Leaning In. Walking Away.

Sheryl Sandberg, CEO of Facebook and author of Lean In: Woman, Work, and the Will to Lead is in the news these days after she posted a lengthy Mother’s Day article on Facebook.  In her post she shared that in Lean In she might have missed a few key points. Specifically, on the one year anniversary of her husband’s death, she wrote “I did not quite get it.  I did not really get how hard it is to succeed at work when you are overwhelmed at home”.

I need to start this blog post by confessing that I didn’t read Sheryl Sandberg’s book which is unusual.  I read a lot. And hers is the sort of book I often make the effort to read.  But Sandberg’s book promised to annoy me so I avoided it.  Reviews suggested it was a book about how successful women could become more successful by maximizing the advantages they already had. I also got the sense that the less than subtle message the book might offer was that if you weren’t as successful as you had hoped then you probably only had yourself to blame.  Because, you know, life is fair and we all have the same opportunities and advantages.  Whatever.  As an extreme caregiver who has spent years grieving the loss of my career and professional identity I figured her book would either reduce me to tears, or piss me off sufficiently that I would want to set it on fire.  My husband gets antsy about lit candles, I hate to think of how he’d respond to a book burning.

I avoided Sandberg’s book because it appeared to be about the succesful life that I had wanted.  I had spent my early adult years doing everything I was supposed to do to be successful.  And while I never aspired to be the CEO of Facebook or anything like that, I did have some lofty goals and dreams. Until the proverbial crap hit the fan things seemed to be going tickety-boo.  I was doing all the right things.  I had pursued advanced education.  I had accepted rewarding job opportunities.  I married a great guy who would support all my dreams.  I had fantastic child care following the birth of my first child.  But then a doctor made a mistake during my son’s delivery and the life I had thought I would have – that I had planned to have – came to a screeching halt. And unlike what Sandberg’s book might suggest, that derailment was completely out of my control.

Sadly, I didn’t get it right away.   I spent several years trying to continue on the path that I had chosen.  I enrolled in a doctoral program in the health sciences.  I spoke at conferences and taught university and college lectures.  I worked part time.  And it was all too overwhelming. I felt I did nothing well because I was far too overextended. I was juggling a million balls and it was  just a matter of time until everything came crashing on my head.

Something had to give.  I walked away from doctoral work.  I quit my job. I resigned from my regulatory college.  I spent years where my only identity was that of an extreme caregiver.  It was the best I could do.  It was the only thing I could do.  During those years I loved my family, but often hated my life.  I was simultaneously grateful that we could afford to have me walk away from everything and deal with the crap (literally at times), while being resentful that life had forced me to walk away from what I loved so I could deal with all the crap.

I am grateful for Sandberg’s recent Facebook post.   Her recent post begins to tackle the patriarchal myth that hard work and success naturally go hand in hand.  Her recent post acknowledges that poverty, discrimination, life circumstances, and workplace practices – to name only a few issues  – often conspire against women (and men) to limit their success and curtail their dreams.  Her recent post acknowledges that life isn’t fair and bad stuff happens.
So to Sandberg I would say this.  First, I am truly sorry for your loss.  Really sorry.  However I am both humbled and grateful for your post where you admit that you got it wrong.  Thank you for acknowledging that many of us women are where we are not because we didn’t dream big and didn’t work hard, but because life handed us circumstances that curtailed our dreams and abilities.  Thanks for noting that for some of us “leaning in” might have involved falling on our face.

I find writing this post bittersweet.  On one hand I know that when I am 90 I will be glad that I made decisions that erred on the side of protecting Matthew’s health, my family, and my marriage. I have tried to live in such a way that my regrets will be minimal.  But yet I also know that walking away from my career and dreams hurt.  A lot. I had to let go of a great deal of who I was and who I wanted to be to ensure that the people and relationships I love thrived.  As an extreme caregiver there is no doubt that I alone sometimes got the short end of the stick.  The saintly caregiver martyr myth tells us that this is what caregivers are supposed to do.  We are supposed to sacrifice ourselves and our goals and dreams and never talk about how much it hurt or cost us.

