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Photo Credit -Virtual Day of Remembrance Facebook Event They want to share this far and wide. |
The first time Red wandered away from me was when he was about three and a half years-old.
I am bathing his newborn brother, Blue. Red is in the bathroom with us at first, but then he wanders down the hall for a few minutes. I think that he's in his room playing. I’m at home alone with the boys. My husband traveled quite a bit for work. At the time, he was working as a contractor for the Air Force and would travel all over the world ensuring the safety of their computer networks. While I was home ensuring the safety and care of our children. At least I was supposed to be.
Suddenly, the doorbell rings. I wasn't expecting anyone this time of night, un-announced. I grab Blue out of the bath, wrap him in a towel and trepidatiously open the front door. It's my neighbor from two doors down, with baby Red in a t-shirt and diaper.
Mortified! What kind of moron does she think I am? How in the hell did he get out the door? It turns out, he went through the kitchen, through the laundry room door, and underneath a crack in the garage door. Beyond being mortified, I was grateful that she was so sweet about it. So many other scenarios could have played out. And for so many, they have. The very worst has happened for so many children on the autism spectrum.
Of course, I knew nothing of autism at this time. All I knew is that my child did not communicate with me the way that I expected him to as a toddler. He talked in garbled language that I did not understand. He had been diagnosed with a speech delay at the time, but that was it. No talk of autism. In fact, I don’t think I even knew what autism was or how big of a spectrum it actually is. This was 1999.
I knew nothing of this wandering scenario that I would eventually face again as the years went by.
For so many families, the child isn’t found within a five or 10 minute period. For many, they are never found alive. This very well, could have been our family.
Today, April 1, 2014, in a virtual candlelight vigil, we remember the many children with autism who have lost their lives after wandering.
The Kennedy Krieger Institute reported in a 2011 study that up to 48% of all children with autism will engage in wandering behavior or "elopement," which is defined as the tendency to leave a non life threatening space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.
The Krieger Institute also reported "35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means."
In 2012, the National Autism Association reported that "accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."
This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic children and the unspeakable tragedies that can, and have occurred as a result.
Please join us in respectful remembrance of the children who have died.
For more information on keeping our children safe visit autismsafety.org
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 121 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago