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.
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.
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
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.
*We have already had to have the talk with him, but that’s a crazy story for another post
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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.
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I am very fortunate to have a vocal readership. I receive a lot of comments, messages, and emails via my Facebook page, here, and on redOrbit. Some are of the “me, too!” variety, many are requesting advice, others are autism parents reaching out to an understanding ear.
Then there are the rest. The criticisms, the angry voices opposed to what I’m saying, the ones I’m just not sure about. The ones that make me shake my head and say “wtf?”
Yes, I actually say “wtf.” Clearly, I’m a fourteen-year-old girl trapped in this forty-something brain.
Normally I shrug them off. Occasionally I address them, when I feel like the writer is completely out of line or misconstrued my intent. More often I simply thank them for taking the time to read my work. It’s always nice to be read, whether or not it’s appreciated.
This week I received an email, in response to this post, that not only got my attention, it really got my ire up. Instead of merely ignoring or answering the email, I thought it would be better played out here, where I can share it with a wider audience. I honestly believe this is a subject that should be talked about.
Loudly.
Here is the email I received:
Dear Wendy,
I am assuming your story ‘Dear Son, You Have Autism‘ is real.
I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on your story, as quite normal.
Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling our kids with the whole spectrum of disorders.
This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has (sic) not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.
SXXXXX
ps. I worked my whole life as an academic, educator and researcher and remain very critical of many of the modern classification – labelling (sic) methodologies. In particular terrifying is that these people are ignoring huge probability of being wrong.
So many things to say here. Where should I begin? I think I’ll go through it line by line.
I am assuming your story ‘Dear Son, You Have Autism’ is real.
If you had taken the time to look at my website, you’d see that yes, in fact, our story is indeed true. I don’t write fiction.
I believe you should not label your son as autistic, definitely do not tell him about. He looks to me, based on your story, as quite normal.
Tell me, how, exactly, does an autistic individual look? I’m guessing you don’t look ignorant, yet here we are.
What’s in a label? You call yourself an “academic,” and that’s a label. Some labels are pretty awesome. “Nobel Prize Winner.” “President.” “Canadian.” Why not call a spade a spade?
The larger issue here is the statement that my son looks, to you, “quite normal.” What, pray tell, is “normal?” Should I tell my son that since he can “pass” as normal, that he ought to? That he must hide his true identity, like the Jews in WWII, light-skinned blacks in the 1950’s and 1960’s and gay teenagers today?
That opinion puts you in pretty bad company. To insist that my child pretend he is something that he is not for your comfort or your ignorance or his safety makes you no better than the Klan in my book.
Harsh words, yes, but so is telling me to hide my child’s true self.
I have no more intention of keeping Jack’s autism from him than I have of keeping his place of birth or Scottish ancestory a secret.
Jack was born in Indianapolis. He is a direct descendent of William Wallace. And he has autism.
To say that my son should hide his autism like something to be ashamed of is absurd, ignorant, and discriminatory.
And I will not do it.
Our understanding of psychology and the underlying chemistry is yet in the infancy.
We are ignoring the negative effects which the ‘modern ‘labelling’ (sic) may have on self esteem and confidence of children and young people. I am in fact terrified seeing how easily Educators and Psychologists (in fact ignorant in Chemistry, Biology, Medicine and many other relevant Sciences) are labelling (sic) our kids with the whole spectrum of disorders.
This is true. It would also appear that you do not have a firm grasp on it yourself, or you would understand that a neurological variance such as autism is not something to be “terrified” of. Your statement that telling autistics that they are, in fact, autistic, will crush their self esteem and confidence is the exact reason we should. The opinion that someone with a difference should think of themselves as “less than” is antiquated at the very least.
What is that telling my son? That he should be ashamed of who he is? That he should wonder for the rest of his life why he doesn’t seem to think the same way as his peers? Why, when telling him the truth will set him free of wonder and worry?
I want my son, and all people with autism, to be proud of themselves. To be confident. To know that there are people out there, like yourself, who fear what they do not know and understand. Autistic individuals face enough difficulty and hardships in their daily lives, they shouldn’t have to add shame and fear to the mix.
We have evolved as a people. We are better than that.
This also happened almost 40 years ago to my son, labelled (sic) as hypersensitive, almost abnormal – the label ‘autistic’ has not been yet in use.
He finished his tertiary education brilliantly, and is since years an IT expert co-working with a team of researchers on mysteries of our brain.
At this point I would like to point out that you appear to have autism and ADHD/ADD conflated. Autism as a term has been around since the early 1900’s, and ADHD/ADD are not spectrum disorders. I am around the same age as your son, and I, too, was diagnosed (not “labeled”) with hyperkinesis, or being “hypersensitive” as a young child. I am not ashamed of it, nor do I believe it was an incorrect diagnosis.
You also seem to be assuming that we have not had our child assessed and diagnosed with professionals who know anything about biology, chemistry, medicine or neuroscience. You claim to be an academic, yet how much of these do you know? My child has been seen and assessed my no less than twenty professionals, including specialists in brain function, speech and early speech acquisition, sensory processing disorders (including fine and gross motor function), psychiatry, and numerous other disciplines.
They all agree: my child is incredibly intelligent, and definitely autistic.
I am pleased that your son finished his education brilliantly, yet saddened by the sense that you feel the need to justify him. He did not accomplish what he’s done in spite of who he is. He has triumphed because of who he is.
And that, my friend, is no less than what I want for my son.
So, I end this on a lighter note than when I began. I beseech you to keep your mind open to differences, and understand that children like mine may very well be the future.
Certainly, hiding in shadows and telling lies is no way to live anymore. History has told that story time and again.
I will leave you with the statement my son Jack has about having autism. This is his story, after all.
“Autism is not about your voice. It’s about your mind.”
And that’s all we have to say about that.
A version of this post originally appeared on redOrbit blogs.
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