By Angelena Alston
“He not singing Mommy,” my three-year-old daughter half-spoke, half-shouted in the crowded middle school auditorium. A few heads swiveled towards us and knowing smirks broke out on the faces of people nearby. Like any good mom would, I hurriedly sshhed her. She went about her business and continued digging in my purse for a handful of multicolored goldfish. The stage was a sea of white tops and black pants. My son was on the far left, almost at the end of his row. And, as usual, my three-year-old was right. Her brother was barely mouthing the words to a popular Christmas song.
My ten-year-old son has a nice singing voice. For the concert that night he had been excited to the point of nervousness. He’d spent days telling me the songs they were going to sing over and over again. Yet, there he was with a faraway look in eyes, his lips barely moving. It’s not that I was surprised, each year he’d stand there looking constipated and barely mouth the words. Admittedly, some years were better than others.
I leaned back in my chair and tried unsuccessfully to grab my purse back from my daughter as she continued to stuff her mouth with pilfered goldfish. It wasn’t always like this. When my son was three and in pre-school he had been so smart, so full of energy and personality. When his class had a nursery rhyme hit parade, he stood in front of a large group of parents singing with the rest of his classmates. He had to go to the bathroom and was holding onto his private parts for dear life during the whole performance. He never stopped singing.
That was Before.
Long Before changing schools, special classes, countless tears from both of us, doctors visits, two trips to the hospital, medication three times a day. Before our lives changed with the official diagnosis of Asperger’s Syndrome, and ADHD.
Even back then, at three, my son had signs of the illness: he was always lining things up, he had an intense sensitivity to noise, and he was unable to adapt to or accept changes. His diagnosis became official when he was seven, a second grader. He was the same age then as my middle daughter is now.
After he was diagnosed everything changed. He started going to a different school, he started therapy, and eventually medication for the ADHD. As he got older his symptoms became more obvious; he couldn’t get along with kids his own age, he couldn’t make friends, he couldn’t deal with everyday frustrations, and his motor skills were delayed.
Autism is so complicated because it’s not about the behavior so much as how the way the brain works; the way we form our thoughts and from there our emotions. It’s about how we make sense of the world. Without a basic understanding of how things work in a real world sense, making decisions, and dealing with other people is a constant struggle.
And the saddest part is that beneath all of that my son is so breathtakingly innocent and considerate and sweet. Anytime he goes to the store and buys something for himself, he makes sure to get something for me and his sisters. He shines, like a piece of glass half buried in the sand. It’s easy to forget the softness that exists as he harasses his seven-year-old sister, as he screams and cries because he can’t find a pencil that was “right there!” as he accuses me of stealing from him when he misbehaves and I take away one of his electronic toys.
All of this is in such sharp contrast to my youngest daughter. Whereas he is easily distracted, easily frustrated, she can be focused as a laser, able to figure out many things on her own. Sometimes I look at her and wonder if only. If only her brother didn’t have This Thing. This Horrible Thing that stands in his way, keeps him from one of the best things in this life, finding real connections with others, making friends.
I hate Autism.
There. I said it. I hate that my son’s own mind works against him, that he gets so stuck moving forward, that growing up is not only hard for him, it’s painful as hell.
Sitting at the concert, watching my son try his best to be “normal” my heart went out to him. I tried to wave and smile encouragement but we were sitting too far back for him to see me. In the end, he sang a little bit, but mostly he stood there looking stiff and uncomfortable. I felt sad for him. And then it was over, my son’s next to last concert as an elementary school student. It was a painful reminder that whether he’s ready or not, a new phase in his life is about to begin. Whether I’m ready or not, too.
As all of the fifth graders filed out the auditorium, I left the girls with their dad and headed for the cafeteria to pick up my son. I caught up with him in the hallway and we headed to the cafeteria to get his coat. As I walked close to my son, he said in a quiet voice, “How was I?” He didn’t yell it so loud that everyone nearby looked in his direction, he didn’t say it in a high-pitched voice so that he sounded much younger than his ten years.
I started to teasingly say, “Great.” Dramatic pause. “But next time you should actually sing.”
Instead, I found myself not saying a word because I had the sense something important was happening. In all the years, he had never once asked how well he had performed. If I really thought about the reason why, it’s probably because I always jump in without hesitation; I tell him how great he did, truth notwithstanding. For the first time, that night, I hesitated. For once, his mother, his faithful cheerleader, was silent; no gushing compliments, no clever quips. As I walked beside him, I suddenly realized what a toll all of this is taking on me.
I try my best to be encouraging and hopeful, to let him know he will always have me. But over the past year or so as his behavior has become less manageable and everything at home has fallen bit by bit into chaos, I have stopped trying so hard. I can’t do it anymore. It is exhausting to constantly micromanage someone else’s emotions, to have to anticipate someone else’s meltdowns. It takes so much energy to get from one day to the next. As his softly spoken question hung in the air for a beat, things seemed simple again; he was just a kid who loves his mom and wants her to think that he is good.
“You were great,” I told him smiling.
And as much as I hate autism, I love him with everything that is in me. As hard as it is, the more I can separate the disease from the essence of who my son is, the better off we’ll both be. It’s not easy to watch my son get hurt over and over, to watch him struggle. But in that moment I realized the hardest thing of all: it’s his fight, not mine. All I can offer is my love and support and hope and pray that when all is said and done that will be enough to help him get through the difficult days ahead.
I reached over and gave him a quick hug and a squeeze. He smiled, his whole face lighting up with something that I can only call pride. That’s better, I thought, feeling some of my strength come back to me. That’s much better.
Angelena Alston is a freelance writer from New York. She is a mother of three children with strong personalities. In between working as a nurse and writing she spends her time acting as a referee/confidante/chauffeur to her boisterous brood.
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