Sunday, December 13, 2009

Caring for a Child with Autism Requires Vigilance, Constant Vigilance

The tragic death in Nova Scotia last week of young James Delorey touched people across Canada, particularly parents of autistic children. Autistic children and adults going missing is not an uncommon story. Sometimes things turn out well. But not always as we all saw this past week.

The sad events in Nova Scotia reminded me of how I felt when my son Conor went missing six years ago at age seven. Fortunately, and because of the actions of a person I do not know, things ended well with Conor's safe return. Now, more than six years afterwards, I remember those feelings as intensely as when they first occurred and as I recalled them three years ago in Vigilance, Constant Vigilance:

Saturday, September 09, 2006

Vigilance, Constant Vigilance

A recent tragedy in Toronto has revived some terrifying memories for me. A 12 year old autistic boy fell to his death from the 16th floor of a Toronto high rise in early May while under the supervision of a caregiver who resided at that location and who has now been charged with criminal negligence causing death. The case has prompted calls from the Autism Society Canada for national standards for caregivers working with autistic persons.

I know from personal experience the challenges of caring for autistic children and the need for constant vigilance. Three years ago I was home alone on a Saturday with my then seven year old profoundly autistic son when I took a business call on my phone. I had gotten into the habit of taking such calls while listening for my son's whereabouts. This time I got too involved in the call.

When I hung up I could not find my son. I ran frantically around the house and the yard before calling 911. I was informed that he was safe at the nearby Ultramar. He had attempted to cross a busy neighborhood street oblivious to the dangers posed by traffic. A good Samaritan had stopped and helped him into the Ultramar from where I picked him up. The man was still there, waiting to ensure my son was safe, when I arrived but at that point he turned and left without waiting for recognition, reward, or expressions of gratitude.

In my entire life I had never felt such fear, guilt, relief and gratitude. The impact of these intense feelings in one short span of time was difficult to absorb. I can literally still feel them now as I type, three years later. The lessons learned will never be forgotten.

As a lawyer I would not prejudge the caregiver in the Toronto case - or the outcome of that case. As a parent who has "been there" I know that it is all too easy, unless we want our autistic children to live imprisoned in "safe" environments, for the unthinkable to occur. There is no training that can absolutely guarantee our children's safety. But, to improve the odds and reduce the incidents of tragedy, there should be minimum national training standards for those who provide care for autistic persons - parents included.

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farmwifetwo said...

You cannot be with a child 24/7... Period. To claim otherwise would set parents and caregivers up to being prosecuted for being human. I have one child with severe claustrophobia and one who runs. How do I protect one more than the other... I can't... I pick a place down the middle and hope for the best.

Do you know whatever happened in the end??? I know I've never been handed extra "rules" when applying for funding and my friend is still a respite worker so I don't think any "rules" were made up.

But the case itself??

James Bender said...

I can agree with you totally on this. I too have a son with Autism and it is the most frighteneing thing imaginable when he cannot be located. Gerally, he's hiding in the house...but there have been two occassions where he has made it out the door, and man I am telling you, it is the worst feeling that one can imagine.
Peace to you and your child.
Jim Bender

Normalyn Espejo said...

The same situation happened here in our place. My son's classmate who is also with special needs went missing two weeks ago and has not been found till now. He went out of their house, rode a jeepney to town and never been found eversince. Up to now, I am still hoping for the best for him and his family.