A mother's denial, grief and joy at the VIP world of autism

Miranda Steffen

When Aiden was VERY young [less than a year], his father and I would talk to him in what we called our "Minnie Mouse voice." We later found out he could barely hear us due to the fact that he had repeated ear infections for, basically, his entire first year of life. Amazing enough, he could beat his spoon to any beat that he heard by the time he was 6 months old as long as it was a deep bass. We thought he was a musical genius, and would call the grandparents listen to him tap. We never mentioned all of the other milestones he was missing. He was sick all of the time – wouldn’t that delay anyone?

It was during this time that Aiden lost a lot of his sounds. His cooing stopped and the gibberish WAS audibly different. We chalked it up to hearing loss, but hindsight is 50-50....especially in the world of autism. Aiden never had vaccinations on time due to all of his illnesses so I don’t feel like HIS autism is a product of vaccines, but that’s not to say that vaccines haven’t affected others. I remember his sonogram. His head size showed his due date 2 weeks before his body size did. A red flag of autism is a large head. In fact, his pediatrician even sent him to for a CAT scan because his head was so large. They worried that he had water on his brain, but not ONCE did we hear the word "AUTISM." It came out fine and we never heard about it again.

The first person to utter "autism" to us was our SoonerStart SLP, Patti. Next was my sister in law at Thanksgiving. Both times I got very offended. I canceled the next two appointments with Patti and told Crystal to leave it alone – that she was full of shit. The older Aiden got, the more milestones I saw pass by. At 12 months he wasn’t walking. His first word wasn’t “mama” or “dada” it was “ish” for “fish.” He used to stare at the aquarium forever. I thought it was just calming. Now, I know it was a world easier to focus on than the one around him.

I had quit my job to stay at home with Aiden and his older brother, Phoenix, who is four-and-a-half years older than him. When Aiden wouldn’t play with me the way Phoenix had, I thought it was because there was a big brother to compete with. When he stared at corners of the walls and babbled, I thought it was cute and told people he talked to ghosts (we are avid fans of ghosts and spirits in my family). When he became fascinated with washing machines, I assumed that he was a stay-at-home kid who watched Mommy do laundry 9 million times a day. I would sit down to play with him and he would walk away, I chalked it up to being boring. “I just need to kick it up a notch,” I said to myself. So we joined playgroups and Kindermusik. After all, this kid LOVED music, right? Wrong. He would scream in class when he had to sit down until they played music with a strong beat or they played Baby Burrito. This is where they lay down a sheet, and a kid lies on it. They pick up both ends to make a hammock and then swing the child. Aiden loved it and wanted it all of the time. After the first day that he did it, he came back expecting it over and over again. I assumed he just needed more social interactions and structure. Unbeknownst to me, he was creating his stims and routines.

By this time, my marriage was buckling under the pressure. Of what, we didn’t know. His father started working late and I became resentful that I was home all day with a child who wouldn’t play with me. Hard as I tried to engage him, he was just uninterested in me. I bought toys, took him anywhere and everywhere deemed “fun,” but he was more interested in spinning in circles or staring for what seemed to be hours at a rock he had just found. I remember a particular night where his dad came home and I was crying and told him something was wrong with Aiden. “You just need to try harder,” was his response. I picked up the keys and left. I drove to his father’s shop, let myself in, and called my mother. I cried for three hours. My marriage was failing, my youngest son hated me, and my older son was being, at best, neglected in the midst of our chaos. Was Aiden the cause of our divorce? Never. Was my world spinning out of control? Definitely.

Aiden turned three on a Friday. That Monday, he started going to a DD (developmentally delayed) public school class for 3-5 year olds. His IEP stated “speech delay,” but there was something in the back of me that knew more was going on. About a month before his third birthday, a friend gave me a Tony Gazelle glider that she didn’t want. When her husband brought it in and set it up, Aiden started screaming at the top of his lungs because it was moving back and forth. I tried calming him down, but he was hysterical and obviously terrified. It became so bad that he literally passed out from panic. I held him, passed out in my arms, and had Phoenix and his friend that had come over to play to move it into my bedroom while I called my friend to come pick it back up. This could not be in my house.

