My son's future may look different from others, but I know he is happy
By Kimberlee Rutan McCafferty | October 5, 2018
This is a guest blog post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. She is the author of Raising Autism: Surviving the Early Years available on Amazon
It was a simple question, asked at a party of people I hadn’t seen in years. “What grade is Justin in now?” was the query, but the truth is I had to stop and think about it because they don’t really do grades at his private autism school. “He’s in ninth” I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigiot, and my thoughts.
Ninth grade. High school.
My boy is in high school.
One would think that realization would have occurred to me in August, not September after he’d already been back in school several weeks, but honestly the end of August/beginning of September is such a blur I’d only been able to retain one kid’s grade (5th, so proud of myself), and hadn’t really given much thought to such a momentous leap on my eldest’s part. As I savored my poultry and looked around the room the enormity of his age, his maturity (and mine) hit me.
If he wasn’t severely autistic, in three years he’d be going to college like all the children of everyone else in this room who had their progeny at a decent age.
I won’t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin I haven’t yet been a high school or college mom, so I’ve only watched vicariously as my nieces and nephews and friends’ kids have gone off to the big time. I’ve hugged the parents of those children, reassured them that they are fully “cooked” and will do fine. I’ve consoled them when empty nest syndrome ruled the day. I’ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they’ve been given the tools to move on to their (more or less) independent lives.
An independent life. That was the brass ring for me for Justin’s hoped-for progress when he was diagnosed at seventeen months a decade-and-a-half ago, and it’s been the hardest thing for me to relinquish in my dreams for him.
Don’t get me wrong. Sometimes I’m sad that he’ll never go to the prom, attend college, have a career, or get his license (okay, maybe not so much that one) too. I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say “phooey.” These events are precursors to finding love, learning skills, and the holy grail, independence.
It’s okay to be sad sometimes.
But the truth is my sadness is tempered by the fact he will never know what these things are, and won’t miss what he doesn’t know. My boy revels in routine, in having his mom greet him when he gets off the bus, in making him his expensive pretzels, and singing him the same three songs he’s listened to since babyhood. He’s happy, gloriously so.
And trust me, having a severely autistic teenager in the house who’s predominantly happy is the holy grail too.
I’ve learned to shelve my fears over his future both so I can function, and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don’t want to miss a moment. He is joyous, and safe. He loves his life.
And for that, I am eternally grateful.
Being a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don’t know if we’ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what’s best for me- I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I’m not sure what’s best for us.
More importantly, I’m not sure what’s best for him.
I’m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you’ve been carrying about for seven seasons. I don’t yet know what I’ll decide.
But I do know this.
My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely.
Will I revel in the fact that he can leave? Absolutely too.
Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too.
Our decisions are not clear cut. Our feelings don’t have to be black and white.
I’m pretty sure for a good long time I’ll be dwelling in shades of gray.