untitled

**

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

Screen shot 2013-06-14 at 5.38.48 AM

~ 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.

It’s contradictory.

It’s frightening.

It’s messy.

And, if it can help to stop even one more of these nightmares, it’s worth the risk.

Alex

Rylan

Faryaal

Zainmay

George

Danny

*

Childhelp® –  800.4.A.CHILD (800.422.4453)

National Parent Helpline® – 855.4APARENT (855.427.2736) (available 10 a.m. to 7 p.m., PST, weekdays)

US Dept of Health and Human Services Child Welfare hotlines by state

33 thoughts on “untitled

  1. Nope. We don’t get to have it both ways. This really hit home for me when I read Carly’s Voice. Because of the strain that Carly’s autism had placed on the whole family unit, the family sought out respite…and then Carly was abused in her respite home. My biggest fear. We need to have strong voices together. We need to advocate for these children who are severely affected by autism that they create a risk to themselves and others. Their caregivers desperately need and must get support from trained caregivers! My heart breaks for these children. While I do not understand the decisions that their caregivers made, I pity them. They will forever live with their horrific choice, but we, everyone needs to know that there comes a breaking point. xoxo.

  2. “This is my truth.

    It’s contradictory.

    It’s frightening.

    It’s messy.

    And, if it can help to stop even one more of these nightmares, it’s worth the risk”.

    That’s all anyone has, Jess. I think everyone gets that. This is an unbelievably difficult topic to address.

    Love you,
    Mom

  3. When I first read the headlines, honestly my first thoughts were ” I am bit surprised. This Mom probably had no support and just snapped. Horrific, but I don’t really know their story “. Obviously after I read it and found out it was a plan between the Mom and caretaker/respite person,my thoughts changed immediately to the same way you and many others feel.
    I think though that when it comes to things like relinquishing care of your children if you can no longer handle it,people should not judge. However I definitely used to ” how could they send their child away,what kind of parent does that?”(hanging my head in shame). There was a boy here in upstate NY who had been living in a facility when he was killed by two workers on the bus that they transported him on to go to the mall. It was horrible and tragic,but those parents had to deal with scrutiny and condemnation on why they had placed their. son in a facility in the first place. As it turns. out,this boys aunt.was my.son’s teacher. When we talked about Autism and Cullen a few years. later, she told me how her brother and. sister -in-law had struggled so much with that. decision and a story about him jumping out. of.a moving car on a highway and it taking 3. grown men family members to essentially get . him back in the car safely and how this was. their daily struggle. He had gotten bigger, older and stronger and being home was compromising both his safety and his parents. She told me how hard it was to hear her own colleagues question why he was in a facility and how much those judgments had hurt their entire family after already losing their son,grandson, nephew.
    Sorry for the ramble but my.point is

    • So my point is this…we should not show that mother mercy, but we as a society have to stop judging families when they make decisions that maybe we don’t agree with or ” would never do”,but is a safe decision for not only their Autistic child but perhaps the rest of their family
      Also that whole ” God gives special children to special parents,or God only gives you what. you can handle”..yeah perfect example of why that is bullsh*t

      • Thank you for saying the whole “God only gives you what you can handle is bullsh*t.” I can’t stand that phrase -which BTW is NOT in the Bible

  4. I feel for everyone in this situation. I fear and feel there are more Dorothy’s out there with an Alex of their own who don’t see a future of hope anymore because of the pain of dealing with an overwhelming and isolating life. They are out there. They can’t speak up or won’t in fear of being ridiculed and admonished for having these thoughts because as a parent we are suppose to not think these thoughts and we are suppose to be the strong ones. Sometimes though being strong is not enough unfortunately.

    Why do I have empathy for her? For Dorothy and Alex? Because I have a little girl who at 5 has been so violent I am terrified of what she will be like at 13 or older. She is insanely strong, she has kicked me in the face and head butted me more times than I can remember. My husband has found me curled up in a ball to avoid being hit by her. She’s 5 remember. She’s hit her sister (7) so hard she’s given her a black eye. Respite care in IL doesn’t exist like it does in some other states. We have been on a waiting list for 2 years (2nd on it now for the last year). I have one family member who lives across the street and he’s 72 yrs old and can’t take care of her to give us a break because she’s hit him. Her own grandfather.

    When my sister who lives 800 miles away tells me she’s praying for us I just roll my eyes because prayers don’t help me. They just don’t.

    • I was recently told that IL is one of the worst states to try to get help in. I absolutely understand what you mean when you say prayers don’t help you. We are told on a regular basis by people who live across the country that they are here for us. Our families say they are here for us yet most of my family avoids my children. I have a son who sounds very much like your little girl. I just wanted to tell you that I hear you, understand you, and I’m making it my goal to make sure we are all heard.

      • IL has a database of registered special needs families that is used to distribute any money that MIGHT become available. They use the list to conduct lotteries to randomly choose who gets the incredibly limited resources. We have been on the list for over 4 years. Our status was changed to emergency when my husband and I both became seriously ill, but we still didn’t get any services. Emergency status just narrows the number of entries in the lottery, so we had better odds of being selected.

        Even if we are selected, we are only given a very limited amount of services from one particular provider that the state selects. If our family is competing with families with needs as great as Alex, then I want to pull us out of the running. But I’ve been told that is the only way we can document how poorly-served the residents of our state are. Maybe IL could use the money they pay to administer the list and buy real lottery tickets for the families. I figure I got as good odds for slamming down a Power Ball as I do getting services. Plus it would be more fun than having people come for home visits every year to re-register us and tell us things like they would have paid for the new locks we installed on our door if we had been selected before we had paid to have the locks already installed.

        This does not excuse the actions of these women. It does not lessen the hurt or loss of Alex. But we all lose if we focus solely on their actions and not on the system that provided so few options that this horrible, gut-wrenching murder somehow made sense. Their other choice would be to actually file charges if Alex had hurt someone, and then the prison system could try to get him resources. Condemning these women and finger pointing won’t help prevent this situation from happening again. Figuring out what states can and should do to help and holding them accountable when they don’t will. Doing that in the name of Alex and all the other children lost will honor their legacies and their sacrifice to make this world a better and safer place for those most fragile. That is empathy for those who matter, not for the women who clearly made a very wrong decision.

  5. Calculated, cold blooded killing. I have no pity, No forgiveness. This story has been ripping me apart for days. It’s just unimaginable. Rest in Peace Alex. And I hope your “Mother” spends her days rotting in jail, living with the guilt of killing her own child.

  6. Yesterday I found this link http://www.suntimes.com/news/crime/20696224-418/prosecutors-mother-and-caregiver-planned-for-week-to-kill-autistic-teen.html on MamaBeGood. Have you seen this one? These quotes here are from this news article:

    “Spourdalakis had been featured in several Internet videos earlier this year decrying the quality of medical care her son received and the length of time he had been placed in restraints while hospitalized. Alex also was seen in another video as an autism activist asked for help in finding a setting where the teen could be treated without being restrained.”

    “The teen’s murder followed a string of recent medical problems that saw him repeatedly hospitalized — a situation his 50-year-old mother believed had worsened the autism that already had left him unable to speak and sometimes required him to be physically restrained.”

    ‘ “So they planned to kill the victim in order to end his perceived suffering,” Assistant State’s Attorney Maureen O’Brien said in court.’

    “Their suicide pact never succeeded: Both women took drug overdoses, then locked themselves in the bedroom with the slain teenager. They were found semi-conscious inside the second-floor apartment on Sunday afternoon when Alex’s father and uncle came to check on the teen, prosecutors said as the women appeared in court to face first-degree murder charges”.

    ‘A local autism activist who had discussed the teen’s condition earlier this year with Dorothy Spourdalakis said she was stunned by the murder charges.“She seemed to me a caring, loving mother who only wanted what was appropriate for her son. I’m still in shock,” said Mary Kay Betz, executive director of the Autism Society of Illinois.’

    “But the alleged murder plot initially went awry last weekend when the stocky 14-year-old didn’t succumb to an overdose of his prescription medications.”

    The quotes aren’t in any kind of order, I just copied and pasted what stood out to me from the article.

    Am I making excuses for her? No… but she DID ASK for help. No one is denying that she was wrong. I have yet to see anyone applauding her decision. We can all absolutely agree that she was completely wrong.

    The question here is how do we change it. How do we band together and form a solid support network? Do you really think DCF is going to help? I’ve actually dealt with them here in Massachusetts. Several times, once about 5 years ago when my then 4 year old (at the time she only had one diagnosis of PDD-NOS). Her preschool reported me to DCF. They didn’t try to help me. They said there was no reason to believe we had neglected or hurt her and walked away. They sent us a letter telling us to supervise her better. This child who was barely verbal was crying daily about voices in her head. The pediatrician, DCF, and the school all shrugged and turned away.

    Had my daughter succeeded in her attempt to hang herself I was told I would have been found guilty of neglect and child abuse. People would have been blogging about me and and how awful of a parent I was. There is almost no help at all for these severe cases. The phone numbers you keep listing are going to listen to a parent and then give them more numbers for local help. That only works if there is local help.

    We’ve judged it from here to Sunday and back again. I don’t disagree with you, Jess. I’ve rarely ever actually disagreed with you (since I started reading your blog). We need to stop analyzing the symptoms and treat the cause.

    • Several times, once about 5 years ago when my then 4 year old (at the time she only had one diagnosis of PDD-NOS).

      That should have said “Once about 5 years ago when my then 4 year old (at the time she only had one diagnosis of PDD-NOS) tried to hang herself.

  7. I had the same conflicting thoughts that you described here. I hate the notion of parents giving up on their children and relinquishing them – but then the unimaginable happens and someone goes so far as to *murder* their own child, and then you are forced to completely re-evaluate your stance on the whole relinquishing business.

    I know it is cold comfort – but I do not think this means that you are a hypocrite… not exactly. I suspect, like myself, when you made your previous statement about your distaste for parents surrendering their children to others, you had not imagined such a gruesome possibility as what happened with Alex. How could you have? Most of us don’t let our minds wander that far into darkness when it comes to talking about children. I don’t like the idea of people not taking responsibility for their own children either…. my brother worked in the Family Preservation Unit of Child Protective Services for years… and the stories he had… it was a grueling job and took its toll on everyone who worked there. He always commented on how many times when they removed children from their homes who were being abused or neglected – how the family would physically FIGHT them… tooth and nail. But then once they were in court, they didn’t fight at all, they just signed them over the moment they were instructed to, no fuss. I always wondered about that – as it can be interpreted a couple of ways. 1) Those people were not interested in the responsibility of parenting and welcomed the opportunity to be absolved of it. or 2) Those people ultimately realized they were NOT up to the task of parenting their children, they were NOT good or responsible people, and thought their kids were better off in someone else’s care.

    Either option sounds bad… but I imagine that is a very hard crossroads to come to in one’s life (for some people at any rate) – the realization that you cannot parent your own child, that for whatever the reasons you are not up to the task. I do not like people beating their children, but I don’t want them to kill them either. I’d rather they terminate their own parental rights if it ultimately saved their child. I think the rub for may of us with children who have special needs is that we cannot stand the idea of parents who give up because their children are an *inconvenience* to them. Because there is a vast difference between being inconvenienced and havgin a genuinely hard time. And yes, some families have a HARD go of it. The problem, I imagine, is how to sort that all out.

    And, like you, I need to be clear on one point. I have no sympathy for Alex’s mother. None. Parenting… life itself, requires one to make difficult decisions at times… but whether or not to violently murder your own child should not really be up for discussion. Not only is that not a *choice* someone should be trying to make a decision about, that is a statement that should not even exist. We should not have a concept for it. At all. It *should* be unimaginable.

  8. If, as a society, we (rightly in my opinion) believe that ALL lives are valuable and deserve to be supported so they can be lived to their fullest, then we must ALSO provide the means to make that possible. And that means that we must support and fund the agencies, staff, etc. that make that possible. And do it fully, not half-heartedly, so that the ‘support’ available is neither real support, nor really available.

    Unfortunately, as a society, we do not seem to have the will or interest to do this. Or worse, we say we do, but refuse to actually foot the bill.

  9. For me, it’s not about looking at it from the mother’s perspective. It’s about looking at this situation from my children’s perspective. I don’t want my children to grow up in a world where news organizations justify the death of an autistic child. I don’t want my children to receive the message that its okay for me to kill them because its too hard to care for them. I don’t want to continue the mindset of autistic lives being worth less than neurotypical lives. If, after mass shootings, it’s inappropriate to immediately launch into gun control debates, then it should absolutely be inappropriate at this point to debate the quality of services available to families of autistic children. Yes, those conversations must happen, and they must happen soon. But how’s the time to mourn, to grieve, to honor this young man. Not to rationalize the mind of a killer.

  10. For me this is not about autism at all. There are parents who kill their normal (whatever that means) children. Some people find their life overwhelming – and that can lead to very distorted thinking. Sometimes it is an ordinary life that is overwhelming, sometimes it is an extraordinarily demanding life that becomes overwhelming.

    But when we condemn people for the acts of the overwhelmed (abandoning children or killing them – any child, not just special needs children) then we make it HARDER for people to admit to themselves or anyone else, that that is the road they are on and they need help.

    And we have to HEAR people when they tell us they are overwhelmed. We have our own denial that helps us dismiss things that scare us.

    Compassion and mercy are *always* things we should seek. That doesn’t mean we condone the acts, it doesn’t mean we are making excuses for them. Compassion and mercy for murderers doesn’t mean that we are making it easier for people to murder.

    • “And we have to HEAR people when they tell us they are overwhelmed. We have our own denial that helps us dismiss things that scare us.”

      THIS.

    • …”when we condemn people for the acts of the [severely] overwhelmed (abandoning children or killing them – any child, not just special needs children) then we make it HARDER for people to admit to themselves or anyone else, that that is the road they are on and they need help”

      Amen, Kinder. So well said. Thank you.

  11. Sometimes, even if you ask for help, there is nowhere for them to go. When my non-verbal son with autism and an intellectual disability hit puberty and started becoming aggressive and masturbating frequently, I began to call around to find out what options were out there if I became unable to care for him or his agressiveness got to the point that I couldn’t handle it. I never imagined thinking these thoughts in a million years. But I never imagined what puberty would be like either. I was told, “there is nothing.” Nowhere for him to go. If there was a crisis situation, and I absolutely could not get him calmed down, I could call 911 and they could take him to a stabilization unit for a couple of days and that was it. I called a lot of people to ask this question, and got the same response from all of them. One person told me there was a place in another state that might take him if we got on the waiting list. I was floored.
    We started an intensive behavioral program and have been experimenting with medications. Thankfully we were already in a waiver program that provided behavioral supports when all this started. I had also just gotten married to a wonderful man who is a Kung fu instructor and taught me ways to restrain him if I absolutely had to. And I did have to, just the other night. It just about broke me. I’m lucky that I have these supports, but the program that my son utilizes is always under the knife for budget cuts. I talk to families in situations like mine every day that get denied for this program.
    My advice-GET INVOLVED. I don’t play the victim role well and I will do what it takes to get him help. I joined an advocacy grop that works at the state and federal level to get people with disabilities the help they need, and make sure our children’s voices are heard and their faces are seen. The people who make decisions about these programs need to know that these are human beings. They are not just a number on some chart. We are real families, making hard decisions every day. As I type this, I am tearing up. I didn’t ask to have to make these decisions, just like my son didn’t ask to have autism. But it’s here and it’s real. This is our life. We take it day by day.

    • have you tried calling 211 info line? sorry i dont know were your from so forgive me if you dont have it.. but i know alot of states have 211 . also you can call DCF and try getting volunteer services.. i personally have had no luck at the federal leval my son is high functioning and has an average IQ so im fighting for help because im not “allowed ” to work and when i do have a job he ruins it for me. dcf and Icaaps have been my only saving grace

  12. I REALLY like this post. But hate that you had to write it. This shit is HARD, yo. There are almost no easy answers and lots of gray area. But your post about your own hypocrisy makes that point better than any he said/she said dialogue could have.

