Going our separate ways.

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Don’t worry.  My husband and I aren’t divorcing.

But we did spend the weekend apart.  A few years ago I read an article authored by another mom raising a complex child and she noted that one of the coping strategies she and her husband found helpful was spending time apart doing something of their own choosing.   This time away could be used to do anything they wanted – fishing, hiking, city fun, hanging out with friends, or silence.  The idea was that for a few days their wishes and needs took centre stage behind even their spouse’s.  They still took holidays as a family, and as a couple, but they also made sure that personal time was a priority as well.

Until recently my husband and I only talked about this idea.  Sure, he had “boys'” weekends at the cottage and I had similar “girls'” weekends, but we weren’t intentional about it.  Since purchasing our own cottage we have made a point of each having time alone at the cottage.  Since we are both introverts this works well for us.  We have both found we appreciate a couple of days where we can both unplug and engage in whatever activities speak to us without worrying about our partner’s happiness or sense of inclusion.  While away my husband tends to binge watch sports, fish, kayak, and read.  I prefer to hike, read, knit, quilt, or binge watch favourite TV shows that I never have the time to enjoy during my day-to-day life.  I worked through most of the Call the Midwife series during such retreats.

These past two weekends I enjoyed chipping away at my goal of hiking the entire Bruce Trail.  The first weekend my husband joined me at a quaint B and B and we enjoyed some lovely, kid-free couple time.  After I finished hiking we visited local wineries and ate dinner at a quite bistro.  But, this past recent weekend I was off hiking while my husband puttered in our garden, and watched the Raptors lose while sipping a cold one.  We were both happy.  My husband has absolutely zero interest in hiking 25-30 kms at a stretch.

It took me a while to get over feeling selfish every time I took off.  Years ago I remember reading the classic Erma Bombeck vignette where God and Her angel are deciding which parent should raise a child with special needs.  For many reasons I disagree with the theology behind the story, but one thing that resonated was that God believed that the parent needed to be selfish to be able to cope.  If the parent wasn’t then it was a just a matter of time before he or she became so enmeshed in their child’s journey  and needs that it would become destructive to both.  As an extreme caregiver I can totally understand this sentiment.

So my husband and I will continue to nurture our selfish streak by periodically taking breaks, including breaks that allow us to go our own separate ways.

 

 

 

 

We all have a story.

The past weekend I participated in an organized 80km group hike.  As often happens for stretches of the hike I walked alone, but there were also parts of the hike where I joined another hiker, or a group of hikers.   On the second day of the hike I enjoyed chatting with a lovely woman for about 10kms.  Her name was Paula.  We talked about our kids and our families and it eventually emerged that I was parenting a child with signifiant special needs.  Paula shared with me that her adult nephew also lived with cerebral palsy and that her sister-in-law had spent recent years speaking about caregiving.  I wish I could meet her sister-in-law.  It sounds like I would really like her!

Paula was lovely and told a wonderful, yet at times sad, story.  As she concluded around the time we were arriving at a check point, we all have a story to tell.  I wish I learned her last name so we could have stayed connected.  She told good stories.

I spent many of my early years parenting Matthew feeling very alone.  I was convinced that that my story was sufficiently unique that there were few who could relate. In support group meetings my child tended to be one of the more complex children which added to my feeling of isolation. The notion that disparate stories might connect with mine was a place in my journey I hadn’t reached yet.  I desperately searched the bookstore shelves hoping to find a book written by a mother who had lived my life.  At the time there weren’t any.

In later years, as I read about narratives of chaos thanks to Arthur Frank, I learned that this experience is not uncommon – though I won’t suggest it is universal.  When you are so deep in your own narrative of chaos, which I was at the time, it  can be hard to connect with any other stories you might hear.  It isn’t that the individual lacks empathy, or is being selfish or egocentric, but rather at that point in time their particular story is so overwhelming that it becomes all consuming.  Your view of life, at least for a while, becomes myopic.  You are so concerned with keeping your own head above water, that seeing that lots of other heads are also out bobbing in the waves may take a while.

As I began to emerge from my own story of chaos and was more able to hear other stories of caregiving (with or without the chaos part!) I found that I increasingly connected with these stories.  The stories of parents of kids with autism, cancer, or mental health disorders really resonated for me.  I could relate to many of the feelings that those engaged in spousal or elder care articulated.  And as I listened more, I found that many of the themes of my own story could also be heard in stories of divorce, death, separation, and other form of loss people experienced.

And then the light bulb went off.  I wasn’t alone. Most of us by the time we have been adults for a while have a story to tell.  It is pretty difficult to get through this life without experiencing loss, trauma, or suffering.  What perhaps was different about my story was that is was fairly public.  People who met me could see what was I coping with by simply looking at my son. Others’ stories of loss and suffering were more hidden, and less often told,  but were no less traumatic or overwhelming.

Among the special needs parenting blogs there is a strong sentiment that unless you are a fairly similar parent other parents probably don’t “get it”.  And I don’t disagree that there are parts of our stories that don’t overlap.  But I think if we listen carefully to one another we might find we have (a lot) more in common than we first thought possible.

It is too bad that our society is so afraid of difficult stories.  I think one of the reasons I felt so alone is that we often avoid sharing our scary stories because our society really prefers we pull up our socks, put on our happy face, and carry on.  Communally we  often spend a lot of time shutting  down these stories of chaos. The fact that there are times in life that isn’t possible, or healthy, is irrelevant.

Would people who are suffering feel less alone if we were a bit more transparent with our stories?  Since most of us seem to have one.

After…

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There are moments in life that change us.  Marriage, parenting, graduation, retirement – many of life’s major transitions divide a life into a before and an after.  In many situations who we are, how we live, and how we see the world radically shifts after these moments.

However for some of us there is an After.  There is a singular moment in our life that is so earth shattering that  it radically changes everything about our life and who we are in such a profound way that is impossible for us to avoid being fundamentally changed.  These moments can be deeply traumatic.  It is as if the fabric of our world, indeed ourselves, has been rent in two and the pieces imperfectly joined.  We are still whole, but the division is noticeable – at least to us – and is permanent.

My After was the birth of my second child – the son who has inspired this blog.  Matthew suffered what has been described “catastrophic brain damage” during his delivery.  This brain damage was caused by a physician.  That fact has been affirmed by two separate courts that decided that Matthew’s birth involved medical negligence that caused the significant disabilities with which he lives.  A doctor’s decision irretrievably changed my son’s life, and by extension, mine.  The moment this man picked up a pair of forceps I became an extreme caregiver.

For a long time this angered me. Really, really angered me.  It took me years to begin process the rage that I directed towards this particular individual.  I pinned the losses and suffering of my son, my family, and myself, on this individual.  Peace was elusive, and while I hid the worst of it, my anger was destructive – at least to me.

Because I am a little weird I worked through most of my anger by studying theology.  I often joke that my graduate work in theology was an expensive and labour intensive form therapy.  But these studies reminded me that life is random and unfair and only God is perfect.  To be human means that we make mistakes and it is unfair to hold a physician to expectations only appropriate for the Divine.

Last week I attended my youngest son’s music concert.  My son attends a very small private school and my family has been members of this school community for many years. As I milled around the foyer after the concert I noticed this particular physician standing off in the distance.  It seems, at least for a while, we will be members of the same community.

For a moment I was rattled.  I wasn’t sure I wanted to share My community with Him. 

And then it occurred to me that  we were okay.  My son was okay.  I was okay.  My family was okay.  My marriage was okay.  Heck, we’re pretty happy most days.  It took me 17 years, but I am hoping I have found a new After.  The moment I was irretrievably changed because I could finally replace a bottomless soul destroying rage with a sense of peace.

 

 

Sometimes being realistic is overrated!

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A year ago we bought a cottage in close proximity to Ontario’s Bruce Trail.  I like hiking and being outdoors so I took advantage of our nearness to the trail to regularly head out for a bit of a walk in the woods.  After a while I decided that perhaps I would try to hike the entire Peninsula section which is one of nine sections of the trail – about 160km.  I liked the idea that this goal would take me to new places of the trail and experience new destinations.  I would see things I wouldn’t see if I just stayed on the part of the trail close to my cottage.  And then, because I tend to be like this,  I figured if I was doing the Peninsula section of the trail I might as well do the whole trail.  All 894 kilometres.  So I set a goal of completing what is called an End-to-End by my fiftieth birthday next year. Go big or go home.

You would think that as an extreme caregiver, with very limited time, setting ambitious goals might constantly set me up for failure and disappointment.  And sure there are times I have been disappointed because I couldn’t complete a goal I had set.  But generally speaking, because I was audacious (or stupid) enough to set goals in spite of my crazy life, sometimes without really thinking, I have enjoyed so many adventures that wouldn’t have happened otherwise. Had I stopped to consider how realistic a goal might be in light of my caregiving responsibilities I probably would have attempted very little. And yes, some goals have been re-negotiated along the way. My PhD attempt has been put on hold twice.  But heck, I have learned a lot along the way and none of that would have happened had I not just impulsively jumped into the proverbial academic pool and started swimming.

This weekend is a long weekend in Canada.  Matthew will be spending some time in respite and I will be spending the weekend hiking approximately 80km of the southern end of Bruce Trail.  Next weekend I will follow-up with another 70km of teeth gnashing hills a bit further north.  Don’t worry, I have the hot tub fired up in anticipation of the very sore legs I am sure to have at the end of all this.

Deciding to hike 894 kms might have been kind of silly when you consider my crazy life. And I may not be able to complete the goal of an End-to-End by my fiftieth.   But I plan to have fun trying and I will no doubt get a whole lot further than had I never bothered to challenge myself with a lofty goal.

Self care is not time wasted.

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My family and I had a fantastic long weekend in Toronto, but I returned home yesterday to a full day of busyness.  In addition to the normal stuff of life and caregiving, my husband wasn’t well and spent most of the day in bed, my youngest son had his spring  music concert, and my middle son had a celebratory gala with his colour guard.  Since I haven’t mastered the art of being in two places at one time I ended up at the spring concert while a caregiver attending Matthew’s colour guard gala.  It was a crazy busy day.

My days are sufficiently busy and my to do list is so very long that I have a hard time sitting still doing nothing. I can almost always think of about fifteen things to do at any one time.  Even my leisure time is consumed with relatively productive activities like sewing, walking the dog, or reading.   During those rare moments I watch TV there is a good chance you will find me folding laundry, ironing, or knitting. When I am not doing something I feel guilty.

Research tells us that extreme caregivers struggle with an almost chronic sense of burden. But when you live every day knowing that there will never be enough hours in the day to do what you need to do it can be hard to “turn off”.  For extreme caregivers it is further complicated by the fact that much on their to-do list is vitally necessary to ensure the health and well-being of another, often at a cost to themselves.

One of the first things every caregiver is told is to engage in self care.  I have already written about the fact that from a purely logistical standpoint this can be overwhelmingly challenging.  It is not as if I can decide that I won’t perform my son’s personal or medical care today because, you know, I need a break.  But the psychological side to the whole self-care challenge can be equally difficult.  When your life is a constant flurry of activities you MUST do to ensure your child’s survival and the general functioning of the family (like meals and clean clothes) it can be hard to give oneself permission to take a break.  Ever.  In the face of constant need-to-do’s it can be very difficult to create the necessary psychological space to stop.

Yesterday at about 4:3opm I briefly collapsed in a chair with a cup of tea and just sat there. I didn’t do a damn thing for about 20 minutes.  I kept thinking I should do something.  I should get up and get back to work.  I had yet to start dinner.  I had to feed people and leave for the spring concert shortly after dinner.  There was a house and  yard full of chores that needed to be done.  I was wasting time just sitting here with this cup of tea.

And then it dawned on me that this was self care.  Self care was more than sleeping for 8 hours, eating nutritious meals, and engaging in appropriate amounts of exercise.  Self care was more than another activity I needed to do before I could cross it off the to -do list.  Self-care was also creating the psychological space to do nothing.  Easier said than done by the way.

I know. I know.  It is so obvious how did I miss it?  But when your life is all about ‘doing-for’ all the time it can be very difficult to do nothing and believe that the doing nothing is actually doing something.  That these moments of seemingly doing nothing are not wasted time, but in fact a productive form self-care.

So if you are an extreme caregiver I would challenge you to try to find the time in your day to do nothing.  Even if it just for a moment.

 

 

 

Life Interrupted. Constantly.

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I started the above project in February.  One night while I was sewing Matthew decided to start screaming and not stop.  And then my kid proceeded to spend most of March in and out of the ICU at a hospital over an hour away.  And then I spent April following up with medical professionals and trying to get  back on track with life.  This sewing project has remained exactly as you see it for the better part of three months.

The project is a car themed pillowcase for a very young friend of mine.  I had hoped to have it completed in fairly short order.  For the record, I can sew a pillowcase in about ten minutes.   At the rate I am going the project might be finished in time for Christmas.  Or his university graduation.  My days seem sufficiently crazy right now that sitting down to sew seems impossible.  Perhaps during the summer months??

