A Sneak Peek… When Autism Comes to Roost : A Family’s Journey From Denial to Acceptance
It was a typical middle class family with two professional parents and four kids when the parents began receiving notes from nursery school about their third child, Max. This set the family on an unexpected journey together as they struggled to accept and accommodate. An illuminating read for any family faced with an emerging physical or mental disability in a child.
Ever since Max was diagnosed with Autism, the reactions we’ve received have ranged from the expected to the surprising. Most family and friends have responded with love and support, seeking to understand what is happening with our little boy. A few have expressed surprise at the diagnosis, telling us, “But Max is just like any other normal kid. It’s hard to believe that he has Autism at all!” I understand this reaction, and in fact I am pretty sure I’ve said something similar in a well-meaning way to other parents of other children in the past. I also recognize that it is because Max is so high-functioning that he can come across to people as just like “any other normal kid”, and for that I am grateful.
What I don’t understand is the intentions of the few people who have pushed it further, not wanting to let it go when I nod and say, “Yeah, it is hard to believe. But he does have Autism.” These people (who have typically been acquaintances or even strangers) seem eager to pursue the issue, actually arguing with me or my husband that Max couldn’t possibly have Autism, because he does this or does that and Autistic kids can’t possibly do this or that. To put it mildly, this is the least helpful of any reaction and is the one that I find the most exhausting.
Unlike Joel, who is able to nod and walk away, conversation over, I end up wasting time explaining at length why Max has the diagnosis he was given. Typically, I become involved in a peculiar, topsy-turvy debate, with me arguing for my son’s psychological difficulties. Is it so hard to believe that a sweet-natured, intelligent, curious child may also struggle with his behaviour and emotions? Are we really all so black-and-white? Having someone question the diagnosis in such a strident way makes me feel incredibly isolated as a parent, as if Max and I will get sucked into our own little vortex the next time a “non-normal” behaviour occurs.
In contrast, perhaps the most helpful reaction to Max’s diagnosis occurred just last week, and came from a stranger. It was a typical Thursday morning, and so I did what I normally do on such mornings: I took Max and Sam to the local library. Because I find the main library too overwhelming with a highly energetic Sammy in tow, we headed to the small branch. This branch is located in a nearby strip mall and has a lovely, small children’s section, Sammy-sized. The visit to the library went wonderfully, even better than normal. There were no other children in the room, which made Max happy. He quickly found the toy truck he loves and played contently with it for half an hour. He then helped me pick out books we planned to read once we got home, while Sam moved chairs around the room and then sat on each one in turn like a little king.
The library visit over, I walked outside with a bag filled with books in one hand, Sammy’s little paw in the other. Max was skipping beside me, singing a made-up song.
“Anybody can be anything,” he sang in a sweet, off-key voice. “You can be a tree or a library or even a car, too…” The song continued, with every object he saw added to it. I walked towards where the minivan was parked and let go of Sam’s hand, telling him to hold onto my leg instead, and then reached into my pocket for my keys. Suddenly, inexplicably, Max bolted into the parking lot, almost getting hit by a car. His happy song had been replaced by hysterical laughter, reminiscent of zoo monkeys in heat.
I dropped the keys on the ground and quickly picked up Sam, then rushed us both into the parking lot. I somehow managed to catch Max by the sleeve of his jacket. He began to swing at me, screaming. He twisted out of my grip and darted once more. I shifted Sam onto my hip and managed to grab Max’s sleeve again, as a car honked at us and the driver gave me the finger. I dragged a shrieking, punching Max onto the curb and tried to catch my breath.
“Back off, man! Just back off!” Max screamed, writhing in my hold.
“No, Maxwell! No!” I realized I was shouting at my child, but at this point I really didn’t care.
I shifted Sammy on my hip again, while holding onto Max’s sleeve. I looked at my keys, still lying on the ground by the minivan. Just a few feet away, their close proximity teased me, taunting me as a mother. Just try and get us, they seemed to smirk in their shiny, asshole way. Go ahead and try it.
I turned back to Max. “Please, Maxie! We’ll read the books once we get home and you can even have a juice box!”
Max twisted his face towards my hand and gave it a bite. I flinched but forced myself to keep holding onto my son.
At this point, a confused little Sammy began to cry. “No, Maxie, no! Maxie bad. Maxie naw-tee!”
Again more screaming and punching. “No! No! Back off, man! Back off!”
About twenty feet away, a neatly dressed woman in her early seventies got into her car and turned on the ignition. After a few moments it became obvious that she wasn’t going to drive away. Instead, she turned off her car and got out again, walking towards my little triumvirate of wills.
Just as Max gave me another bite, the woman began to speak. “Let me help. Which one should I hold?”
I pushed Sam at her, not caring if she was the distant cousin of Mussolini or Jack the Ripper. He instantly stopped crying and reached out to touch the woman’s face, giving her his dimpled grin.
“I’m Sammy. Sammy David.”
With both arms now free, I picked up a shrieking Max and held him firmly in my arms. He tried to slap at my face, but I jerked my head away. While still holding him, I bent down towards those damn keys (gotcha!) and opened up the minivan. I tried to force Max into his car seat without actually causing him bodily harm, but he was having none of it. He made his arms and legs like pieces of steel, rigid and unbendable. As I felt his strength build against me, I noticed my own start to dribble away. I can’t do this!
“He has Autism,” I called out to the woman. I knew there were tears in my voice, but I didn’t care. I wanted this stranger to know, no, I needed this stranger to know that the scene she was witnessing wasn’t totally a reflection of my ineptitude as a mother.
“It must be hard,” she called back.
When I heard those words, those four simple, yet so validating words, I was suddenly able to push my child’s flailing limbs into position and snap, snap, buckle up his seat belt. I then turned back to the curb to go get Sam from the woman and to thank her for her help.
Before I could say anything, she smiled at me and nodded towards my toddler. “Your Sam has beautiful long eyelashes, just like his mommy.” She then smiled again and walked back to her car and drove off. And that was that.
For me, that entire morning, from when we first left our car to go into the library until we finally drove off again is what I wish anyone who meets Max (or meets any child with special needs for that matter) could experience. To me, that morning represents it all: Yes, Max can be such a joy, and yes, it can be difficult to believe that he has Autism, and yes, the hard times can be so damn hard, and yes, sometimes an offer of help or of understanding or of just getting it makes all the difference in the world. Yes, yes, yes, and yes.
Alicia Hendley is the mother of four children, including a son with autism. She has a Ph.D. in clinical psychology and worked for years as a psychologist. She is the author of two novels (A Subtle Thing and Type). Her poetry and nonfiction have been published in Room Magazine and Hippocampus Magazine. She was long-listed for the Vanderbilt-Exile Short Fiction Award in both 2010 and 2011. She was short-listed for the 2014 CBC Canada Writes Stories of Belonging competition.
Dr. Hendley is an advocate within the autism community and blogs regularly for an Ontario autism website. Her post (“Mommy, do I have autism?”) was also published in the winter 2014 issue of Autism Matters magazine. Dr. Hendley is a frequent speaker about her experiences on autism and parenting.
This article was featured in Issue 40 – Conquering Stress