The kids he hangs out with always naturally assume he understands them. Even though he doesn't say so, they think he wants to play, eat a second piece of cake, and go to the park, because it's what we taught them: Jack communicates in a different way. It's not a person "hidden behind the autism." It's who Jack is and how he interacts with the world. The more we treat people with that kind of respect, the more likely we are to consider them our equals who have the same rights to learn, grow and love.
Lesson 4: Advocate the Moment
We have a rule at our house that you may want to adopt in yours as well: "You can smile, say hello or mind your own business, but you don't just stare at someone." Standing up for what's right within my own family is easy. Doing so outside our intimate circle is more complex. Still, no matter how difficult it is or how awkward I feel, I speak up whenever someone unwittingly puts my family down. I explain that nothing is "wrong" with Jack and there's no need to feel "so sorry" for us. Or I set the record straight that nonverbal doesn't mean not intelligent. But I wasn't always so vocal.
Last year, a mom from school used the R-word (retarded) in a conversation with me and I silently let it go. But it gnawed at me for days. What if my children heard her say that? What if someone overheard that conversation and made an assumption about me based on her language? When she repeated the word a few weeks later, I took a deep breath and spoke up. I knew it might end the friendship with her child or make me seem overly politically correct; however, I couldn't let it slide. "I didn't mean it that way," she said. But when pressed, she agreed that there wasn't really an appropriate way to use the word, period.
The trick to advocating for my son was to learn to do it without being condescending or angry, because then I wouldn't be heard. Once I got better at it, I realized I made things easier for everyone in my family. The other day a stranger was staring at Jack. My daughter immediately said, "He's just autistic. You can say hi." For her, it wasn't difficult or awkward. Stepping up for her brother was effortless.
Lesson 5: Accept Your Limits
Several years ago, I found myself in a dark place. Every afternoon I was exhausted and frustrated, trying to care for Jack while I prepared dinner. He uses his hands to explore his environment, so Jack's sleuthing skills combined with any raw meat or onions out on the counter made creating even a simple meal problematic. Just being in the kitchen puts him in peril, whether or not I was cooking. Only two minutes on his own was once long enough for Jack to climb onto our electric stovetop and turn it on. (Thankfully, he wasn't directly over the burner.)
I had to get over a self-imposed roadblock: I, like many other mothers, set unrealistic expectations for myself. I believe I should be able to serve elaborate meals, do all the laundry, and still be a writer and editor while parenting. Now, maybe I can do all those things, but I also need to make sure my son is safe and cared for without my feeling stretched too thin.
Jack needed more help than I could provide, even with an awesome husband who parents actively. So we made it a financial priority to be able to have an aide come in each afternoon for a few hours. I don't ever want to be frustrated with my son because of the level of care he needs. All it took was one small change, and the flustered, tired old me was long gone. Sometimes I still feel that having that help is a luxury I don't deserve. At the same time, I know it's a gift to my family that I have more patience. And I know it's okay to acknowledge that I can't do it all.
I'll never learn all the things it takes to be a perfect mom, but thankfully I have enough grace to forgive myself for that. What I am doing is trying my best to be respectful of my son, encouraging him to develop new skills and providing him with opportunities.
I think many parents with special-needs kids simply don't imagine their children as adults. When you're sitting in a therapy room, a doctor's office or an Individualized Education Program meeting, it might seem as if childhood lasts forever. But it doesn't. My son is now closer to being a man than he is to being my baby, so I need to work fast in order to learn what I can to help him transition into adulthood.
I'll try to keep the beauty of the long road in mind when I think a shortcut might be tempting. I'll talk with autistic adults to gain their insights. And I'll hold Jack's hand while I can, because I truly believe there is a day ahead when those long, lanky arms just won't need me quite as much. With a little encouragement and the right opportunities, I can see my tween growing into a tall, confident, independent and happy young man.
Jennifer Byde Myers is an editor at The Thinking Person's Guide to Autism (thinkingautismguide.com) and blogs at Jennyalice.com.
Originally published in the April 2013 issue of Family Circle magazine.