 

I say this all this not to garner pity or congratulations for making the “right” choice.  I don’t feel I had a choice to make.  I say this only to concur with Sandberg’s recent post, and even more importantly, to remind readers that extreme caregivers often give up a great deal to care for their loved ones, including some pretty big stuff, like goals, dreams, and their sense of self.

 

Hearing dissenting voices.

Now I get it.

Last night on Facebook the conversation continued.  As many know,  I have been arguing for compassion for an overwhelmed caregiver/mother who attempted to kill her son with autism.  My point in all of this is that in cases of severe disability and total dependency we will only solve the problem of caregiver violence if we solve the problem of caregiver burden.  Or, as a good friend put it, in cases of extreme caregiving when an overextended parent finally falls apart it would be good for society to stop blaming the parent and starting helping out.  This friend was alway better with words!

I was told that by arguing for compassion for the mother I was saying that there was nothing worse than having autism.

I don’t believe I said that, but I am sorry if that was somehow heard because nothing could be further from the truth.  In fact, I value a world that celebrates diverse abilities and communication styles.  I value world where we are reminded that there can be different ways of experiencing and perceiving that world and I believe that people with autism have much to teach us in that regard if we take the time to listen. I would strongly advocate for the creation of that world and the amplification of autistic voices.

I was reminded that in the autism community some parents are trying to do things to “cure” autism and I think it was this comment that really helped me understand some of the reasons for the vigorous dissent.

I don’t think this hope for a “cure” is isolated to the autism community.  When my son was very small parents were re-mortgaging their homes and lining up to put their kids in hyperbaric oxygen chambers to cure cerebral palsy.  We never chose this option, but knew several who did despite the fact that there was a compelling research study out of McGill University debunking the “therapy”.  In fact, some kids were found to be at risk in hyperbaric oxygen chambers.  Some of the parents I knew were struggling with letting go of the image of the “perfect” child and this therapy offered, to them,  a ray of hope. They would do anything, at any cost.  Me,  I preferred to accept my child for who he was, including cerebral palsy, and to put my time and energy into creating the best life possible for him.

If I am hearing the offered feedback correctly, this is part of the fear among the autism community with the murders of children with disabilities.  Similar to the concerns we are hearing in the assisted death debate, people are concerned that these murders are evidence of a world that believes that death is preferable to disability, and in the autism community, death is specifically preferred to autism.  I would guess that some of the murders of children with disabilities are a result of that thinking, and make no mistake, that breaks my heart.

However as a blogger about extreme caregiving the situations I tend to comment on are situations where the caregiving demands seem to have outpaced what the caregiver could provide and there was little to no help offered to the caregiver.  The overwhelming situation persisted for years and the caregiver lost hope and seemed to think there was no way out other than death.

So when I argue for compassion I am not suggesting that death is preferable to autism, or disability. Not for a nanosecond.  I hear these stories about caregiver violence differently, and to be fair, I hear them from my vantage point as an extreme caregiver.  I hear these stories as saying that to the hopeless caregiver death is preferable to an unsustainable caregiver burden where they know it is just a matter of time until they can no longer care for their loved one.   I hear these stories as saying that the mother knew her child’s health and quality of life was wrapped up in her ability to care and when she could no longer provide that care the situation would become hopeless.  For both of them.  We need to remember that the case I am commenting on was a murder-suicide attempt.  For me, these situations are a symptom of utter desperation to which society failed to respond and then harshly judged. In these cases my heart breaks for both individuals.

I would hasten to add that the Latimer case is different and shouldn’t be thrown in to this discussion since that case involved euthanasia and perceived chronic pain and suffering. Including Latimer in this discussion needlessly complicates the discussion.

So, in the end,  I would agree with the comments offered that we need to value the voices and experiences of people with disabilities who are in the position to share those experiences.   I would hope that as these voices are amplified parents who have only just learned their child will live with a disability, autism included,  will come to understand that disability is not the curse they might imagine for their child.

