When I was a little girl, my parents took me to visit an old governor’s mansion at Christmastime. In the parlor area, there was the tallest fresh evergreen tree I had ever seen. Astonishingly beautiful, it was decorated simply with white Christmas lights and acorns tied with bright red ribbons. Our tour guide explained that the practice sprung from the German saying “from little acorns, come mighty oaks”.  A symbol of luck as well as rebirth, the humble acorn is a reminder that with nurturing and care, great things can happen. Well, I remember thinking, that’s certainly something to think about.

A couple of weeks ago, I had something else to think about. Sometimes people say monumentally stupid things with the best of intentions. My neighbors Ron and Lisa who have been parenting their son Dylon, a child with autism, for the past twenty years have heard more than their share of them. This one cut a little close to the bone.

“You’re so lucky. You’ll always have Dylon,” hapless co-worker said. “You know, you’ll never really have an empty nest.”

Wow. Open mouth. Insert foot.

As Lisa said: “Because all the things Dylon’ll miss out on, because all the experiences you want for your kids that will never be his, because all the things that autism has taken from him and us are small prices to pay for a full nest for all eternity. Because it’s all about us, right?”

Anyone who has parented more than a nanosecond knows that it’s never about what we want. That’s exponentially more crystal clear when you add a pervasive developmental disorder to the mix. From the very beginning of their autism journey with Dylon, Lisa realized the truth that how we travel is just as important as where we are asked to go. So she doggedly refused to let autism dictate the tone and tenor of her everyday family life. As Lisa says, “If I had let autism call all the shots, I would be dealing with crap every day, literally and figuratively.”

Yes, they had to make certain concessions to autism along the way. Grocery store shopping, for instance, was off-limits. Similarly, keeping Dylon safe was a constant challenge. When he was younger, their house had to be securely locked. All the doors. All the windows. All the time. When all three kids finally went to school for just three hours, Lisa hung out in the frame of her front door for at least half an hour, just going in and out, in and out, in and out without having to lock it immediately. Freedom never felt so good.

But she would never surrender her family life completely to autism. A lot of their early energy went to helping Dylon adapt to their family life and not the other way around. Lisa imagined as normal a childhood for all of her kids as she could and that meant sports and music lessons and birthday parties and family traditions and carpools .  With nurturing and care, some killer IEP goals, and some luck, she was going to get some mighty oaks, autism be damned.

This is why hapless co-worker’s comment hit such a nerve. When Dylon was little, there were big worries. Would he ever talk? Would he hurt his little sister? Would he hurt himself? Now, as he enters his young adulthood, there are even bigger ones. Will he be taken advantage of? Will he have a job? Will he be cared for after Ron and Lisa are gone? Where is the luck in all this worry? The excitement of any changes on the horizon are always tempered by fears of what’s to come and a sense of loss too.

And really good things are on the horizon. Dylon does have a job. He is checking off a box that was never a given. He works for the county’s Department of Education helping with all things paper: printing, mail sorting, publications, and more. They have never had a student worker, let alone a disabled one, but it’s all working out surprisingly well and even after the school year ends, Dylon is slated to work there all summer. This feels like more than luck, this feels like the winds of good fortune and it’s about time.

In the end, for Lisa, she feels that autism has taken less than it’s given, but it hasn’t been an easy road to this place. Her family has grown in ways that are hard to measure to fit autism into their life. Sometimes it was painful and still is. Though she would be loathe to admit it to the hapless co-worker, in many ways, Lisa does feel like the lucky one. But not for the reasons he thinks.

“I am who I am because I am fighting autism,” she says. With nurturing and care, great things can happen for all kids, even Dylon and other kids like him. Autism has taught her that. It may not be tied with a red bow, but it is an astonishingly beautiful thing.

And that’s certainly something to think about.

-Erin

Especially this month. April is Autism Awareness Month. The prevalence of autism has risen to 1 in 110 births, 1 in 70 for boys. Many of us have an autism story to share. This is Lisa’s.

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