Family/Aspergers

Autism Is My Life

by Fran (a guest writer for Spectrum Homeschool)

Even while in my tummy, he had a quiet personality. Didn’t move much. Sometimes I had to poke around and bug him to get him to kick and turn. However, he didn’t like being in there. Pre-term labor set in at 27 weeks and I was hospitalized. I was already on bed-rest at home due to placenta previa that set in early in pregnancy. Oral and IV medication did not keep my little warrior from entering the world at 33 ½ weeks. All my fears vanished when the beautiful song of a baby’s cry filled the air. Ethan was premature but he was strong and healthy. Life could not be any better.

Ethan was different.

As seasoned parents, my husband and I knew there was something to this kid that was not like our other previous babies. He didn’t cry much. He laughed little. Fed differently. Ethan crawled, sat up, and walked later than most kids. At 18 months, his vocabulary consisted merely of mama and dada. We very seldom heard those words, anyway. We took action immediately.

Ethan received intensive Speech Therapy and Special Education immediately. We started using sign language to communicate his needs. Using his hands to communicate seemed easy for him. He caught on quickly and did well with sign language.

Besides his lack of speech there were other things we were noticing that were out of the ordinary. Ethan would take his cars and trucks, sit in front of the table and seemed to hypnotize himself watching the wheels move back and forth. He would play with a specific car endlessly and get lost in a world parallel to mine. As if he was analyzing every millimeter the car moved. He appeared mesmerized by it.

By the time Ethan was three years old, his speech had made slow progress and the above mentioned behavior continued along with tantrums. But these were not tantrums, these were total meltdowns. It was very difficult to soothe him. Following the recommendation of his Special Education teacher he had a series of evaluations and tests performed by a pediatric psychologist. He was diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified (PDD/NOS), a form of Autism.

The next few years were filled with trial and error in behavior modification and quick anticipation of needs and possible stressful situations. Ethan is eight years old now and is quite a bright young man. Our house runs on a schedule were things are done at a certain time and a certain way. We rarely deviate from the normal, as he does not take change very well. He still has his meltdowns. When he was younger, and he started trashing around screaming and kicking, we would sit on the floor with him Indian style and wrap him in a tight hug. It brought him comfort and security. Within a few minutes he calmed down. These days tight hugs are still welcomed, but when we see a meltdown coming we immediately remove him from the situation and distract him with something he likes, such as the computer, videos games or his mp3 player. He is very tech inclined. A breath of fresh air always clears the atmosphere.

We keep his favorite clothes and shoes on hand. We stock up on favorite meals and snacks. His favorite games are quickly found and his frequently visited websites are handy bookmarked. We travel the same route when we go see the dentist, afterwards the same restaurant is always anticipated. We do this to prevent a crisis.

We do not like leaving Ethan with babysitters as we feel no one understands Ethan and the things he does. Plus, we know Ethan will persevere endlessly about when is Mom and Dad going to be home. Why add to his daily struggles?

Recently, Ethan changed pediatricians. We felt Ethan’s plan of care was not moving in the right direction. Our new pediatrician actually took the time to go through “Ethan’s Book”. It consists of every single medical, psychological, developmental evaluation and test done during the past eight years, as well as every progress note. It turns out, Ethan does not have PDD/NOS but Asperger’s Syndrome. The new diagnosis came more as a relief. A relief because we felt he didn’t quite fit the PDD/NOS criteria anymore, but still had obvious signs of autism. Growing up he developed the symptoms of high functioning late onset Asperger’s Syndrome.

Some people say we don’t have a life. They say we don’t step out, that we are young and we don’t have fun. To those people I say: Yes, we do have a life. And we love it just the way it is. We feel chosen. Having a child with Autism has taught our family acceptance, humbleness and self-advocacy. Autism has taught us to find happiness in the smallest of accomplishments. It has taught our children to stand up against bullying and empower those who can’t.

Some people ask us if we had the chance, would we change Ethan? Of course we would! No parent wants to see their child struggle with everyday life! We can not change Autism but we can accept it. Autism will be a part of us, for the rest of our lives and we have embraced it. We have learned to get through the not-so-good days and enjoy the never ending beauty of the spectrum.

Since he was diagnosed, our life has been full of IEP’s (Individualized Education Program), teacher meetings, therapists, and most notably support and activism for our son‘s needs and education. You have to advocate for your child. No one is going to do it for you with the passion only parents and caregivers bring to the table. If you are not pleased, keep pushing, move on! Never accept a situation you are not fully satisfied with. Speak up and be loud. Research. Drench yourself with all the information available out there (But discern between scientific information and plain nonsense!)

You know what is best for your child. Make yourself heard!

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