My only addition to the conversation would be that if we are serious about ending caregiver violence, we also need to listen to the voices of overwhelmed caregivers.  We need to ensure they have the supports they require to continue to offer excellent quality of life to their children with very severe disabilities.  The two issues go hand in hand.  And, we need to ensure that caregivers’ lives don’t become the curse they have imagined, or the hell they have come to know.

 

 

Caregiver Violence: The Conversation Continues

It seems that my posts arguing for compassion for the mother who attempted to kill her autistic son have stirred up some discussion. Last night on Facebook there was a spirited discussion among a handful of parents who are raising kids with disabilities, notably autism. I waded in and was taken to task. While such conversations are often difficult for those of us who passionately support a particular viewpoint, it is good to try to find common ground and tease out our points of dissent. I appreciate such challenges to my thinking. It helps me clarify my ideas, but also forces me to see if there are places of convergence – which I think there are.

One of the parents who disagreed with my points posted an article by the Autistic Self Advocacy Network (ASAN) that can be read via this link.

http://autisticadvocacy.org/2012/04/killing-words/

The gist of the conversation on FB (as I understood it) disagreeing with my call for leniency hinged on two key arguments. First it was argued that by not fully punishing people who harm their profoundly disabled children we risk the safety of children and adults with disabilities. By not punishing parents who harm their disabled children we create a climate where violence towards those with disabilities seems acceptable. Second, it was argued that by offering leniency to extreme caregivers who harm their children we risk creating a hierarchy of value attached to people with disabilities such that the more severe the disability the more acceptable the violence.

I would argue both points. No surprise there.

My final concern about the discussion that ensued last night is linked to the article cited above. The article shuts down all dialogue about caregiver violence by resorting to an emotional guilt trip. It suggests that if we want to talk about the problem we should try to talk to the children who have been murdered. This, of course, is a logical fallacy and shuts down voices of dissent. The death of any child is a tragedy, but by shutting down the conversation about what might have lead to their murder I fail to see how we can identify solutions to solve the real, and I would agree unacceptable, problem of caregiver violence. Shutting down the conversation fails to protect future possible victims of caregiver violence because we haven’t taken time to understand how a parent arrived at a place where violence seemed like an “answer”.

First I need to point out that I strongly agree with one of the key points offered by several participants in the FB conversation who took me to task. We must ensure the safety of our severely disabled children. I just think that the way to do so doesn’t involve harshly punishing extreme caregivers who “snap”. I think the problem is more complex and requires a more nuanced response.

Disability exists on a spectrum. At one end we have people and children who are able-bodied. At the other end we have people with profound disabilities who are totally dependent on 24/7 care to survive. It is a well-researched fact that as you progress along the spectrum the burdens placed on the primary caregiver increase significantly. We also know that, presently, our Canadian society does not provide enough support to caregiving parents at the extreme end of the spectrum. Among caregiving advocates and ethicists these facts are well established.  Extreme caregivers are usually isolated, exhausted, physically and financially overextended,  and experience a range of emotional suffering including clinical depression.

No matter how much we might want to we cannot compare the caregiving burdens of parents at opposite ends of the spectrum. One parent worried that this argument suggested that it became more acceptable to kill or injure children at the extreme ends of the disability spectrum and created a hierarchy of ability/disability. I can see how she might arrive at that conclusion but I don’t see it that way. What this idea of a spectrum does do, I believe, is remind us that as we progress along the spectrum of disability the issue of caregiver burden becomes intimately linked to the increasing complexity of the care needs of the person living with a disability. We cannot separate the two and if we are serious about reducing caregiver violence and promoting the safety of those who live with disabilities we need to simultaneously hear and address the issue of caregiver burnout in a very real and constructive manner.

