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A Tragedy in BC – Failing The Caregivers

Posted by on Apr 27, 2014 | 9 comments

A Tragedy in BC – Failing The Caregivers

Autism Awareness (ought to be Acceptance) Month is winding down, and unlike April, it will not go out like a lamb. The lion of autism injustice is still roaring, louder than ever.

While people are walking and gathering and fundraising and celebrating the wonders and gifts of autism (which I wholeheartedly support), the dark underbelly is growing. It’s time for us to face it.

Death has become altogether too common in the autism community. Every week or so there’s another story about an individual who has bolted or wandered and not made it home. And every month or so, an autistic individual is harmed or murdered by a caregiver.

The tragedies are too numerous to count, and happening much too often. They are also hitting closer to home – both in proximity and emotion.

Our children are in danger.

Issy Stapleton. Alex Spourdalakis. And now, Robert Robinson.

Last week, British Columbia resident Angie Robinson murdered her 16-year-old autistic son, then took her own life.

It’s easy to automatically blame Angie. How could a mother possibly take the life of her own child? What kind of parent does that?

A desperate parent. A parent who has reached the end of their resources, both physically and mentally. A parent who believes they have absolutely no other answer.

Nobody thinks they could ever get to the point where suicide and murder are a viable option. We all assume if things get dark enough, someone will appear with a light.

No parent, even a parent of a profoundly disabled or autistic child, wants death (I’m assuming the best, of course). Even at the very end of the rope, we are still hanging on, holding out for a glimpse of hope.

But occasionally, the darkness consumes everything, and no light can get through. There is no hope. Or, at least, that’s what a desperate parent believes.

Yes, the violent acts visited on children by their own parents and caregivers is atrocious and unimaginable. No child should ever fear for his or her life in their own home. I am not suggesting that what Kelly or Angie or Alex’s grandmother did are acceptable in any way.

But I do understand them. And I can understand how things could get so desperate for them that they felt they only had one solution.

It all comes down to support. The proverbial village. The village that supports the child needs to support the caregivers and parents, too, and therein lies the rub.

Autism supports vary from country to country, province to provice. There is no standard of practice or care even within a the US or Canada. Children and individuals with autism often need intense, one on one care, either in the home or a residential facility. Not every family is equipped to handle these situations, yet there is often little in the way of respite and support for them.

As far as I can tell, support for caregivers is pretty much nonexistent. If a family member requires placement or full-time care and none is available, what is the caregiver to do? Between a lack of professional support and the overwhelming costs of respite and residential care, it should really be no surprise that parents are losing hope.

There are two victims in these crimes. Two lives lost. Two stories that didn’t have to end this way.

When a desperate parent decides to kill their child and themselves as a way out, the entire autism community has failed.

We have failed the child by not giving them everything they need to live a happy life to best of their ability.

We have also failed the caregiver by not recognizing that a healthy caregiver is essential to a healthy, happy autistic individual.

We cannot expect autistics and their families to survive and thrive if they are constantly at war just to get support.

Any one of us could reach the limit. Or anyone we’ve met. Nobody knows just how much someone can take, and what will be their breaking point. We need wholesale change in the way we support autistic individuals and their caregivers. The reality is if the caregiver is too stressed and is getting no help or relief, the whole family is in potential danger. These horrible stories will continue until something big changes.

Caregivers need to be heard and helped when they reach out. By the time a parent reaches the point of murder and suicide, it’s too late. Families need care and support from the very beginning, not just when things get rough.

Until then, keep your ears and shoulders available for your friends, in real life and on the internet (which is oftentimes who need it the most). Be a friend, be aware of what’s happening. Also, don’t hide your situation from the world. Open up to anyone you think will take you seriously.

And let your local government know how you feel about caregiver support and the lack thereof. Be loud, and be heard.

If the system can’t/won’t help us, we have to help ourselves.

lost boy

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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.

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.

Wandering Graphic

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

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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.”


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


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