I call out hypocrisy when I see it. It’s what I do. And exempting myself from that practice would be the biggest hypocrisy of all. So that is essentially what I have done here – called myself out for not living what I believe, and then doing what I could to make that right.
I hope that when it comes out you will read it gently, that you will remember the person that you know that I am as you do, and that you will keep an open mind — and, more importantly, an open heart — throughout.
~ Waiting, Diary, January, 2013
~ The last thing I wrote publicly on Wednesday night
The night before last, I had a restless, miserable sleep. My last thought before bed had been of Alex. It had been of all the young people whom we have lost – who we collectively let down. It was of Rylan and Faryaal and Zainmay and George and Danny. It was of all the rest whose names and stories, whose absence is tattooed on my heart.
I thought of the comments readers had left about how we, as a society, fail to recognize the humanity of our disabled children. I thought of the ones drenched in emotion — in pain, in heartache, in frustration, in desperation. I thought of the ones pleading for justice and the ones imploring someone – anyone – to help.
And I thought of those who empathize with the killers. Who told me that I lack compassion when I dismiss their pain.
I fell into a fitful sleep.
Last weekend, I had a conversation with Katie that I never could have imagined having.
We talked about suicide.
Something had happened — something awful, unthinkable. A friend’s friend’s son’s classmate, a fourteen year-old girl, had taken her life. No matter how distant the connection, it was a wake-up call.
I searched for the right time to say something to Katie. There wasn’t one. I realized there never would be a “right” time. So it was at Sesame Place, as we munched on tacos overlooking the carousel, that I talked to my twelve-year-old about death.
I told her that teen angst is powerful. That anxiety can feel all-encompassing. That clinical depression is real and sneaky and dangerous — and runs in our family.
And then I told her that no matter how desperate she might ever feel at any point in her life, no matter how frustrated, lonely, afraid, hopeless, overwhelmed she might think she is, there is ALWAYS another way out. I told her that she could ALWAYS come to me. That she could ALWAYS say,”Mama, I’m having bad thoughts and I’m scared and I need help.” That if I wasn’t there or she couldn’t talk to me, there was ALWAYS someone out there to whom she could turn. She might have to search, I said, but they were there.
I told her that there would ALWAYS be a way out that did not involve self-harm.
The conversation was awful.
It was scary.
It was upsetting.
It was necessary.
I woke up on Thursday morning in a fog. As hazy as I was, though, my brain rambled on relentlessly, screaming its indignation to no one. (It’s what I do. It’s why I write.)
As I went about my morning, shuffling into the bathroom, rousing my Sleeping Beauties and wrangling at least one of them into the shower, the thoughts grew louder.
These women for whom I’m told I should feel compassion murdered a child. They stabbed him repeatedly until he was dead. I’m sorry, but no.
I might not be as big a person as I’d like to be, but I no longer have empathy for them and I don’t see that as my own failing – that’s on them. They squandered any chance they had at my compassion when they made the decision to kill their child. Before they went down that path? Before they planned a murder? The story could have taken a very different turn.
In Wednesday’s post, I wrote the following.
If the thought of hurting your child crosses your mind, get in the car and take him or her to the nearest hospital or police station and say, “I am thinking of murdering my child. I am no longer capable of caring for him.” Because the moment you entertain the thought of murder, you are not capable of caring for your child.
Parenting is hard. We need to help each other. We need to prioritize resources for families BEFORE they reach crisis levels and we need to make them easier to find. Above all, we need to figure out how to get from “here” to we really need to be. Because this isn’t it. And I don’t want to write another one of these ever again.
Had Alex’s mother and caregiver made that choice, I thought, the choice to seek help at any cost, the choice to surrender control because they could no longer bear the weight of their responsibility to care for him, I would have been able to find compassion. It was only after they’d chosen evil that it was no longer mine to give.
And then I remembered something.
I winced involuntarily, stung as I was by the open-handed slap of my own hypocrisy.
On May 1st, I posted a link to a CBC News story about a family in Ottawa who had left their child at a local police station. It read as follows:
Unable to get enough help from social services, an Ottawa family says they had no choice but to leave their son — who is living with severe developmental delays — in the hands of the government.
Amanda Telford said she brought her 19-year-old son Philipp to a provincial developmental services office on Tuesday and left him there.
“It’s the most heart-wrenching, gut-wrenching feeling in the world to have to do this,” she told CBC News.
“I felt dizzy, nauseous, upset, I’ve spent a very teary-eyed day today. This hasn’t been a very fun thing to have to do.”
Telford said Philipp is living with a severe form of autism that has him functioning at the level of a two-year-old. He also has Tourette’s syndrome and insulin-dependent diabetes.
Amanda Telford says three incidents over the weekend made her realize she can’t keep her son Philipp safe any longer. He often wanders away and puts himself in danger, she said.
“[A few days ago], he ended up four kilometres away at a restaurant at Ogilvie [Road] and St. Laurent Boulevard,” she said.
“Ogilvy and St. Laurent is an extremely dangerous intersection.”
Philipp also swallowed 14 pills of high-blood pressure medication, which required seven hours of hospitalization on Monday, Telford said.
After he got home, his mother said he wandered away again.
Telford said she’s asked for help from both provincial and City of Ottawa agencies, as well as her MP and MPP.
She said the response has been that there’s no room for Philipp in the over-burdened, under-funded social system.