The Autistic Self Advocacy Network has the popular tagline “Nothing about us without us” across the top of their article that reminds us of the importance of hearing all voices. I agree with that statement. However I worry that conversations about caregiver violence become so concerned about the appearance of justice and the value of a life that we disregard the very clear voices of their overwhelmed extreme caregivers. Killing, or attempting to harm, a beloved child because you are so overwhelmed seems like a pretty loud message to me, and if we are serious about protecting people with disabilities I think we need to try to hear what that caregiver’s voice is trying to say. Part of the problem, of course, is that I am not convinced that our society is all that concerned about the lives of people with disabilities before we hear of their tragic murders. The message society is also sending makes it very clear that we are not particularly concerned about the lives of their overextended parents either

Tragic Rant: State of Emergency

About a week ago I posted about Justice Colin Westman, a local judge who refused to send a desperate mother who attempted to kill her severely autistic son back to jail.  An edited version of my blog post, following a request, was featured as a letter to the editor a few days later in our local paper.  Letters to the editor have followed, some agreeing with my position, some strongly disagreeing and chastising the Judge by noting that had the child been able-bodied the mother would still be in jail.

Therein, of course, lies the rub.  The child wasn’t able bodied and the mother had been an extreme caregiver for the better part of two decades.  I think we need to remember, had the child been able-bodied or had we as a society offered more comprehensive support to child and mother, it is unlikely the mother would have reached such a point of utter desperation.

Many people in my community have mentioned that they saw my letter and several have wanted to talk about my comments.  This is a good thing since it allows me to clarify my position further and to discuss the overwhelming challenges many extreme caregivers live with on a daily basis.  The most recent conversation was this morning, so the topic still seems current.

Some people seem think that because I strongly endorsed compassion for the mother I somehow also endorse the killing of one’s child.  Hmmmmm.  Seems like a logical fallacy if I ever heard one.

Let me perfectly clear.  Do I condone the killing of one’s child.  Of course not! My point, very simply, is that if parents are reaching a point where they think that the only possible way out of a situation is death – either they own, their child’s, or both – then the situation has reached a such a severe crisis point that we as a society have an ethical obligation to analyze and address the problem.

Sadly we as a society also have a tendency to want to turn blinders to situations like these until the crisis is so overwhelming that it is impossible to ignore.  Hollow rationale, unhelpful narratives, large-scale selfishness, and willful ignorance perpetuate many situations of deep suffering.  If we don’t “see” the problem it can’t be that bad, can it?  If it doesn’t impact us it can be so very easy to ignore.  Case in point.  Attiwapiskat.  One has to ask, how many attempted suicides or homicides will be necessary to declare a state of emergency for extreme caregivers and their children?

Because we need to remember Justice Westman’s case isn’t an isolated incident.  My blog is pretty young.  I have only been actively blogging for about two months.  And already I have written about two recent stories where a parent either successfully killed their profoundly disabled child, or attempted to do so, because the mother seemed to genuinely believe that death was either the best, or only, answer to their profound suffering.

I repeat my question.  How many times do we need to tell this story before extreme caregivers can declare a state of emergency? Because for many it is.

Salvation and the gift of community

 

IMG_1040Extreme caregiving has demanded that I look beyond myself and my own skill set to find others who can accompany and support me.  It hasn’t been a choice. Not for a moment. My controlling, independent streak was utterly challenged as Matthew’s mother. I learned in short order that  caring for Matthew is more than one person can accomplish, even his devoted mother.  I needed experts, additional caregivers, and a supportive collection of family and friends, both live and virtual, to be able to live this life with any kind of grace. I had to share my life, my home, and my family with the greater world to be able to care for Matthew adequately.  I will add that I am one of the lucky ones.  My life is filled with amazing people who journey this crazy difficult life with me.  Over the years, while I may have felt alone, I never have been.

Those who know me know that I resist the tendency to romanticize this journey of caregiving. This is one of the very few moments where I will do so.

Several years ago, as part of my studies in theology, I was required to write a paper about salvation.   You know, that concept that is a central aspect of the Christian faith.  Here is an excerpt of what I wrote.  Community features prominently.

