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Friday 24 Oct 2014

Autism Awareness Contest Entry: Amy’s Story


Amy is the mother of a nine year old boy with autism. She and her family have had to make the difficult decision to put their little boy in a residential home. This is a difficult decision for any parent and one that is not taken lightly. Her wish for herself and for everyone in the world is to remember not to judge others because there’s no way another person can understand what the other person is going through. Our hearts go out to Amy, her son and the rest of her family at this time of need.

What I Want For the Future

May first has always been my favorite day of the year. To me it symbolizes slamming the door on snow, bitter wind, scraping car windows, and having to bundle up just to grab the newspaper. For my son Jonah, it means he’s starting to ask for “waterfall” – one of the few words he signs while speaking, tapping three fingers of one hand in a W against his chin. He means he wants to visit his favorite waterfalls about 40 minutes away. The loudly-shushing water white noise is an aural backdrop he loves. He feels free there. He’s gleeful and adventurous, alone, laughing and singing to the music of the water’s rush. And I have no doubt if we allowed him, he’d climb the falls, monkey-like, to the top without a stumble AND faster than most grown folk. He’s agile and elfin, confident and inherently fearless. He has autism and has just turned nine.

When I take him to the falls now it’ll be from a new perspective, because we’ll be placing him in a residential educational school some time this year. He’s violently aggressive so much of the time that his teachers, doctors, and eventually, we, have come to understand that he needs the 24-7 routine and consistency of a home with professionals skilled in the care and treatment of kids with severe behaviors. Believe me, if you had asked me five years ago if I’d consider placing Jonah in an institution of any kind, I’d have been almost insulted. In fact, in the back of my mind I had wondered just what kind of people dropped their child off to live somewhere else –simply because the kid had autism, it seemed to me.

I know the moral usually comes at the end, but the universe is obviously nudging me right in the middle of Jonah’s story with a message: don’t judge people. I can’t deny this truth and I can’t ignore its importance. When I was single and childless, I often rolled my eyes at parents in the grocery store with their screaming, boogery kids flailing on the floor. “Nice parenting skills,” I inwardly scoffed with the arrogance of youth. Flash forward ten years and I was the parent with the screaming, flailing kid. What goes around comes around.

You’d think I’d have learned it then, the lesson about judging people. But no. Once Jonah was diagnosed, there was plenty more to judge. You probably already know this but we really don’t have autism figured out, so there are all kinds of different theories and treatments – innumerable ways to absorb and understand the diagnosis, mourn the child you thought you had, celebrate the one you do have, and manage the symptoms. So it’s easy for one parent of a child with autism to judge another. There are so many manifestations of kids on the autism spectrum that it leaves lots of room for criticism. I think really it’s mostly fear. Am I doing this right? What’s the best thing to do? How are THEY doing it?

I mostly avoided discussion about treatments and theories, yet still I held myself separate from those families who placed their child. “What does it take for people to put their child in one of these places?” I’d think. “Who does such a thing?” Now I understand why. Now I know who.

When Jonah was born, I remember I wouldn’t let them take him away from my bed – not to the nursery, not anywhere. When they needed to weigh or monitor him, I walked along next to his rolling bin and stood over the nurses until they handed him back to me.

Now that we are placing Jonah in a residential educational school, I think perhaps there was a reason I clung to him like a burr when he was born. I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

And just like the day he was born, I don’t want to let go of my little baby boy.

So I’m definitely ditching the judgment. “Be kind, for everyone is fighting a hard battle.” There are arguments about who said it but I love that quote. What I want for the future is for me to remember it – for us all to remember it – for people to be kinder to one another – to realize that everyone has pain, problems, heartache and anguish, but we can make the world a better place, even if it’s just one person at a time.

Amy Wink Krebs
“Normal is a Dryer Setting”