rachel is 14 and lives in a residential house for autistic and behaviorally challenged teens. She has been there almost two years. We are very luck to have a house that meets Rachel’s needs and is so close to us. Rachel takes two types of medication for her autistic symptoms and a third to suppress seizures, she has only had one, but it nearly killed her and we are disinclined to take any chances. Rachel’s current situation is a case study in “never say never”.
Not so many years ago I claimed I would never medicate my child to deal with her behaviors. I was also certain that I would never place her in an institutional or residential placement. Then puberty approached and that all changed. Autism for us has been a series of coming to terms with things only to have to come to terms with them again. When Rachel was first diagnosed she was classed as mildly autistic in most areas and severely autistic in language, especially expressive language. Rachel was always affectionate, you could get her to look at you, she had imaginative play, but the ability to communicate wasn’t there.
The experts I talked to couldn’t tell us much. They have therapies, medications, diets, treatments and a variety of strategies, but they also would say, when pushed, that no one knows what exactly will work or not for each child. I remember one psychiatrist saying “support groups for very young children with autism are always so hopeful. I have never met the parents of an autistic three year old who didn’t say their child was ‘mildly’ or ‘Moderately’ autistic. By nine that changes.” He was so very right in that. A mildly or moderately autistic child will likely respond to early intervention and be able to function reasonably well in a class room and life in general. I have met some parents who tell me about their autistic four or five year old who is doing school work a year ahead but has some social quirks. I don’t doubt they have a diagnoses of autism, but our children are on different ends of the spectrum. Eventually those of us with severely autistic children have to face that this is the hand we’ve been dealt.
There are those parents who are firmly set in denial. The parents who’s three year old child is licking the carpet and has three functional words and say their child is “mildly autistic”. I think I was one of them. I kept hoping things would get better. We did the therapy, the special classes, the in home therapy. The whole gambit. It is draining both for the parents and the child. But you have to do it because, everyone tells you, this is the only hope for your child. And it is hard to stop at some point and say “This isn’t working”. Some parents stop later than others. I met a woman and her nine year old autistic son at the pool last year. He was non-verbal, he occasionally hit himself in the head while his mother and I were talking, he couldn’t follow basic directions. Mother claimed he was “moderately autistic” that he was doing behavioral intervention, and had been since two and that it was working really well for him. She was sure he would lead a full and active life. My heart broke for her.
My heart breaks for myself as well some days. I go through phases where things seem hard and then seem better. But I can always look back at some words of wisdom offered by a friend of mine. “Darcee,” he said, “don’t be sad for Rachel, there is no reason to feel sad for her. She likes herself, she is happy most the time as happy as most kids her age. The person you are feeling sad for is yourself, Rachel is fine.”
And that was so true and still is. Rachel has times where she is upset or sad. But so does any 14 year old girl. She struggles at times with letting people know what she wants and how she feels. More so than most her peers, but her life is also somewhat more simple than theirs. I worry for her, what will happen to her if she out lives us. How will we provide for her care. But those are my worries not her’s. Rachel’s life looks very different from her peers’ lives, but it isn’t a bad life and it is her’s and she is mostly happy.