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Candlelight Vigil for Autistic Children Who Have Lost Their Lives After Wandering

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Today the autism community has decided to honor those children that have lost their lives after wandering.

 

vigil

 

This event is a virtual candlelight vigil to remember and respect the lives of autistic children who have died after an elopement.

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 that “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.

Information compiled by the organizer, Jill Smo, of Yeah. Good Times.

Kaitlin Bacile
Au-Juna Banks-Taylor age 9
Ryan Barrett
Christian Baucom age 6
Jason Baucom
Adam Benhamama
Owen Black age 7
Aiden Bower age 4
Ashley Brock
Noah Burke
Carolyne Burns
Dena Burns age 6
John Burton Jr. age 7
Colum Canning
Kaymania Catt age 5
Alex Christopher 6/3/2005
Zachary Clark
Jeremiah Conn age 6
Holden Cottingham 2013
Taariq Cross age 7
Christian Dejons
James Delorey
David DeSantiago age 11
Devonte Dye age 5
Tatiana Eiland-Clinton age 3
Devine Farrier
Justin Gore Jr.
Darryl Gosein
Anthony Guerra age 9
Tristian Guffey
Liam Hamilton age 7
Elizabeth Hathaway age 10
Savannah Hauser
Benjy Heil
Jack Hensley
Emily Hope
Drew Howell age 2
Tristin Jeras 7/26/2012
Aiden Johnson
Marquail Johnson age 8
Jackson Kastner age 4
Kesia Kearse
Nathan Kinderdine
Michael Kingsbury age 7
Adlai Kugblenu
Anthony Kuznia age 11
Bernard Latimore
Aiden Lawson age 3
Kieran le Couteur
Erik Lippmann
Alexie Loper age 4
Mikaela Lynch 5/15/2013
Charlie Manley age 16
Savannah Martin 2/20/2011
Donivan Martin age 16
Savannah Martin age 7
Jared McGuire
Mason Medlam
Logan Mitcheltree
Christopher Morrison age 5
Blake Murrell age 4
Alyvia Navarro age 3
Avonte Oquendo age 14
Dominic Overton
Ariana Pivacheck age 9
Evan Reed 2012
Hannah Ross age 7
Blake Ryan 4/19/2011 age 4
Christina Sankey age 29
Luke Selwyn
Nicholas Shaffer age 12
Kaleb Shavers age 6
Kadeem Shillingford age 15
Jonah Smith
Julian Stacey New Zealand
Aaron Steele
Travis Stratton 3/1/2014 age 4
Kaliya Sullivan
Sean Taglione 1/29/2012 age 12
Desmond Thomas
Kristina Vlassenko age 10
Christopher Wakeman age 23
Amarie Walker age 4
Skyler Wayne
Freddie Williams age 13
Davin Williams age 15
NNR age 5 Bradenton, FL
NNR age 11 Stafford, VA
NNR age 12 Houston, TX

90 children. These are the names we were able to compile on short notice, and is in no way comprehensive. The listings at the end with the initials NNR are children whose names weren’t released to the media.

 

Today is about remembrance. Please use the above photo as your social media avatar and share this day with us. Let today be the day that we stand together and quietly remember those we have lost.

Safety and Special Needs Series, Post #2

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For this week’s post on Safety and Special Needs, I’m really excited to be running an informative and well-researched piece by Karla, from Tales from Beyond the Dryer VentBe sure to visit her site, where you can read about her adventures raising her daughter, Little Miss, and trying to keep an aquarium of fish alive.

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Safety & Special Needs: Identification

Communication issues are often rolled into the challenges faced by special needs families, and this particular challenge is never as frightening as when it comes to identification. Weeks before we took our first family trip with the Little Miss, I had nightmares of her becoming separated from us and being unable to communicate even the most basic information. Lost and terrified (and probably having the meltdown of the century), how would Little Miss be able to share her name or other identification that would help us to reconnect with her?

My first solution was simple, cheap, and effective – but there are a lot of options out there for families to try. I’m going to use this opportunity from Flannery and The Connor Chronicles to share with you some criteria for making the best choices for your own child’s identification. Then, I’ll finish up with links to some of the solutions available.

So, what did we do?

I’d seen some families use a strip of masking tape to attach a phone number to their child’s shirt… but I didn’t want Little Miss parading around with our phone number for everyone to see. Instead, I found one of those tiny jewelry bags, wrote all the contact info I needed onto a brightly-colored slip of paper, folded it up, slipped it inside the bag, and pinned it to the back of her shirt.

The emergency info in a zippie bag worked out perfectly for our brief vacation and gave my husband and me some much-need piece of mind. But, as Little Miss has grown a little older and “elopement” still remains at the top of her list of maladaptive behaviors, we’ve come to the conclusion that we’re going to need a much more robust solution.