Once a month I have coffee and muffins with four women.  All of these women are raising a child who is considered profoundly disabled and medically complex. These women understand the extreme stress, exhaustion, and uncertainty of raising a complex child. When we meet we collectively celebrate the uniqueness of our children, our resilience, and the resilience of our families and marriages.  We celebrate the hard won victories and support one another during the inevitable moments of sadness, anger, and frustration.  Sometimes we just drink coffee.  These women are my personal salvation.  ….They “get it” in a way that someone who has not walked a similar journey cannot. But more importantly, they show up and walk the journey with me.  Always.  For me, this group mirrors how Jesus provided and provides salvation.  He “gets it” because he chose to journey with humanity as one of us.  He lived in solidarity with humanity with whom he shared joys and suffering. I find God in the actions of my community. I find salvation in solidarity; it is in the “walking with”.

So there you have it.  The person who openly and actively resists the quest narrative of spiritual transformation as the overarching narrative of caregiving writes a quest narrative of caregiving.  But just this once. For me, community has been the gift found on this extreme journey. I think the catch, for me, is that community doesn’t necessarily make the journey easier.  Caregiving is still pretty darn difficult and I don’t want that part of the narrative lost, as it inevitably is when we veer into a quest narrative.  It is just that company along the way makes any path, particularly the difficult one, bearable.

God and “special” kids: Another perspective

If you’ve been reading my blog for any length of time you know that I resist the notion of the Erma Bombeck God and kids with disabilities.  Bombeck, many years before her death, wrote a vignette that involved God and an angel sitting up in heaven hand-picking special needs children for special parents.  In the early  years I found this idea affirming and comforting, but in recent years I have rejected the idea on both personal and theological grounds.

A few years ago I stumbled across a qualitative research article that explored this very idea with mothers raising kids with disabilities.  Since I find research interesting I got kind of excited.  Weird.  I know.   The research is summarized in a chapter authored by Gail Landsman in a book called Transformative Motherhood: On Giving and Getting in a Consumer Culture edited by Linda Layne if that sort of thing also interests you.

Landsman argues, as I do, that this idea of special parents being chosen for special kids is primarily to support the emotional well-being of parents who are raising able-bodied kids.  But it is her rationale for this idea that is quite interesting.  She reminds us that in our current world we have this sense that we can control things, including health and by extension the health of a foetus.  And in many cases she is right.  We can make the sick better.  We can do things to increase the chance of a healthy baby.  We know we shouldn’t drink or smoke while pregnant.  We know to take pre-natal vitamins and folic acid.  Some may choose to have pre-natal testing to identify any possible disabilities and some will even chose to abort that foetus. Landsman suggests all of this, taken together, has nurtured this idea that creating the perfect baby is well within our grasp.  Our society often forgets, or ignores, the idea that things just happen sometimes to good people who do everything right.  Life is not, and never has been, fair despite our need to believe it is.

For Landsman then, if we can create the perfect baby what does it mean for those of us who gave birth to a baby society considers not perfect?  You will note I emphasize society here.  Many of us “special” parents think our kids are perfect exactly the way they are.  Landsman suggests society has two responses.  Either the mother is to blame and did something wrong to create a baby with disabilities, or the  mother has been uniquely chosen for a special gift because they are a special person.

Landsman argues that parents of able-bodied kids actually buy into both ideas.  They will often choose to believe that their child is healthy because they did all the right things thus making them ideal parents and supporting their sense of control.  However they will attempt to extend some form of “compassion” to those of us with kids with disabilities by suggesting our kids, seen as less then perfect and healthy, are a chosen gift to a unique and strong parent.  This idea also allows many parents of “typical” kids to keep their sense of control while also hanging on to their idea of a benevolent God because that God has chosen parents for kids with disabilities who are uniquely gifted for the journey.

Landsman notes that this thinking then very easily transfers into the notion that God doesn’t give you more than you can handle.  Parents of able bodied kids are often quite clear on the idea that they couldn’t handle the demands of a complicated kid.  They know there is no way they could live the life many of us live.  But those of us with complex kids?  We must be different apparently.  We are saints and superheroes chosen by God.

It is a nice story – this narrative society has created.  Too bad many of us with extraordinary children don’t believe it is true.