(Dear readers, I apologize for my prolonged absence. It’s been stomach virus, flu, and root canal here (oh my!) but I’m back in the saddle now.)
Dear Justin,
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.
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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 (according to your father it’s not a permanent stint in Jersey), and where your brother Zach, 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 twelve years ago when you were diagnosed with autism at the tender age of seventeen 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 with severely autistic adult children, 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 adult autistic children 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 are not for you.
You see, I believe if you had your way you’d stay with us and 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 when you can’t tell me yourself that your preference would be to live with us, well, forever, but I know.
I just know.
I know this the way I knew at six months you shouldn’t have had such a penchant for spinning things.
I know this the way I knew something was seriously different about your development at sixteen 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 asshole, but that’s for another story.
I know the more adventurous trappings of an adult life would not be to your liking the way I know I have to build in extra time in the morning and at night just for us to hug.
I know if you could talk you’d tell me you’d like to stay with us forever so no matter how big you get you can still sit on my lap at night, listening as I read your Eric Carle story for you, fulfilling your penchant for cuddling and that particular fiction you’ve loved since infancy.
I know that if you had your choice everything would remain the same, with even that interloper of a little brother remaining in our home with you forever.
I know if it was possible you’d keep your routine of home and school and one-hour-outing for the next seventy years.
I also know that 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, to contribute to society.
Part of me just wants you to have a life of leisure because I know you won’t give a damn about having a job.
Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.
Part of me desperately wants my freedom back.
Part of me wonders who will snuggle with you and read you your bedtime story at fifty.
Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.
Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us (and not with your little brother as he has already told me), so really the only questions are when, and where.
Part of me just wants to know the future.
Part of me really doesn’t.
All of me wonders, time after time, how I will manage to give you a fulfilling life for forty 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.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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