Greensburg Daily News, Greensburg, IN

Opinion

May 30, 2013

Mother gives opinion on raising an autistic child

Greensburg — Raising an autistic child is a challenge and a full-time job all its own - not to mention raising two other non-autistic children. When I got that fearsome diagnosis after noticing my child acting strangely, no one told me what it would mean for the future or the hardships I would watch my child struggle with. No one told me the pain I’d suffer as I saw others judge my son for something he had absolutely no control over. But I also wasn’t told about the moments of joy when he achieved even the smallest goal, or the intensified love he showed for me. These are the moments I focus on, the moments I live for.

My son Aarik was diagnosed with autism when he was two years old. He was a normal, happy, healthy child for the first two years of his life. But shortly after his second birthday, Aarik started to change. He began withdrawing into himself and interacting with the outside word less and less. He would stare through me when I tried to talk to him, as if I weren’t there at all. Aarik didn’t speak, either screaming or pointing to communicate what he wanted. He wouldn’t even flinch if a loud, sudden noise went off behind him. It was like he was in his own world. We had his vision and hearing tested, but there was nothing physically wrong with him.

Aarik started having fits where he would scream for hours and nothing could calm him down, which I later learned was called a "meltdown." His behavior became stranger and more frequent until I was left with no option other than to admit that something wasn’t right with my baby.

The next step was to contact his doctor. She examined Aarik and recommended that we see a child psychologist. Despite my fears over what we would learn, my husband and I made the appointment.

The day came and we met with the psychologist. She asked questions that didn’t make sense to me and watched Aarik play with toys and interact with my husband and I. The doctor said most of what she did was part of a behavioral test. The whole thing only took two hours and then we were forced to wait for the results.

About a week later, I got a call from the doctor’s office. They told me that after grading Aarik’s scores, he qualified as autistic. At that time, I knew nothing about autism. I dove into research, wanting to be knowledgeable about the disorder my son would carry with him for a lifetime.

My heart sank as I read more about autism and the difficulties afflicted children and adults struggled with. Almost immediately, I knew my son would be treated differently and there was nothing I could do to stop it. Already, he didn’t enjoy outings and had a hard time playing with other children.

I contacted First Steps, an organization that does in-home therapy for children under three years old. From his diagnosis to age three, Aarik received occupational, physical, and speech therapy in our home. Each one was an hour long once a week. I was a stay-at-home mom at the time, with newborn twins and a four year old to care for, in addition to Aarik. Some days it was all I could do to manage the therapy and the other kids. I lived in a state of exhaustion.

I learned that his autism acted like an amplifier for his emotions. In addition to the autism, Aarik was diagnosed with a sensory delay. When he went into one of his meltdowns, he was being trapped in a loop where his feelings kept getting amplified and he couldn’t stop. A simple touch could feel like a cut at these times and watching him in that pain and not being able to help was devastating.

When he aged out of the First Steps services at three, we were left with no choice but to discontinue therapy. Our insurance didn’t cover it and we couldn’t afford the $80 an hour fee for one therapy, let alone three every week. I did my best to continue therapy at home, but eventually Aarik started to regress.

Shortly after his third birthday, we moved, which was traumatic for all the kids, but was devastating for Aarik. To make matters worse, two weeks after we moved, one of his twin brothers passed away in his sleep. Our entire family was shattered and Aarik didn’t have the ability to understand why or where his brother had gone. He backslid further and I was powerless to stop it. He began making tiny improvements over the next two years, but I was so broken from losing a child that I wasn’t as much help as I could have been.

Aarik’s salvation came when he turned six and was old enough to start school. He was enrolled at South Decatur Elementary School (SDES) and put in Krista Bartoz’s special education class. We developed an Individual Education Plan for Aarik and started the long process of teaching him to interact with other people. He is very stocky and strong and has a tendency to play too hard with other children, often hurting them unintentionally.

Aarik is nearing the end of his first year in school and I could not be prouder of him. The first half of the year was mostly about teaching him how to be in school and around other kids. Watching him struggle with his instincts and the new rules was heartbreaking at times, but it was worth every second.

He speaks very well now and is even learning to read and write. The special education staff at SDES is beyond amazing. They gave me my happy, loving child back. They didn’t just teach Aarik ways to deal with his autism; they taught me how to help him grow and learn.

He’s not at all the same child he was when he started the year and the improvements will continue. I can’t wait to see who he is next year. He hasn’t had a meltdown in months and is able to make friends and tell me about his day. Yes, my big man is a handful... of love, laughter and joy. And I wouldn't have him any other way.

I continue to take delight in the small things and let everything else go. I have to focus on the good, because everything else will pass and the good is all that matters.

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