Wednesday, May 29, 2013

Guest post: The Worst Five Minutes of my Life

My beautiful friend Tracy(and yes my name is Tracy too so we started out on a good note!) wrote this post for me. Her words make me feel like there is real hope for an Autism enlighten world. This all happened about a week and a half ago, right after we saw too many Autistic children in the news for elopement and drowning.


OK, so they weren’t actually the worst five minutes of my life, but that’s just luck.

Something has come to my attention, and I can no longer stay silent. First of all, I am a parent of two wonderful girls, and no, neither of them is autistic. I do not live in the world that most followers of this blog live. I follow Mommy Buddy, because she is my friend, because I adore all of her children. I love to engage Emerson and see how he interacts with the world. I laughed out loud when I found him dancing in my shower, well, after I got the razor out of his hands. And that is the thing about autism that I am learning with Emerson. Where they go can, and will simultaneously make you smile, change your thinking, and terrify you.

After months of my promises to help, Tracy relented and joined us at a pool party. Our older girls were celebrating a classmate’s birthday and we all had a great time, end of story, boring guest post.

Except the happy ending was pure luck. Towards the end, after we moved from the pool to the clubhouse (with a locked gate between us and the pool), Tracy needed to change a diaper, Emerson was happily eating pizza. She asked me to watch him.

This was the “hand off.” If you don’t know what I mean, you probably aren’t a parent, and definitely not the parent of an autistic child. http://www.heartofsailing.org/Docs/Autism%20Safety%20Toolkit.pdf describes this as the moment that responsible adults change who is monitoring the autistic child. This is not someone asking society to take responsibility for her child, this is one parent to another, or in our case, one parent to a trusted friend who has offered to help “in any way.”

And now I am going to interrupt myself. According to http://nationalautismassociation.org/resources/autism-safety-facts/, In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger after wandering/elopement. I knew this when I took responsibility for Emerson (Tracy told me before she gave responsibility for him to me, so that I would understand my responsibility better). And while I knew wandering/elopement was a potential issue for Emi, I later learned that Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings (taken from the same web site).

And back to my story. I started strong. I was in it to win it, this was my chance, I was gonna prove that I am helpful and trustworthy. I stared at him. He didn’t seem to be aware of it. I stared at him some more. I knew he could slip away at any moment and I was ready. Then his sister got up to get a piece of pizza, and I helped her out. He was still there. I resumed staring. Then the woman next to me asked me a question and I answered her. When I looked up later one minute, two minutes, three?, Emi was walking into the building with his mother.

 It isn’t so much that he got away from me but that I didn’t even KNOW he got away from me till he was back.

Have I mentioned there was a pool on property? Have I mentioned that 91% of U.S. deaths reported in children with ASD 14 and under were due to accidental drowning?

His mother found him standing at the gate to get into the pool area. And I can guarantee one of my nice neighbors would have let him in. He was dressed for a swim and there was obviously a kids party, which would have made strangers comfortable letting a child into the pool area.

I inherently understand that to call that the worst five minutes of my life is melodramatic, but my brain can create so many other scenarios where the cards did not line up right for us. The “what ifs” that play through my head are dark, and scary, and leave me unable to look a friend in the eye because I have let her down in a way that NO parent should EVER let another parent down.

And yet, she is still speaking to me.

Because he has gotten away from her too. Because she knows how hard it is to keep track of an autistic child.

And anyone who thinks you can monitor the safety of another human being 24/7, regardless of effort, is fooling his or herself. Or just plain mean (I have not ruled out crazy), and completely ignorant. All any parent can do is her best. And with Autism there is a steep learning curve. And we give thanks when we get to call it a learning experience and move on to another day.

I know my friend has been under attack for her views on this matter, and I could not stay silent. I have five minutes of experience in being the sole protector of an autistic child, her autistic child, and I just thank God he survived me.

And our hearts are filled with compassion for those who are not so lucky.

For additional support/resources. Try http://awaare.org/ for help in creating a wandering emergency plan, brochures to share with neighbors, and preview questions that could help first responders in the event of an emergency. And remember: “Search Water First!”

Now, if someone could help me down from my soapbox, it is pretty high up here . . .