I am Kim Clark from Kentucky and this is the Story of Autism about my dear daughter, Ashley.
I married my high school sweetheart David in 1983. We waited awhile to start a family. Our daughter Ashley was born in 1997. She always had good reports from her doctor and it was awhile before we knew something was wrong. She said a few words. like mama and daddy, but then did not say them again for months.
She was learning a little bit of language, but quickly fell behind for her age in that area. There were some signs that we totally missed because knew nothing about autism. Those signs included the lack of eye contact, hand twisting, spinning, tantrums and lack of sleep. We did get worried about her lack of language and voiced our concerns to her doctor at her checkup. Her doctor said that it was normal for some children to talk very late and that she was fine.
I asked when we should bring her back for another checkup and was told to bring her back in one year. We followed the doctor's directions. When we took her back for her annual checkup we again voiced our concern that she was only saying a couple words and appeared to be very far behind. The doctor said that she did not think there was anything to worry about, but to make us feel better she would give us referrals for a speech and hearing evaluation.
Ashley had to go through several hearing tests. She was sedated for an auditary brain response. Her hearing was fine. The speech therapist was not sure what was wrong and referred us to an evaluation center.
At age 3 1/2 Ashley was diagnosed with autism. We began educating ourselves on the Story of Autism and its treatments.
The first thing we wanted to do was start speech therapy. Our insurance turned us down and we did not have the money to pay for it. I read that early intensive ABA therapy had reclaimed some children. However, insurance did not cover that either and it cost more than we made at the time. I was at a loss on how to help her.
Our state has a first steps program. But she was already too old for it. We enrolled her in our public school system's Pre-K program when she was 4 years old to get free speech therapy through the special education system. It was not the type of therapy that she needed, but the only thing we could give her.
Occasionally I was able to get her into a waiver program with Medicaid benefits. Ashley had some extra speech therapy on and off since then. We had her re-evaluated a few years later to see how much she had improved. We were told that the diagnosis of autism still fits and in addition to that label they added the label of mental retardation. We were told that she must learn slower because she was so far behind for her age. They said that she will never be independent and will always need some type of services.
We had heard of the gluten-free casein-free diet and how some children had recovered with it. I found all the information that I needed to start the diet on the Talk About Curing Autism website. We were not successful in implementing it. Ashley was so set in her ways by then. She was pushing other children at school and trying to take their lunch from them. She did not understand why she had to eat only a lunch from home and why she could not eat the pizza that everyone else was eating. We gave up. I do not know if it would have helped her or not.
There have been other challenges along this journey. She had her first seizure at 9 years old, which landed her in the hospital for a few days. The seizure could have been life threatening. It did not stop until she was given medication. By that time she was so unresponsive, she looked like she was in a coma. The doctor said that Ashley had almost completely stopped breathing. She was checked for brain damage. There was none. Ashley has had more seizures since then, but not as bad as the first one. She takes a lot of medication every day for seizures, behavior and sleep.
There are times when we get discouraged when we reflect on Ashley's Story of Autism. I often wonder if it was my fault. Did I use too many household cleaners while I was pregnant? What about the cold medicine I took that one time? I have a really bad cold which caused my asthma to flare up. I had to use the inhaler once. I called the doctor before using it. She did not say it was safe. She did say if I can not breathe, then the baby could not. I know many children have autism and their mothers did not all use inhalers. I know it does not fault, but can not help sometimes having thoughts like that.
When I see the videos of children that have recovered I am very happy for them, but at the same time it really hurts. I can not help but feel we have not done enough to help her. One thing that helped me when I was discouraged, was an article on the Talk About Curing Autism website entitled, “Does The Window Ever Close?”
At the time of this article, Ashley is 13 years old. She is very happy. She enjoys art, stuffed animals, the computer, pre-school age shows on TV and You Tube. She is still in the special education class at school and receives in home speech therapy twice a week. She is somewhat verbal. She can ask for things verbally, but can not carry on a conversation. She does not comment or ask questions. At age 13, she is still not fully potty trained, although she has made a lot of progress in this area. She has sensory issues which keeps her very limited to which clothes she will wear.
It breaks my heart that we were not able to provide the early intensive intervention that she needed. She shows a lot of potential and I believe that ABA therapy would have made a huge difference. She could have been one of the success stories. We certainly need to have more autism awareness and earlier diagnosis, so other families will be able to get the help they need as soon as possible.
If autism has touched your life, I would love to connect with you.