This is going to be one of those posts that people either love, or hate. Fasten your seatbelts please, for what I’m confessing to you right now is big.
I love my eldest son, but I don’t want to live with him forever.
I’m imagining that right now people are actually shouting “Amen sister!” or calling me the most selfish mom in the world. Here’s the truth. When we sign on for this parenting gig, I doubt most of us believe we’ll be in for what I call “marathon momming,” where we’re responsible financially, physically and emotionally for the well-being of a child (or children) for the duration of their lives. I’m sure some people do contemplate that fate when they’re gestating, and there are even some who choose to adopt special needs children knowing up-front they will need an intense level of care until they die. I’ve met a few people in the latter camp, and they are some of the most amazing individuals I have ever met.
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I am simply not that amazing.
I love Justin, adore him actually. He was a much-wanted child, conceived after multiple miscarriages, and myriad rounds of IVF cycles. I was ecstatic when I carried him past that thirteen week mark, enraptured with him the first moment I laid eyes on him. To me he was a miracle baby, and remains my miracle son. He is (in my totally unbiased opinion,) frankly fabulous.
But the truth is I haven’t even hit fifty yet, and many days I find myself really, really tired from two rounds of autism parenting. I don’t see myself taking care of Justin when I’m eighty. In addition, I can’t imagine having him with us for forty-plus years, then transitioning him to a group home. And yes he has a sibling, but that sibling has autism too, and it’s just too early to project what Zach will be able to handle as an adult. If I’m being perfectly honest, in my “wishlist scenario” Justin’s little brother is his guardian and frequent visitor, not his 24/7 caretaker.
Of course, as my friends who are entering the “twenty-one plus” years will point out to me, due to fifteen year waiting lists and lack of options I may not have a choice for many years as to where he’ll live anyway.
My dream is for Justin to graduate high school and either reside on or in close proximity to a farm. I want him to have a job where he’s outside a few hours of the day, engaged in physical activity, making a contribution to the world. I wish for him to have frequent access to the horseback riding lessons he so loves. In my perfect world this farm is down the street from my future residence, giving me easy access to visit him daily if possible and to take him home for weekends and holidays. I’d do drop-ins at his home, bringing one of my two signature dishes (I know, it’s pathetic that at almost fifty I have only two) to his caretakers frequently, because food equates to happy employees.
Plus, it will give me the opportunity to spy.
Honestly, the situation in Jersey is not that great. At the moment there is a long waiting list for residential placement for autistic adults, a waiting list that does not commence until the child turns twenty-one. I’ve been told by people I trust that for various reasons I would not place Justin in many of these group homes anyway. When he turns twenty-one he’ll be eligible for a certain amount of hours of in-home respite care, but the amount of hours varies so differently from family to family I’m not certain what we’ll get.
The truth is at some point in my life I’m going to want to make my mammogram appointment and not have to worry about childcare. I’d like to visit Zach in college if he attends without having to worry about who will take care of his big brother for a weekend. Hell, I’d like to have a day where I just lounge in bed watching Sex and the City reruns while drinking martinis, and never get out of my pjs.
Sadly, that’s where my fantasies run to these days.
Yes, I want my freedom back. I am fiercely independent, was the girl who broke her mother’s heart at three when I waltzed out of the car for pre-school, gave my mom a quick wave and never looked back. I want to travel. I want to have a sick day (!)
I want to just breathe.
And I say this here and now. I respect every parent’s choice in this manner. I’ve written posts on this topic before where readers have labeled those who want to keep their kids until their death “martyrs.” I’ve read comments on other people’s blogs directed at parents who desire residential care for their children indicating they were basically Satan’s spawn, claiming they were abandoning their children. I don’t agree with either camp, particularly resent the commentary from people not even caring for autistic children who’ll require lifetime care.
It seems everybody has an opinion these days.
I just want Justin to be happy, safe, and productive. I want those things for myself too. I’ve got almost a decade left to go before we face this dilemma, and I hope things change for the better. I’m a girl who’s always liked having choices.
And I hope in 2024 they look a lot prettier than they do now.
For more on my family visit my blog at autismmommytherapist.wordpress.com/
Follow me on Facebook at Autism Mommy-Therapist
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