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Spring 2015 161

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.

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/
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  • dayrene

    Here’s the deal: Caregiving shouldn’t be like this. As a parent of a typical child you would have little trouble finding child care, provided you had a small amount of money to spend on it; you would be able to expect that your child, at 18 or a little older, would have a safe place to move to–college, or an apartment of his own. But as a parent of a disabled child, you don’t have that, and that’s not right.

    People seem to think that the worry that a disabled child won’t get to be somewhere safe when he grows up is inherent to disability. It’s not; it’s inherent to anti-disability prejudice. The world isn’t shaped in such a way that your son will fit into it easily; I know, because I’m autistic too and I’ve had to push pretty hard to find my own place–for me, that’s an apartment of my own and an aide that visits once a week. Not everyone is as lucky as me.

    But on the other hand, things are getting gradually better. People like me, people like you and your son, are pushing little by little to get the world to make us-shaped spaces where we can fit. Fifty years ago it was, “Institutionalize your child and forget about it.” Twenty years ago it was, “Well, maybe he can bag groceries.” Nowadays, I go to college (oh, did I mention? I’m studying human factors in college) and I see disabled students and staff routinely. Our grounds crew is intellectually disabled and they do a great job. Every so often a powered wheelchair will come down the sidewalk with a student riding it and bookbag slung across the back, maybe an aide in tow. College is becoming more accessible; so is work and community living.

    Think about it: If fifty years ago we lived in nightmarish institutions, then what will it be like fifty years from now? If twenty years ago we were marginalized and barely allowed to participate in our communities, what will it be like twenty years from now?

  • Stacey Babbitt

    I will keep my comme t short and sweet.I totally Get You im in the same situation as you..This was a great article..with every sentence I shook my head yes yes I soo get it..all my best to you..and ur son looks so familiar what school does he attend?

    • Kimberlee Rutan McCafferty

      All the best to you too!