Our Child With Autism

Restored from the Empower Network archive (2011–2017), lightly edited to meet our current advertising standards. Views are the original author’s.

This blog post is about our child with autism, Ashley Clark.  I believe it will help and inspire other families.

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 I totally missed because knew nothing about autism.

Those signs included the lack of eye contact, hand twisting, spinning, tantrums and lack of sleep.

I did get concerned 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 I should bring her back for another checkup and was told to bring her back in one year. I followed the doctor’s directions. When I took her back for her annual checkup I again voiced my concerns that she was only saying a couple words and seemed to be very far behind.

The doctor said that she did not think there was anything to worry about, but to make me feel better she would give a referral for a speech and hearing evaluation.

Ashley had to go through several hearing tests. She was sedated for an auditory 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. I began to educate myself on
Treatments for autism.

The first thing I wanted to do was start speech therapy. My insurance did not cover it, and I did not have the money at that time to pay for it.

I read that early intensive ABA therapy had recovered some children. However, insurance did not cover that either and it cost more than I 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.

I 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 I could give her.

Eventually I was able to get her into a waiver program with Medicaid benefits. Ashley has had some extra speech therapy on and off since then.

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 I get discouraged. I have thought that maybe this was my fault. Did I use too many household cleaners while I was pregnant? What about the cold medicine I took that one time?

When I was pregnant with her 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 cannot breathe, then the baby could not.

I know many children have autism and their mothers did not all use inhalers. I know it not my fault, but cannot 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 cannot help but feel I have not done enough to help her in the past.

It breaks my heart that I was not able to provide the early intensive intervention that she needed. She has a lot of potential and I believe that it would have made a huge difference.

Ashley is now 16 years old. She is very happy. She enjoys art, stuffed animals, dolls, her laptop, TV, and You Tube.

She receives in home speech therapy once a week. She is somewhat verbal.

She can ask for things verbally, but cannot carry on a conversation. She does not comment or ask questions.

She is still not completely potty trained, although she has made a lot of progress with that.

She is finally now going to get what she the therapy she needs. My husband, Kevin Sousa, and I have a successful home business.

We recently were able to buy an ipad and install apps that are very helpful.

She has also been accepted to a private school for autism. This school has the intensive ABA therapy that she needs to reach her potential.

Thanks to our business we made a deposit and she will be starting there this next school year in August.

It is a dream come true.

If autism has touched your life, we would love to connect with you.

Kim and Kevin Sousa