  13. I was struggling to pinpoint what I wanted to say when I refreshed and read kinder’s comment and it clarified some of my thoughts.

    I agree that this issue does not arise for me only in relation to a parent killing a child with autism. It doesn’t even only arise for me in relation to a parent killing any child. There are other kinds of murders that seem inexplicable in the sense that the murderer would have looked like a good person evaluated only a little before the event. Think of the friends of Dzhokhar Tsarnaev expressing their total shock over their seemingly kind and generous friend committing this terrible act. Dylan Klebold apparently had good parents and was a great kid growing up. Alex Spourdalakis’s mother took devoted care of him for many years.

    I don’t think any of the terrible acts committed by these people happened because society at large failed to be sufficiently condemnatory toward murder. I understand that to the families of the victims, and to others, it can seem like you’re trying to make excuses by looking for reasons why these apparently ‘good’ people could do terrible things, or as though you feel worse for the killer than you do for the victim. But… if we don’t talk about it, how are we doing to prevent it next time? If we can’t identify the factors that go into making a ‘good’ person capable of doing an evil thing, we can’t stop it. Spourdalakis’s love for her son, which seems genuine, did not prevent her from killing him. How can that be? I feel like we need to know that, and we can’t know it without trying to learn how she got to where she got. I never want that to diminish the reality of Alex’s personhood and his death.

  14. While you may feel like a hypocrite, I see your posts dripping with emotion. You looked at both situations from a very deep emotional place. These stories strike us to our cores as parents and as human beings. Jim is right. This shit is hard. Our experiences shape our reactions. I appreciate as always your candor and courage to put it all out there to be dissected. This world is a scary place.

  15. You are right that this is all hard.. I can see that there was a lot of anguish, frustration, etc. in the situation with Alex, HOWEVER, the hypocrisy of the situation is what really defines my feelings. His mother is quoted in articles during the struggle for care for Alex that he was being treated like an animal, dehumanized, but when you decide to take his life and, on top of it, you decide to take it in a very violent way, while you on the other hand take pills to quietly slip from the world.. I ask the question – Who was dehumanizing Alex at that moment? Did you think it wouldn’t hurt him? He wouldn’t care? He wouldn’t notice you coming at him with a knife? The nightmare that kept me awake that night was the fear and betrayal that may have been going through Alex’s mind at that moment.. the WHY? WHY would you hurt me? It tears me up!! I prefer this to be my last thought on this for a few days.. I will spend the weekend holding my son and savoring every very special moment with a kid that has brought more joy, love and celebration to my life than anything.

  16. I’ve been reading your posts on this and others too. I mourn for Alex and the others. And for his Mom….she should be held responsible. Period.

    Now, I ask myself why? Society needs to change. Big request right? But I implore that needs to happen. At fourteen Alex’s needs weren’t being meet. I suggest that was the probably the case his whole short fourteen years of life Yes, he has significant needs BUT geez we put people in space over 50 yrs ago! And yet we can’t figure out how to collectively work to educate and meet needs to individuals similar to Alex…and like my own five year son. This requires an “all-in” approach by many people and groups. For Alex I ask these questions….where was the medical help? Recently and throughout his life? Was Alex also a victim of the crazy insurance circus that sends you in circles before medical professionals can even try to help? DSFS offered help…what does that mean?!? And what help is that for Alex? Is it even realistic help? What about his education? What tools and interventions were given to him to allow him communicate and gain independence?

    These questions and others are what I answered and debated. For it is my belief that society must shift on what we believe is warranted for individuals like Alex…then we can hope to avoid more tragedies like Alex. We will then be able to embrace them an true individuals as really SEE them and their interests, hopes, dreams….