A few weeks ago I wrote about the fact that I would often put my coffee down, get caught up in caregiving, and not return to it until it was stone cold.  I am detecting a theme here.

Life with a medically fragile child is unpredictable and interruptions to life are common.  When the you know what hits the fan it isn’t as if one can say, “Hey Matthew, can you stop de-satting (when oxygen saturation levels drop dangerously) until I am done this pillowcase”.

My son’s care is pretty demanding on a day-to-day basis and his needs generally keep me hopping.  Medically fragile children, by definition, are unstable and that instability can translate into some pretty scary stuff.  Crises can hit at any time.  And with kids like Matthew it can be hard to determine when you might be able to return to what you were doing before the crisis. Frankly, I am often amazed I am able to get anything substantial done at all.

If I have learned anything along this journey of extreme caregiving it is that it is good to have plans.  It is good to keep living your life.  But hang on to those plans loosely and be prepared to renegotiate their terms regularly.  And sometimes you toss those plans out the window and make new plans.

It is Friday evening and Matthew has gone to the movies.  Perhaps I will go finish a pillowcase.

 

 

 

 

 

 

Making holidays work.

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Planning family holidays has always been a challenge with a medically fragile child.  Initially we would take Matthew with us, but as he grew older and become more complex that proved difficult.  Holidays with Matthew, while still possible, usually mean that his health and care needs dictate our entire holiday and that I return home exhausted and in need of a holiday.

But for a while we did it.  Matthew has camped Algonquin and we would hike his feeding pump out to a ranger station every night to have it re-charged.  Finally we reached the point where we accepted that Matthew would need to be admitted to a respite facility for many family holidays.  But even that can be challenging. First you need to book respite knowing many other families also want respite during peak times like school holidays and summer.  There are usually strict time limits on respite and guidelines around drop-off and pick-up times.  It doesn’t matter that your family holiday is seven days, you can only have five days of respite.  Or, it doesn’t matter that your plane gets in at 5pm, discharge time is 2pm.  I guess you need to fly home a day early.

And then even when you have respite booked it doesn’t always mean it happens.  Your kid can get sick.  Or kids at the respite facility get sick and respite is shut down.  One year our March break plans were thrown into total disarray because public health shut down our respite facility following a gastroenteritis outbreak.

These days Matthew is generally admitted to a respite facility if we want to get away.  But now that we have older kids we are finding we have a whole new set of challenges associated with family holidays.  Our eldest is in university while our youngest is in high school.  They have totally different holiday schedules.  Our eldest also now works up north as a camp counsellor for most of the summer.  Christmas is the only real stretch of time we could arrange a family holiday but that presents new problems.  First respite admissions tend to be difficult to obtain because it is a peak holiday time, and second respite staff themselves reasonably want some time off to spend time with their families. Throw into the mix that my kids prefer the classic Christmas at home with turkey, a tree, and family means we don’t travel at that time.

Enter the mini-hoiday.  Recently I told my husband that I wanted to do something as a family.  It was understood Matthew would be in respite – and, yes, that fracturing of the family bugs me but is a whole separate post.  We knew we could only come up with a long weekend before our eldest needed to head north so we spent some time brainstorming about what we could do. The location had to be within a day’s drive.   Our youngest is a theatre buff and wanted theatre.  Perhaps New York?  Our eldest is a sports guy and wanted major league sports.  New York could work, but how about Chicago?  Or Washington – they’re in the playoffs after all.

Guess where we’re going!!!  We’re heading a whole one hour down the road to Toronto.  But it works.  Everyone gets what he or she wants.  I get a long weekend with my kids and husband before they start dispersing for the summer.  We’ve got tickets to Kinky Boots for my youngest, and seats at the Jay’s game for my eldest.  If the Raptors go to game seven we’ll likely go watch the game on the big screen outside the Air Canada Centre.  We’ll ride to the top of the CN Tower where my eldest and I will cower in a corner since we’re afraid of heights while my youngest tap dances on the glass floor.  We’ll visit the aquarium and catch a movie.  We’ll eat out and sleep in.  I think we’ll have a blast.

As a family we have had to come up with some happy medium of including Matthew wherever we can, but also acknowledging that sometimes we need to be able to enjoy ourselves without the demands of his care.  We have also had to work within the fairly restrictive bounds of respite and life with a medically fragile kid.  I think we’ve done a decent job getting creative and making sure all of our kids have happy family memories.

I can’t wait for this weekend!

 

 

 

 

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