When I left his father, I got a job at a non-profit organization as an administrative assistant at their child care facility. Aiden was three and a half. We had a counselor on-site who set me up with a diagnostic nursery. A panel would watch Aiden for six weeks, and then meet with us to give a diagnosis. While he was being observed in a playroom, Phoenix would talk to counselors and/or go “play” with Aiden for observation. His father and I were quizzed about family history, Aiden’s history, pregnancy history…the list goes on. When one psychiatrist on the panel did a home visit he asked me, “How do you think you would feel if Aiden was diagnosed with autism?” I replied, “You can’t go to a support group for ear infections. I know there is more going on with him and I want an answer.” He wrote something down and I knew at that moment we were entering a strange, new world. When we met the next week and he was diagnosed, I burst into tears. Knowing was one thing. Being told by a panel of experts was another.

We were thrown into his world and learned a plethora of new language. By now, we had learned SLP and IEP, but we learned new words and abbreviations like ASD, OT, PT, GFCF, sensory seeking, sensory overload, play therapist, and stimming to name a few. I found out that all of his quirks served him a purpose – it got him through his day. I reminded myself that I still had the same child, but it was scary. Kids don’t come with a manual, but when you throw autism into the mix you sure wish that they did.

I found myself going through the five states of grief:

Denial: this can’t be true. He had ear infections and that’s why he doesn’t respond to me the way other kids typically do. Better tubes will fix this.

Anger: Why me? Why him? Why us? What did he ever do to deserve this? This isn’t fair.

Bargaining: Please God, fix this and I will be a better person. I’ll go to church and feed the hungry. I’ll donate all of my canned goods at any food drive, be a better person. Anything.

Depression: I cried. A LOT. I gained weight, and when I had a second to go out with my friends, I drank. A lot. Filters were off. I DESERVED a night out if anyone did. I stopped visiting with friends with “typical” kids because it hurt too much.

Acceptance: I had to acknowledge that this was not a death sentence. I stopped comparing him and instead focused on the positive. I had a child who loved me unconditionally. With therapy and diligence from me, his father, and our friends and family, Aiden was emerging from himself and becoming a beautiful child. Where he once scared me, I welcomed his idiosyncrasies. I came to realize that I had to stop comparing him to “typical” children. He was his own self that laughed and loved. He was an expert headstander and would repeat things he had heard that brought laughing tears to my eyes. I replaced sadness with laughter.

Flash forward: Aiden is now six and a half. When he wakes up, he sings me the “Good Morning” song. He likes to do everything by himself. He grabs a bowl and pours himself cereal and milk, and then takes his bowl to the sink. He dresses himself, and although wearing anything with buttons is a battle, he does it independently nonetheless. I hate belts. He hates buttons. It’s not a matter of life or death anymore. He will be repeating kindergarten this year, but he isn’t the first child who has ever done this. He has friends. FRIENDS! Some are on the spectrum, some aren’t. His playing isn’t typical. There is still a lot of parallel play, but occasionally I see him engage with kids and I melt. Other parents take this for granted. I don’t.

I have remarried and so has his father. We both were lucky to have married people who understand our lifestyles. I couldn't ask for a better father for Aiden. Likewise, I couldn’t ask for better step parents. We are very lucky. I’ve come to accept that Aiden may live with my new husband and me forever. At best, he will live within a very close proximity to us. Is that terrible? When Phoenix was younger I always pictured him spreading his wings and traveling the world. I would tell him he could always come home to Mommy. Is it so bad that Aiden will be near me for all intents and purposes? Maybe he will get married. Maybe not. Maybe he will have kids. Maybe not. These are questions all parents grapple with, not just those of us that are blessed to enter a world that is VIP only.

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