  17. I may be biting off more than I can chew, but I feel like a few more points of perspective need to be thrown into the mix. First, about judgement. All of this goes against a fundamental belief of mine. May I never sit in judgement of another person, lest that judgment be turned on me. I choose to separate the person from the choices. Feel free to judge the actions, but not the person. We all can agree murder is wrong. But the people involved…I simply cannot judge them. There is too much unknown. And, because of my spiritual beliefs, I leave judgement to a God far wiser than me. Second, all children are vulnerable. In no way do I want this to minimize the value of Alex or his life, but people do horrific things to children every single day. Children are easy targets of unspeakable acts…and they do not have to be a special needs child to be murdered by the hand of a parent. And as much as we may want to feel protective of “our” subset of children, ALL children are vulnerable. Thousands of children are regularly failed by parents, relatives, guardians and the “system.” Third, taking on that system. It is easy to say, “We need to change this.” We know the “why.” I believe we can all agree to that. But who is going to do this? How are they going to do it? This is a massive issue…all across our country, with different systems by state. I am not saying that it is mission impossible, but I am tempted to believe so. And, although it would be a noble crusade, I don’t think that it will change for a very long time. Even for our children. I think the change will have to come from outside the system, in spite of the system, before the system is ever tackled. Frankly, I don’t trust the system. (From painful personal experience.) And, the reality is, more and more children are vulnerable every day. Our autism community is expanding at alarming rates. More and more autistic teens are “aging out.” More families are going to be struggling, with less help and available resources. Fourth, reality bites. And, the harsh reality is that, just like the greater community of all parents and children, we are going to continue to have tragedies. Sometimes accidental and sometimes intentional. The system is broken and will continue to fail children and desperate families. It is not a matter of IF this is going to happen again…it is a matter of WHEN. Sure, we can advocate, educate, raise awareness, make better plans and procedures for emergencies, etc. But, we are not a Supreme Being or Superheroes. We must not take on the responsibility of the mistakes made by others. We can no more stop these acts than we can stop a moving train with our minds. When people crack, they have reached their personal limits. We have not reached ours yet, thank God. Hopefully, we never will. Fifth and last, I think we need to flip our perspective around. I think we need to look at how FEW parents and caregivers do this. Don’t get me wrong, I know that abuses will continue to happen (we know that from Barb), and people will still make mistakes, but very few parents resort to the act of murder. In a way, I feel that I fight every single day to hold myself together for my family. I have just told a couple of friends that I have badly neglected myself over the last year, physically, mentally, emotionally, spiritually. I simply am too busy caring for my family. And, I spend a lot of my “freetime” supporting and encouraging others on similar journeys, educating the community, and spreading hope. I feel like I walk a tightrope every single day, while juggling flaming bowling balls, over a pit of crocodiles. I am not going to get into a tit-for-tat about who has a harder journey. The particulars really don’t matter. What matters is that our journey is HARD for us, but we are making it. My family is fighting everyday to stay together and move forward. And this morning, we are all alive. I consider that a daily victory. I have no idea the burdens or challenges that tomorrow holds. I can only pray that I never reach the point where I have lost hope. I pray that I never believe that death is the easy way out. I stand between my daughter and her attempts at self-destruction every day. I physically spend as much of every 24 hour
    day as I can at her side. Protecting her from herself. And I am only human. One misstep and I could lose her. No pressure, though. If I fail at my daily battle…if she succeeds at her daily quest…if others rush to judgement after never walking a single day in my shoes, will the community have MY back? And what of the “system”? Will they decide that, since I failed with my oldest ASD child, that they would need to remove my other ASD child? Or my non-ASD child? So, I end with this, I do not look to the system to fix these problems for me. I look to God and myself and the resources I can scrape together. I pray that the community will always have my back. And, may I never sit in judgement of another parent, lest the judgment be turned on me.

  18. This is such a true post about something that people refuse to admit. We are sometimes contradictory in what we think – we are human. We have emotions. But I’m with you, no matter what we think at a moment, harming a child is not a choice that anyone should make. We are supposed to be the voices of our children when they cannot speak for themselves or to ring louder when they can. There is always some form of help, guidance, assistance, something – even if it is not the best of what we want. I know I’m rambling and probably going on a merry go round now with my thoughts its just that its a hard subject to talk about let alone face daily. Let me just say this, it was a great post and thank you for the courage to write it so eloquently. If it had been me it would have been run on sentences and lots of cursing.

