Sad little child, boy, hugging his mother at home,

I Will Always Worry About What Will Happen to My Children When I'm Gone


Recently I posted a piece in my various venues talking about what I’d learned about autism in the almost 12 years since my son Justin’s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly), and although I usually don’t respond to criticism with a “rebuttal post,” this one has been ruminating for a while.

So here it comes people.

In the piece I wrote mostly about acceptance, of coming to grips with what autism means for my eldest son’s life trajectory. One of the things I wrote was the following: “You will learn you’ll always worry about what will happen to them after you die. You will learn to
live with it.”

I stand by those words. I have learned I will always hate the fact I can’t be with him, loving him, protecting him and caring for him his entire life.

But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his challenges so he would live an independent life. All of our therapeutic interventions has not changed the fact that he will most likely need constant care for his entire life. I’ve learned to shelve that fear so it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys. I’ve accepted his need for lifetime care.

There are always challenges in our daily life. His OCD can be daunting, and sometimes he still has aggressive outbursts. But the last few years have been so much better than his earlier ones that I’m often inspired to write about his progress. I’ve been told by
readers I’m naïve, to wait until puberty hits.

And maybe they’re right. I say this without “snark” — perhaps when puberty hits, my
sweet, smart, happy tween will become unidentifiable from the boy we’ve raised in the last few years. Maybe he will turn 21 and there will be no good group home placement for him, no quality “day care,” no money for home respite care.

Or, maybe not.

Maybe Justin will have options like my friends’ adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he’s been his whole life. A grown son of my friend goes to a daycare center he calls “college” and loves it, and lives peacefully at home. Another friend of mine with two adult children
with autism has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives.

And just for the record, the last two examples are of autistic adults living large in Jersey.

Perhaps some of you are thinking, “Sure, Kim, that’s great for them, but you won’t have those pretty choices in eight years.” And despite all the autism initiatives I read about daily, that might be my son’s fate. It’s too early to tell.

But even if I am harassing my husband in eight years I will never regret writing about or living these last few years. I will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, refusals to eat, daily aggression, and a host of other incredibly challenging issues that affected not just Justin but our entire family. I wish I could have known then how much easier life would get.

I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person.

I write for several reasons, and to be perfectly honest with you I write for myself as much as I write for my readers. Writing keeps me from consuming 2 pounds of chocolate daily.
Yup, I need my blog for my physical as well as my mental health.

But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. I know from comments that my missives have helped others, and I’m going to keep at it. I never want
to walk around hollowed out with the fear I felt in the early years.

My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you.

I will never give up pursuing safe, productive, and happy lives for them both.

I will never give up.

Photo via Thinkstock Images.

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Check out our Submit a Story page for more about our submission guidelines.

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