"every journey is more fun if you can laugh along the way..."

Autistic Wandering is No Joke

Posted by on Apr 1, 2014 | 0 comments

Autistic Wandering is No Joke

Every year, almost half of all children with autism attempt to escape, or elope, from a safe environment. Too many of them never make it home.

Today, April 1, 2014, we pause to remember those we have lost to wandering.

Wandering Graphic

From the Facebook event description:
“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.

For additional resources check the website: http://www.awaare.org/

Or find them on facebook: NAA Autism & Safety: Wandering Prevention

This is by no means a comprehensive list of every child and individual lost to wandering, but it is entirely too long already. Please, do your part to help make sure we don’t have to add more names next year.

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, 6/3/05
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, 7/26/12
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, 5/15/13
Charlie Manley, age 16
Savannah Martin, 2/20/11
Donivan Martin, age 16
Savannah Martin, age 7
Jason 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, 4/19/11, 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
Travis Stratton, 3/1/14, age 4
Kaliya Sullivan
Sean Taglione, 1/29/12, age 12
Desmond Thomas
Kristina Vlassenko, age 10
Christopher Wakeman, age 23
Amarie Walker, age 4
Skylar Wayne
Freddie Williams, age 13
Davin Williams, age 15
NNR, age 5, Bradenton, FL
NNR, age 11, Stafford, VA
NNR, age 12, Houston, TX

Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read More

Baby World

Posted by on Feb 28, 2014 | 0 comments

Baby World

We recently had a fourth child, so Jack is fascinated with babies. What they do, how they learn, how they’re born, and where they come from*. Jack is obsessed with babies in utero. Or, as he calls it, the Baby World.

You see, there is a whole Baby World inside a Mama’s tummy. One where all of the babies she’s going to have (and others as well, it would seem), have a whole community thing happening. They hang out, they race cars, they learn how to be “babies” for when they’re born.

Jack says he remembers being there.

I know a lot of children have pre-birth recall. I don’t doubt that Jack remembers some things about being born (he doesn’t seem to ever forget anything), but he also has a penchant for weaving a good tale. He’s figured out that if I am typing on the iPad while he’s talking, I’m writing down his story. As a result, he’s started to embellish things a bit. Often, his brothers join in.

On one particular occasion, while discussing the goings-on in Baby World, his two younger brothers told me all about the racetrack there, and how the babies all have fast cars and have races.

The fact that they had just watched “Cars” for the billionth time was not lost on me.

Jack tells me he was a sort of mentor in Baby World. He played with the other babies, he taught them to crawl, and teaching them to walk “better” (either he’s not a very good teacher, or they weren’t very good learners).

He told me “I crawled a lot of times with the other babies.  Wait… there’s no other babies.”

What?

He had just spent days telling me the intricacies of this other world populated with a multitude of unborn folks in my uterus, and in one instant, it was gone. I’m not sure where it went, but now when he talks about being in Mama’s tummy, he only mentions himself and his brothers (they all believe they were there together, pre-birth). But no racing, no lessons.

I’m not sure what happened to end Baby World, and I’m a bit sad to not hear the stories anymore. I’m thinking the reality of Kai, baby boy Baskin number four, changed his mind.

Now he has other interests.  Like carrying a beanie baby in his shirt and “giving birth” to it.  My boys take turns being the “mama” and the “baby” – “mama” has “baby” under a blanket, then gives birth.

Yes, this is what my boy children do for entertainment.

Jack is already talking about the children he’s going to have when he grows up and gets married, and how he’s going to be as a father. I’m glad he has a great role model to follow in his Dad.

I’ll be really happy, though, when he takes an interest in learning how to change a diaper.

big brother

 

*We have already had to have the talk with him, but that’s a crazy story for another post

 

Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read More

Extreme Air Park – Hostility, Greed, and Autism

Posted by on Feb 25, 2014 | 0 comments

Extreme Air Park – Hostility, Greed, and Autism

We in the autism community are, sadly, used to hearing about maligned special needs parents and children. It’s become an all-too-common topic in the news and blogs lately. While most of us know or are familiar with some affected persons, it’s rare (at least for me) to have a situation happen right in your own backyard.

