My 12-year-old son, Carter, likes to discuss his future with me. “Mommy, where do you think I’ll go to college? I want to be a volcanologist.”
“Mommy, what kind of car will I get when I’m 16?”
“Mommy, when I get a wife, do I have to have a baby right away or is it OK to wait for awhile?”
“Mommy, should I get a job when I’m 16 or should I wait until after high school?”
With neurotypical siblings ages 21, 19, and 17, Carter is very aware of the patterns among people who are making the transition to adulthood. I’ve always been grateful that my youngest son, with his many brain-based disabilities (severe mental illness and borderline intellectual functioning, among other things), is so much younger than his brothers and sister because the age gap cuts down on the available comparisons. I’m grateful, too, that Carter goes to a school that exclusively serves kids with special needs, where all the students have wide ranging challenges and abilities, and where the school culture reinforces the message my husband and I constantly try to communicate to Carter: as long as he works hard and asks for help when he needs it, he’s aces in our book. We celebrate his effort as much as his successes, and it’s not hard to do because Carter works hard.
Carter’s expectations for his future, though, are more and more an issue. In the late 2000s, when Carter was gathering diagnoses like a snowball rolling downhill and his social, intellectual, and emotional challenges were becoming evermore obvious and disruptive, my husband and I grieved the future we’d thought he would have. We wrestled with our own expectations on some very dark nights when we feared he might not even survive, much less achieve a happy adulthood.
Eventually, when our fear and sadness became more manageable as we adjusted to our new reality and to the accommodations our son required, we learned to hold the future loosely, preparing for him to need us to actively parent him forever, or not. We bought a house that has a large bedroom appropriate for a young man in case he needs to live with us beyond the typical age at which young adults leave home. I’ve researched the process of gaining guardianship of him when he’s 18 if he needs us in that way, and studied the available housing and employment options for adults with the kinds of disabilities he has. I will soon begin to teach him to use the city bus system so he can have some independence even if he is unable to safely drive a car.
Even as we’re doing all that, we’ve learned to hold our expectations lightly and leave plenty of room for Carter to surprise us. Just because we have reams of paper detailing Carter’s many challenges doesn’t mean he won’t do many of the things that seem unlikely or even impossible now. While I really doubt he’ll be ready to drive at 16, maybe he’ll be ready at 20, or 25. Maybe he’ll find something he’s really good at and get a job that earns a living wage and live in a place of his own, where he pays the bills, does the shopping, and tends the yard. Maybe he’ll get a great job but need to live with us, or be able to live independently but not hold a job. Anything may happen, and we’re prepared to support him at any level of need.
While my husband and I can bear the tension of holding no expectations and instead preparing for multiple possibilities, Carter cannot. His thinking is concrete. The road to adulthood is fixed in his mind, marked by the milestones of driving, college, a job, and marriage.
When Carter asks me his questions about where he might go to college or what kind of car he’ll get, I could encourage his confidence in this potential future, but that doesn’t feel right. It’s too unlikely, and too easy for me to imagine an 18-year-old Carter screaming at me for allowing him to believe in something that is probably impossible.
I could tell him those things aren’t possible for him, breaking his heart myself instead of waiting for the world to do it, but children his age are meant to dream. They’re supposed to imagine potential futures in which they do exciting things. I love to see his joy when he describes what he has learned in science class, love the way he lights up when he says, “Mommy, I’m going to be a scientist just like Grandpa when I grow up!”
I’m not willing so far to be the person who tells Carter that a PhD in physics is a possibility that’s too remote to consider, but I feel the weight of the probable disappointment his aspirations hold. I never want to squash his dreams, but I would be irresponsible and unkind if I didn’t gently steer him toward an understanding of some of his limitations.
For all my fears for his future, I’m quite confident that Carter can have a fulfilling and interesting adult life. The fact that it’s unlikely to be what we typically view as a successful life is of no concern to Carter’s dad or me. Wherever he lives, whatever educational level he attains, and however his work and relational life unfolds, we’ll be happy if he’s content and thriving.
If only I knew a way to help Carter understand all of that without breaking his heart.
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.