  19. Jess, you’ve received so many comments and thoughts on this post, but I feel compelled to weigh in because this topic is somehow important to me, as it is to you and many of us. I applaud you for seeing the contradiction in your positions, but it is this, “It was then and there that she lost my compassion and surrendered any claim to my mercy” that I wanted to address… Compassion and mercy are essential in a society that makes progress. God asks us for it, and I think we need to find it. Not justify the act, but find the mercy….

    Unless you have faced the dark, black thoughts of suicide, and taken it as far as real attempt, you cannot likely understand the state of mind of someone who is considering taking their own life. It is easy to say rationally that there is always someone to turn to; it is unlikely that someone attempting suicide feels like there is anyone to turn to. Similarly, unless you have lost your grip on your sanity to such a degree that you would consider taking your child’s life, you cannot imagine the state of mind of a person who would consider doing such a terrible, terrible act.

    I also think, unless you have experienced raising a violent teenage autistic child alone, possibly without the relief and support of family, or therapists, a Julie, Ms. J, Dr. Dreamy, or Luau (or even Katie, bless her, who also relieves along the way in her special way)… you cannot understand the terror, isolation, and shear torture of raising such a child, experiencing daily abuse and fear.

    And unless you have attempted find help and been told “it’ll be two weeks until you can see your Dr.” (while bawling uncontrollably on the phone that you can’t go on) or put on a wait list for “respite” for over TWO years, you cannot possibly understand what the future looks like. (Bleak, or scary).

    And unless you truly understand the quality of “care” a parent would be contemplating for their child in such foster homes and residential care (it’s truly horrific in many instances – read this report from BC, Canada for an example http://www.rcybc.ca/Images/PDFs/Reports/RCY_WhoProtectedHim-WEB%20VERSION.pdf), you cannot understand the torment a person would go through when considering “I can’t do this. I can’t survive this. But I also cannot turn my child over to THAT”.

    No, none of this makes murder justifiable. None of it. But to condemn and judge, to remove your mercy for someone and something that you cannot possibly understand, it taking a position that you are judge and jury despite not understanding that person’s reality.
    I will note that you’ve had many more responses to this post than your 2011 posts, and I think that is because your writing is less stridently condemning; which I would suggest fits more with the community of 14,000 readers you have attracted.
    We do need a better way – early diagnosis, early intervention, and appropriate, professional and sufficient support – that would be a start.

    • ” you cannot understand the torment a person would go through when considering “I can’t do this. I can’t survive this. But I also cannot turn my child over to THAT”.

      That right there says it all. Thank you for finding those words and sharing them. I’ve had that exact thought before.

  20. As an Australian, I am not familiar with the case you are describing (I will have to go back through your old posts and catch-up!)

    But your words ring true to what it already running through my head from what I have seen.

    As a parent of 4 special needs kids, there are days I think “this is all too hard” but you are letting your child down if you give up….it’s even worse when you are drawn to harm or murder!

  21. This was a good and honest post.
    I will never understand people who ask for empathy for a murderer, I doubt they do that in the murder of non disabled children.
    One thing that confuses me is that I think that many times it’s not the lack of services that we see on cases of murder and abuse, we see parents who got the chances of having services murdering their children, they just hoped the services would change their child, the “right” therapy, medication, treatment would work, when it doesn’t they give up hope and murder.
    There have been cases where the parent refused services and abused/murdered their children, where other relatives would be willing to help, etc.
    I think this case and others are more about when a parent puts all their hopes into using the right therapy to “save” their child from autism and finding a non disabled child in the end, they give all their lives and energy into it, use all resources and dangerous treatments, they some times abuse their kids in the name of treatment and in the end it doesn’t work, there is no cure for autism so it will never work, when parents who are putting every hope in this notice that it’s very dangerous. This is more dangerous than lack of support and more easy to make a person to decide and chose to murder, it’s not an excuse but it has a bigger part for me than lack of services ever had.

    Not that any of this is an excuse for murder and we are not supposed to be used as hostages to make people give services or people kill us for caregiver burn out.

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