A Decade of Autism

Evan's 1st birthday.

Evan’s 1st birthday.

Evan turns 10 this weekend. I clearly remember my 10th birthday. My parents made a big deal about “double digits.” Now that it’s Evan’s turn to enter the second decade of his life, his birthday is a really big deal.

He’s excited to have a party and get presents. We’re excited to see what’s in store for a child about whom we once wondered whether he would ever talk, potty train, or independently perform daily activities.

One of the many things we’ve learned over the last 10 years is that you really don’t know what is possible or what you’re capable of handling. I remember learning about a relative’s new autism diagnosis. At the time, I thought I would die if I ever had a kid with autism.

Obviously, I didn’t.

Evan’s diagnosis came before his second birthday, although it was something we suspected because our toddler was always aloof. So many sights and sounds bothered him, and he never seemed comfortable in his own skin. While his diagnosis wasn’t a surprise, what shocked us is the  progress he has shown in the last 10 years.

Parenting Evan when he was a baby reminded me of a child caring for a pet goldfish. We provided him with his basic needs, and he hardly seemed to notice us. Would he even care if someone else took on the role of caregiver? I know it is a terrible thing for a mother to say but it was our reality. It doesn’t mean we didn’t love him. Of course we did. We loved him, we played with him and we tried to engage him. But he had no interest in interacting with us, and we didn’t know why. Were we bad parents? Was it because his brother Noah was just 14 months old – still practically a baby himself- when Evan was born?

Evan’s diagnosis gave us the answer to these questions.

Less than a month later, Evan started a full-day preschool program. He left each morning on the bus, and I picked him up early each afternoon so he could come home and nap. He started physical therapy, occupational therapy and speech therapy. He also began something called the PLAY Project, which is a program designed to help young children improve their language, development, behavior, and social skills through play.

One of the ideas behind the PLAY Project is to enter a child’s world by following his lead. So, for example, Evan would bang blocks together and we would do the same thing. If he made a noise, we’d imitate it. For months, we unsuccessfully followed his lead and for months we were essentially ignored. We thought nothing would ever change. But, then, like a baby who suddenly learns to roll over, it happened. Evan was playing with a toy car and handed it me to play, too. Slowly our son was showing an awareness of those around him.

I remember so many “he’ll never do that” moments. The pediatrician asked Evan to cough. I thought: “He’ll never follow directions like that.” He did. They eye doctor gave us a copy of a chart to practice letters for our next visit. “He’ll never know his alphabet,” I thought. Six months later, Evan knew enough of the letters to use the chart that his vision could be reassessed.

After so many “he’ll never do that” thoughts, I now think: “I wonder when he’ll do that.” I wonder when (not if) he’ll be able to go, without an aide, into a general education class. I wonder when (not if) Evan will ride a two-wheel bike or when (not if) he will stop swearing or pitching fits every, single, time he get frustrated. I’m not completely convinced these things will happen, but our son is teaching us that there is always hope, especially when you mix in optimism and hard work.

Evan at 3.

Evan at 3.

A birthday is a great time to reflect. When Evan was younger, birthdays were always hard because we were looking for milestones that didn’t come. At age one, he had just learned to crawl. When Evan turned two, we were still waiting for his first word. He was three, and we wondered if our sweet child would ever tell us he loved us.

His earlier birthdays were also hard because we didn’t know what presents to get, who we should invite to parties or even what he wanted to do to celebrate his birthday. He had little interest in playing with toys or any real friends.

As Evan got older, and we knew more about his likes and dislikes – mostly lights and ceiling fans – we spent several birthdays walking up and down aisles of our local Home Depot.

He still likes lights and fans, and we visit Home Depot on his birthday for old time’s sake. But now he prefers his birthday dinner at a restaurant which is usually picked based on how much he likes the lighting. Because of Evan’s allergies, we always bring his food so his choices are not based on menu selections.

Evan tells us exactly who he wants to come to his parties, where the event should be and what presents he wants – usually something that lights up or glows in the dark. We still have a no-candle rule on his special day, but he sometimes tolerates candles on other peoples’ cakes.

His 6th birthday.

His 6th birthday.

As I reflect on the last decade, I think about the progress we see with each passing year. It’s still hard to spend too much time looking forward because of what might not be. Reflecting is much better because it reminds me of where we were in relation to where we thought we’d never be.

Happy birthday, Evan. Thanks for bringing so much love and laughter to our lives and the lives of those who are lucky enough to know you.

2 Comments

  1. Dorene finer

    O.K. Jen now you’ve done it! You have brought me to tears as I read this. I realize that not only do you reflect Evan’s first decade but here I an thinking about him as he becomes a “double digit” but I’m remembering all you’ve been and done for him. The the progress he’s made is because of you, jon, Noah and Jessica. You’ve all given him more than the sum of all the therapies experiences. You’ve given him much more than the unconditional Love that comes with being a family. Lucky Evan. Happy Birthday to my “Double Digit” grandson.

    Reply
  2. Elaine Feldman

    What a beautiful,well written reflection of Evan’s first ten years. Jennifer, with your writing you enable the community to learn and understand better the special children that happen to have autism.

    Reply

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