Grief, Children and Autism

Posted by: , March 28, 2011 in 12:53 pm

sad face 2This past week, my father-in-law died. He was a man who was well-loved, and who lived a good life. He was a World War II veteran, a school teacher, a writer, an artist, a father, a grandfather. Our kids adored him. This is the first time they’ve lost anyone close to them, and it’s tough.

We’re doing all the things we’re supposed to be doing to help them, but it’s one of those parenting moments that you’re completely unprepared for and is exquisitely and uniquely suckish. The kids are responding as kids do — or anyone, really. There is heightened anxiety, and then everything is fine, and then we’re laughing, and then someone’s behavior goes down the crapper.

How much of this is the grief and how much is that things are generally out of whack, I don’t know. My husband was gone for a few days last week to be with his father and his family; his absence threw the kids off, let alone the reason. There are times when they seem to be trying on different responses to the loss of their grandfather, looking for the one that fits them best.

And then there’s Little Dude. At first he did not seem to react at all to the news of his grandfather’s death. Except that maybe he was losing himself more often in spinning Lego minifigures in his fingers. And there are differences in his behavior: he’s more irritable, more frustrated, quicker to melt down.

There isn’t much out there about helping autistic children deal with death. The few articles I found online seem to have all ripped each other off and been cribbed from one small scholarly paper written in 2001 to help special ed teachers prepare autistic kids for a loved one’s death.

Every one of the available articles mentions how in one school, some special ed teachers helped an autistic boy with a terminally-ill father process the father’s inevitable death. The teachers bought a whole chicken at a butcher shop and brought it to school to show the little boy. They named the chicken “Charlie.” (Every article mentions this detail.) They explained that Charlie the Chicken was dead and then they buried it and put a cross on its tiny little chicken grave.

I am totally not doing that.

First of all, Little Dude’s grandfather has already died. This isn’t something we can prepare for, it’s something that’s already actually happened. Also, as sad as we are, there’s no way anyone in our family could conduct a roaster chicken funeral with a straight face. Plus, my kids once tied a leash onto a plastic play-kitchen chicken and named it Chicken Bob, so that adds to the weirdness.

Secondly, we eat delicious chicken in our house. It seems like naming a chicken something other than “Dinner” and burying perfectly good food outside in the yard is only going to confuse Little Dude more.

I would just like to point out that this is totally typical of the “WTF” non-advice advice that you get as the parent of an autistic child. While role-playing can help lots of kids prepare for life’s weirdness, I’m 100 percent sure that this chicken gig would put me over the edge of insanity. And that’s pretty much the extent of the advice out there.
In fact, if you Google “autistic children, grief,” what you get is a metric f-ton of articles about parents grieving over their child’s autism diagnosis, and almost nothing about helping an autistic child process grief.

I emailed my friend Amy about this lack of helpful information. Amy, who writes the hilarious blog Pregnant Chicken, also has a son with autism. Her response was:

Figures. The more I read about autism, the more I want to punch someone in the face. It will more than likely be the next person that tells me I have to watch Parenthood because “one couple has a little boy with autism” or that I need to watch Dr. Oz because he’s doing a show on autism. I know they are trying to help so I just nod but it’s like someone pulling along side me in a boat as I’m swimming across the ocean to tell me they make something called “water wings.”

And that is why I love her.

I tried different variations of my Google seach — searching for autism and loss (found articles about autistic kids who wander off), autism and bereavement (more on Charlie the Chicken), and autism and death (scary-ass stories about autistic children dying).
As is so often the case, we’re winging it, judging moment-by-moment what will work best for Little Dude. We are including him in all the conversations we’re having with his older sisters; talking about our favorite memories with their grandfather and looking at photos together. We’re talking about what it’s like to feel sad, and respecting that people express their sadness in different ways.

Mostly, Little Dude is craving time with his own daddy. With four kids, it’s always a challenge to make one-on-one time work, but we’re doing our best.

I’d love to know what has helped other children — particularly special needs children — through the loss of a loved one. Please leave your suggestions in the comments section below this post. No suggestion is too weird (not even burying chickens) or too small, because every child is different. You never know what might be useful to another family. Maybe the next time someone Googles “autistic children and grief,” they’ll land on this post, read your comments, and find something that helps.


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