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 . . . 



13 comments:

  1. I love your post!!!! I have an 11yr old NON-VERBAL Classic Autistic son, who loves to wander.... and LOVES to play in the water!!. For many years I would have never thought to ask ANYONE, other than grandma, to "watch him for a second"... not because I thought I was BEST, but because I didn't want anyone else to go through the mini-heart attack when you realize "they're not there". I STRONGLY suggest, implore and beg, that EVERY parent of an autistic child, and even non-Autistic children should enroll in swimming lessons. I started BOTH my children swimming at around 6 months!!!!

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    1. Grandma and Aunt Rissa are the only sitters for us too!

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  2. THANK YOU! It is hard for parents of the neuro typical children in our communities to understand the issue of elopement. The standard put them on a leash doesn't necessarily work either! My 9 year old not only doesn't fit the buddy packs anymore but he can undo the straps. And did I mention he is 9? Let us just cause him more social discomfort shall we?

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  3. Great post and I agree, I am so sick of people immediately jumping to blaming parents for elopement. People have no idea how hard it is.

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    1. Well my beautiful friend is one less person in the pool of ignorance. I hope her words help so many other people <3

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  4. You people are in such denial about your children. They can be taught to not wander, mine has. Don't give me some crap about Tracy being attacked, very over exaggerated comment. She just didn't like being called out on her "feel sorry for me" story. My 10 y.o. w/Autism was non functioning at 5 and is now mainstreamed with no special anything at school. We have all worked hard to get him where he is now. He is the one who doesn't want to even associate himself with Autism or be called Autistic. He is enjoying discovering the things that were closed off to him but are now available to him. Get off the feel sorry for me train and get on the save your kid train. I work every day with him for his future and mine. Maybe less time writing crap like this and working with your kids would benefit them more than you venting on FB.

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    1. "You people" This coming from the person who is hiding behind a Anonymous moniker. Too Coward to come out and say this. I think we all know who you are.If you are going to attack someone's post that you have be stalking, because let's face it, you left her Facebook page, and so you have nothing better to do than stalk Mommy Buddy's page and make more ignorant statements. Here is your shovel, Miss.As you are digging yourself an even bigger whole. This isn't doing much for your child's image as an author. I will call you out on your bs. If this is your hobby, stalking this blog, I think you need a new one. Painting or gardening, I hear does wonders for aggression. You, Madame, need to grow up.

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    2. Dear "Anonymous",
      You have to be the most ignorant, sorry excuse for a so called parent I have ever seen. Who the hell are you to sit here and say such things as you have here. Please tell me you are like 20 years old with no clue about the real world and please tell me you are not actually responsible for a child, an autistic child no less. You are obviously extremely uneducated and have no respect for people. you are a coward and a low life that really has nothing better to do then to sit here an judge.. if you do not like what is being written here what the hell are you doing reading it and then none the less taking the time to write back... You obviously have no life and are just some bitter person (if your not 20 you must be 80 with nothing else to do) GOOD FOR YOu if your "kid" is all of a sudden perfect with no special anything... you must be a freaking miricle or something.. yo9u must be some sort of Autism magician. It's sad that your so called kid doesn't want to have anything to do with something that is an integral part of him then you have faulted as a parent. From what I can see in this community is that we are all doing the best we possibly can to grow and prosper with our children. They do not need to be saved they need to be understood and the fact that you seem to be missing that tell me you are full of BS about being a parent to someone on the spectrum.SO MAYBE YOU CAN SPEND LESS TIME WRITING SHIT WE DON'T CARE ABOUT ON HERE AND GET A LIFE.. AND MANNER.. AND BALLS! thank you and sorry for the swearing but seriously.. low life people like this do not deserve anything else.

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    3. Dear Anonymous,

      I have been following Mommy Buddy for a while and usually I keep to myself and am quiet but I just can't ignore you. No way... you are first handily what is wrong with people today. First off I would like to congratulate you for being some kind of Autisim Magician... it's such a wonderful achievement that you made your son hate who he is and apparently saved him. You must think you are on top of the world. There is No way that someone as uneducated and ignorant as you can possible have a kid, and especially an autistic one. and if you really are...then I can feel nothing but exreme sadness that the child is stuck with such a sad rotten excuse for a person. You are a desgrace to anyone who is actually working and doing there best to help nourish our children. We work hard for all the little milestones and the little accomplishemnt. If I were your kid though I could see how I would need to be saved. You are a coward and in all seriousness a loser. If you don't like what is being discussed here do us all a favor and leave. What kind of sad pathetic excuse stalks people pages just to call them out.. you obviously don't have that many responsibilities and you obviously don't take that good care of your miracle child because you have all the time in the world to waste on here blabbling BS that well all can see. MAYBE IF YOU PENT LESS TIME ON HERE WRITING YOUR IGNORANT COMMENTS YOU COULD SPEND MORE TIMES EDUCATED YOURSELF AND GETTING THE DAMN MANNERS. CLEARLY YOU NEED HELP AND THIS IS A SAD CALLING FOR ATTENTION.. WELL YOU HAVE ATTENTION ALRIGHT.. TOO BAD WE ALL THINK YOU A FOOL... From a real mother of a child with autism stop embarrassing yourself it's becoming quite pathetic.... the least you could do is grow a pair.

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  5. Tracy, I hope you can ignore the garbage comments like the one from anonymous because I really enjoy your blog & the support I feel from moms like you who know exactly what I'm going through.

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