What are the criteria for an ID solution?

Privacy: Above all, the emergency information has to be private. Little Miss has no real sense of stranger danger, and I worry about the very real possibility that someone could walk up to her, read her name from the emergency information, and tell her “Hi ____! Your mommy and daddy sent me.” If the person also happened to have a bag of goldfish crackers, Little Miss would have herself a new best friend.

Visibility: This may seem contradictory to the privacy thing, but visibility is critical in a situation where identification is in question. Odds are that if Little Miss has become separated from us, she will be confused and maybe upset. The challenges with her executive function will make it very unlikely for her to point to an ID tag hidden inside her shirt and say “Hey – call my mommy and daddy.” So, the thing has to be visible.

Durability: The emergency info in a zippie bag had one major flaw – after about three days of riding around pinned to the back of Little Miss’s shirt, we seriously needed a new set. That’s fine if your goal is only to get through a few days’ vacation, but if you’re looking for identification that can be worn daily, you’re going to need a LOT of zippie bags.

Hard to Remove: During our vacation, we pinned the zippie bag to the back of Little Miss’s shirt because we knew it would be nearly impossible for her to get it off. At the time, Little Miss did not know how to remove her own shirt. But times — they have changed. Now whether or not Little Miss is likely to remove her shirt is another question entirely, but it still begs the question – could she and her ID easily become separated? If the answer is “yes,” the solution is not going to work.

Enough Room: Our family is one of many special needs families out there that deals with multiple diagnoses. In addition to her autism diagnosis, Little Miss has epilepsy. If we became separated, it would be critical for first responders to know of this disorder so that they could respond appropriately. So, the right ID for us needs to include more than just a phone number.

Cost: With the budget already overloaded for therapy, school, doctor bills, and everything else, cost is always a consideration.

Options, options, options…

Google “special needs identification” and you’ll find a LOT of options. Since Flannery has been gracious enough to host me this far, I’m not going to wear out my good graces but going into all of them. Instead, I’ll show you some of the basic types out there and rate them on a scale of 1-3 (1 being a total fail and 3 being the best) according to our criteria.

Disposable ID Bracelets (Example: TigTagz) Description: Think of those single-use bracelets that amusement parks use when you buy the “ride all day” option – made of heavy laminated paper that you have to cut with scissors to remove

Criteria: • Privacy: 2 (you could wear the bracelet inside out), • Visibility: 3 • Durability: 2 (for single use) • Hard to Remove: 3 • Enough Room: 2 (allows about 3 lines of information) • Cost: 3 (less than $1 per piece)

Medical ID Bracelets (Example: Sticky Jewelry) Description: There are all kinds of medical ID bracelets available – and many kid-friendly designs offered on comfortable fabric bands. The added benefit of using a more standard medical ID is that first responders are trained to look for them.

Criteria: • Privacy: 3 (medical info is hidden on the back of the bracelet – unless you choose otherwise) • Visibility: 3 • Durability: 3 • Hard to Remove: 2 (Velcro closure) • Enough Room: 3 (allows up to 6 lines) • Cost: 2 (could be $25 or more with options)

Shoe Tag ID (Example: Medical ID Store)

Description: You could go for one of the official medical ID shoe tags — or do like we did and order an engraved luggage or pet ID (a trick we used on our second family vacation). The only big con to this option is that the wearer must have laced shoes.

Criteria: • Privacy: 2 (info is on the back, but some tags can get flipped over easily) • Visibility: 2 • Durability: 3 • Hard to Remove: 3 • Enough Room: Many tags allow up to 5 lines • Cost: variable

QR Code Stickers (Example: ChildID) Description: Each sticker has a QR code printed on it that can be scanned with a cell phone. While the QR code can still be decoded even if there is no cell signal/WiFi, the first responder does have to have a smart phone with a QR code app.

Criteria: • Privacy: 3 • Visibility: 3 • Durability: 1 (single- use, stickers can fall off) • Hard to Remove: 1 • Enough Room: 1 (short message + phone included) • Cost: 3 ($4.99 for 10)

Temporary Tattoos (Example: Tattoos with a Purpose) Description: These are like the temporary tattoos you get in a Cracker Jack box but with room for contact

information. The same I found is autism-specific, but there are lots of other versions out there.

Criteria: • Privacy: 1 • Visibility: 2 • Durability: 2 (single-use) • Hard to Remove: 2 (requires baby oil or alcohol wipes) • Enough Room: 1 (2 lines – if you write small) • Cost: 2 ($9.00 for 6 pieces)

Obviously, I’ve just scratched the tip of the iceberg with ideas to help identify your child. But I hope that with these criteria, you’ll be able to solve this important safety question for your own family!

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Don’t forget, the Safety and Special Needs series will run every Monday.  If you’d like to submit a post, please email it to nuttydingo@gmail.com.

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