As I often mention in this space, I read a ton of parenting articles, especially online blogs written by special needs parents. I identify with the ups and downs due to our 11-year-old son Carson.
For the first time in the 12 years I’ve been writing this column, I admit to some difficulty finding a topic for today’s column. It’s mainly a result of my 12-year-old son Beckett not wanting me to write about him anymore. I knew this day would come, as he has reached the age of being difficult to be around often as he flexes his independence.
As I massage him a bit, as he doesn’t get to tell me what to do, and while I apologize for the cop out, I think this letter from Kimberlee Rutan McCafferty to her autistic son, courtesy of questia.com, is worthy of reprinting. It had an impact on me as Carson’s future, particularly whether he will ever be independent, is something we think about a lot. It’s been an especially raw subject of late as we work to set up a special needs trust for his adult life. My hope is it has an impact on you as well, whether you are a special needs parent or not.
I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste. None of them taste nearly as good as chocolate.
You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live … and where your brother, who is also autistic, fits into the picture too.
Let’s just say it’s complicated.
You see, my heart is torn, my sweet boy, because as much as you’ve matured and grown since those difficult days 12 years ago when you were diagnosed with autism at the tender age of 17 months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.
Your needs are complicated.
I have friends, friends whose sons and daughters are autistic adults, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about autistic adults and their particular work and living arrangements. For many of them their transition has been fabulous. And I know in my secret heart of hearts that if I’m honest, most of these pretty choices may not be for you.
You see, if I had my way, I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after. This dream is why your mother runs every day and limits her wine consumption (most of the time).
One might ask how I know this is right for us when you can’t tell me yourself.
I know this the way I knew something was seriously different about your development at 16 months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”
I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door. I also know our pediatrician was an a**hole, but that’s for another story.
I know this the way I know I have to build in extra time in the morning and at night just for us to hug.
I also know things will have to change.
Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.
Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.
Part of me wants you to have some sort of job.
Part of me just wants you to have a life of leisure.
Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.
Part of me wonders who will snuggle with you and read you your bedtime story if I’m not there. …
Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us, so really the only questions are when and where. …
All of me wonders, time after time, how I will manage to give you a fulfilling life for 40 years from beyond the grave. Those “how” questions are a pox upon me.
As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception: for you to be safe, happy, and loved.
And all of me knows it’s complicated.