Or down the street, in my case.

We live in Langley, British Columbia, just South of Vancouver. From what I’ve experienced in the almost four years we’ve lived here, it’s a really nice community. The people are kind, the schools are good, and children are welcomed almost everywhere. We have parks and playgrounds and activities for families on almost every corner. It’s not Utopia, but it’s a great place to raise a family.

As a child with autism, Jack is welcome with all other children. He has not been excluded from anything he has wanted to do, to our knowledge. He is gaining independence, but he does need accompaniment of his SEA for school activities, and a parent or caregiver for much of everything else.

Kelly Moonie and her son Kyle live in our community. Kyle, like Jack, has autism. I don’t know the Moonie family personally, but I hope their experiences here in Langley have been similar to ours. Most of them, that is.

Recently, Kelly took her son to the Extreme Air Park location here in Langley, an indoor gym of sorts featuring wall-to-wall (and up the wall) trampolines. We’ve been there ourselves, and can attest that it’s a lot of fun. For everyone. We even have a t-shirt.

Kyle was accompanied to EAP with his caregiver, who is charged with assisting him and ensuring his safety. Kellie was told she needed to pay the full price for the caregiver to enter.

Businesses that cater to children often admit a caregiver for free, or at least at a reduced price. Here in Canada, we have a program called Access 2 Entertainment, that addresses the issue directly.

From their website:

Launched in December of 2004, the Access 2 Entertainment program seeks to offer more opportunities for people with disabilities to participate in recreational activities with an attendant, without added financial burden. It is also designed to raise awareness and help businesses provide quality customer service to customers with disabilities.

It is vitally important that special needs children enjoy as much of a “normal” life as possible, and allowing caregivers to accompany them is a major part of that.

After their visit, Kellie sent an email to EAP, explaining this issue, and suggesting they change their policies. She received an email in return, assuring her there would be no such change.

Kellie answered the email, pressing them further on the issue.

The response she got was much less polite, and much more hostile.

From the CBC article telling their story:

“Our system is computerized. I am not lying to you. We know how many people are on the floor at any given time. But what would you know. C U next Tuesday,” replied (Michael Marti, on behalf of ) Extreme Air Park.

Yes, you read that right. C U next Tuesday.

With apologies for the vulgarity, C-U-N-T.

I don’t even know where to begin with this. Calling your customers names is never good business, but in the case of a special needs parent trying to enlighten you on a very important issue?

Firestorm.

Extreme Air Park is a bouncing wonderland, almost made for autistic kids. Maybe that’s the problem. They don’t want autistics. Perhaps I’m wrong, but that’s definitely the message they’re sending. By inhibiting equal access, the Extreme Air Parks are making it very clear that they don’t care for special needs individuals in their establishments. And if those persons wish to patronize the place anyway, they’ll pay for the privilege.

Charging a caregiver full price when they are only there to facilitate the individual who needs them – similar to a seeing-eye dog, if you will – is just plain greedy.

Special needs parents and autistics have enough struggles and obstacles in life already without ignorant businesses piling on.

Even if you do not have a special needs child, the way the company handled this is outrageous and beyond the pale. True, it may have simply been an unprofessional employee taking matters into their own hands, but when you’re speaking for an entire company, you should know better. I have no doubt that any parent attempting to communicate with EAP would have met with similar hostility and derision.

I could go on and on and rant and rave, but I won’t.

Instead, I’ll let you do it. Please.

Please take a moment to tell Extreme Air Parks how you feel about their policies, and the way they treated Kelly Moonie.

Below are the contact numbers for all of the Extreme Air Parks in Canada:

Richmond 604-244-5867
Langley 604-888-8616
Calgary 403-265-2733
Edmonton 780-479-7790

They are also on Twitter: @Extreme_AirPark

It would appear they’ve deactivated their Facebook account, but you can send them an email directly on their website here.

On behalf of Kelly and Kyle, Jack, the children of Langley, and special needs families everywhere, I urge you to take a stand.

I am.

But first, I’m going to go throw away that t-shirt.

Share this: Twitter | StumbleUpon | Facebook | digg | reddit | eMail Read More