“My husband and I are absolutely exhausted and medically unwell,” she said. “I am not able to do this anymore.”
Autism Ontario caseworker Anne Borbey-Schwartz said the situation the Telfords find themselves in is not unique. There has been a rise in the number of developmentally delayed adults with autism.
“This family is very brave, first of all,” Borbey-Schwartz said.
“[They] represent many families across the province, if not across the country, that are facing aging adults with autism, with a variety of needs, with very little support and very little services.”
When I posted that story, I added commentary. In it, I bristled at the description of the family as brave. I essentially condemned them for walking away from their child.
And therein lies the rub. I don’t get to have it both ways. I don’t get to tell people who think they might be capable of harming themselves or their children to seek help at any cost and then condemn them for doing so.
Please don’t get me wrong. Please. This is hard stuff to write and it’s harder to read and I implore you to avoid jumping to places that I’m not going. Neither the Telford’s nor anyone else should get a medal for not harming their child. There would be nothing more dehumanizing to their children or ours than to take that attitude. We don’t applaud one another for not being killers. That’s NOT where I’m going.
But to condemn them for making the decision that I said that I hoped that Alex’s mother and caregiver would have made? By God, what have I done?
I’m lost in all of this.
All I know, truly, deeply know is that we have to examine our own roles in it. Maybe that’s where I’m focused because it’s what I can think to DO right now and I feel the desperate need to DO something other than – along with – mourning. So that’s where I start. By saying that we have to call out our complicity in the dehumanization of autistics when we demonize their autism. That we have to recognize our participation in separating our children from society when we ideologically separate autism from our children. That we have to acknowledge our responsibility when we vent publicly, speak hyperbolically, allow fear to take control. That we have to see the message we send when we sit out the political process and allow desperately needed support programs to evaporate.
So that’s where I can start. But it’s not enough, Pragmatically, we have to find a way to help families in the moment. I have close friends with extremely severely disabled children. They love them with Mama Bear ferocity and have literally made it their life’s work to connect with them, to cherish them, to help them to be understood. As they should. As parenting demands. We don’t applaud one another for being parents either.
But I have to acknowledge that as heart-stoppingly beautiful as these relationships are, some of them, particularly the ones in which the children suffer from myriad co-morbid conditions and mental illnesses, can also be really hard. For the ones without resources, they are even harder. As my friend Tanya pointed out in an important comment on my post, many people have dual or multiple diagnoses, Bipolar Disorder being one of the most common. Far too often these secondary and tertiary diagnoses go unrecognized and untreated, both in the children and their parents, making the road far more challenging than autism ever could alone.
But as much as I feel like I need to acknowledge all of that, I’m afraid to say it here. I’m afraid that giving life to these thoughts in the same post in which I talk about the murder of autistic people is enough to make me a traitor. Enough for some to accuse me of condoning or explaining away or mitigating their deaths. From the bottom of my soul, I assure you I’m not, I can not. I will not. Ever.
Murder is murder. Harming a hair on a child’s head is horrific and unforgivable. Period. This is not up for discussion and no circumstances under the sun can make that different for me.
Yesterday, a reader wrote to ask that we look upon Dorothy Spourdalakis with mercy. “I cannot even imagine,” she wrote in her comment, “the amount of anguish or hysteria that would drive someone to this point, just that I know her road was tough.”
I felt compelled to respond.
“I would never discount how tough her road was — nor Alex’s,” I said. ” But she stabbed her own son again and again, until he was dead, then wiped the weapon clean and replaced it in the butcher block from where it had come. It was then and there that she lost my compassion and surrendered any claim to my mercy.”
I will not blame murder on a failed system. I will not write Alex’s nor anyone else’s life off as collateral damage in a battle for services. No. Just no.
And yet I fear the polarization that I see emerging around and among us. I’m terrified of the denial of our children’s inherent humanity, but so too I’m afraid of the denial of the challenges inherent in parenting a child for whose care one is ill-equipped. Sadly, some people are not up to the task. Some people have too many issues of their own to handle caring for their own children. That may be horrifying (on myriad levels), but it’s true. And there has to be a place where we can say both of those things without fear if we are to find a way to help those children.
When we divide and entrench, we fail to progress. And failure here leads to the very worst place imaginable. A place that makes our own hypocrisy look like child’s play.
Over these last few days, I have spoken off the record with people who are or have been on both sides of the desk in the Child Welfare system. Those who have worked for them, and those who have gone to them for help. Both say the system is a circular mess that ultimately works against our children. We HAVE to fix that. What is now known, at least here in Massachusetts, as the Department of Children and Family Services used to be called Child Protective Services. I want the name back. I want THAT mission back. Damn it, I want Rylan and Faryaal and Zainmay and George and Danny back. I want a do-over. I want the chance to show them real parental love before it’s too late.
But it is too late.
And that tears me apart.
I don’t know what else to say. I’ve already said far too much yet not remotely enough. I have nothing left. Nothing that will make this right.
For the sake of brevity, I shortened the quote at the top of this post. This is what originally preceded it …
It’s a post that has had my stomach in knots since the moment that I hit ‘Submit’. Not because I have any shame in what I wrote, but because I fear the way it will be received. But it’s truth. It’s my truth. And truth is worth risk.
This is my truth.
And, if it can help to stop even one more of these nightmares, it’s worth the risk.
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