Why Fang remained asleep.

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I will start this post by admitting that of any of my blog posts, this is the one I hope finds its way into the hands of people and students (health professionals, educators, etc.) who work with parents caring for kids with disabilities.

In yesterday’s post I introduced readers to my inner, fiercely protective, mother bear who I refer to as Fang. Over the years there have been many situations where Fang has spent meetings, ER visits, hospital admissions, and so on, pacing her cage and snarling at the bars. She wasn’t allowed out of her cage, but boy did she want that.

During this most recent visit to the hospital – from ER, through the ICU, to discharge, Fang remained sleeping blissfully in her cage. I don’t think she even twitched.

For those of us raising a complicated kid there is a sense that the “system” is a callous, convoluted, and insensitive place. As a result a great deal of our time and energy can be consumed by advocating to people and agencies that don’t seem to hear, or appreciate, our concerns or our child’s needs. As a result, it can often feel like Fang is rattling at her cage demanding a voice in a world that struggles to hear our voices. There are times that I know I have found keeping her leashed a daunting challenge.

But yet Fang remained sleeping soundly during this most recent hospital admission and think it might be useful to explore why.

  • My knowledge and experience as Matthew’s mother was respected.

From the minute Matthew and I crossed the threshold of our regional children’s hospital the health professionals involved actively sought my input. My experience as Matthew’s mother and the knowledge I had gained over the years about Matthew’s medical issues was respected and actively integrated into the team’s conversations. I was included in team rounds. I was not seen as simply “mom”, but rather viewed as an expert and team member of equal standing when considering the care and medical management of Matthew. I was treated with respect, but also with compassion during the more difficult moments of the admission. In other words, the patriarchal medical model had been tossed out the window and replaced with something more empathetic and inclusive.

Research demonstrates that in the care of complex children including the parent as an equal and valued team member is crucial.  Unfortunately some agencies and institutions have yet to “get the memo”.  Such encounters are often challenging.

  • The team respected my personal limits and understood the ongoing challenges of providing extreme care.

Over the years I have had some experiences where professionals have overwhelmed me with expectations surrounding Matthew’s care needs without appreciating the sustainability of maintaining that level of care. Their expectations were unrealistic.  Health care providers sometimes have forgotten that parents do not leave at the end of a 12-hour shift and are not capable of caring 24/7 indefinitely – and that if they try it usually doesn’t end well. I have learned over the years that I need to be very clear about my personal boundaries while Matthew is in hospital, particularly regarding self-care. Simply put, while Matthew is in hospital, I need to sleep and eat. The ICU team fully supported my need to periodically leave Matthew to engage in self-care. The team also understood that upon leaving the hospital I would continue to provide extreme care and so leaving exhausted was not appropriate.

  • The team appreciated Matthew as a person rather than thinking of him as a diagnosis.

It often seems that many situations (medical, educational) view Matthew as his list of diagnoses. In acute medical situations I am okay with that.  There are moments that medical shorthand allows the team to isolate key issues and to make rapid decisions. That is good and important! However, what I love about this particular children’s hospital is that they view Matthew as a person, rather than a diagnosis, and seem genuinely interested in learning about him outside of his list of medical issues.  There are other situations that could learn from this approach.

  • The team was honest about their limits of understanding.

During this admission there were more than a few unknowns and the team was honest about the gaps in their knowledge. While it can be frustrating to be left with unanswered questions, I also find it refreshing when health care providers are honest about issues that confound them.  I often struggle to understand what might be happening with my complicated kid.  It is nice to know that I am not alone in my confusion.

 

I will note that as a parent I also have responsibilities for creating and nurturing the sort of positive working relationships that keep Fang sleeping.  But, I think that might be another post.

 

Who is Fang!

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Like most parents I have a fiercely protective Mother Bear who lives inside me.  Threaten my child and there will be hell to pay. Years ago I gave my inner Mother Bear a name, Fang.  For the most part I keep Fang on a very tight leash and well secured in her cage.  Wherever possible I believe in trying to work through issues and problems in a constructive, collaborative way which means that Fang is generally not allowed to be part of the conversation.  However, the “system” can be unyielding, and at times makes decisions that may not be in the best interest of my child.  During those moments Fang awakens and begins to rattle her cage.  Even then I am very careful about unlocking the cage and letting her out.  That whole choose your battles wisely, and solving problems with honey thing. Because once Fang is out of her cage a tsunami-like force has now entered the room and y’all might want to take cover.

I am very selective about releasing Fang with good reason.  Fang is one scary lady. If you meet Fang I can assure you that you will be intimidated.  Fang calls it like it is and generally knows her stuff. It can be hard to argue with Fang and she knows it. While she is allowed out only rarely, when it happens she can put a threatening party in his or her place in very short order. Heck, I am more than a little afraid of Fang myself.  As an aside, I actually find Fang episodes brutally stressful and often resent that I feel pushed to release her.

Fang is only truly allowed out of her cage if I believe there is no other solution and I am concerned about my child’s safety.  Like the time I told our local regional children’s hospital that Matthew wasn’t safe in a standard hospital bed and required ongoing supervision and/or a safety bed.  Since the children’s hospital didn’t have the appropriate safety  bed (for complex children – at a children’s regional hospital – go figure) the solution was going to have to be that Matthew was fully supervised.  I further reminded the team that I could NOT remain awake 24 hours a day continuously to provide that supervision.  I needed to sleep for at least a few hours in a 24 hour period if I was going to be able to continue to function.  The team said, “of course”, and told me point blank that they had lots of experience with kids “like Matthew” and could handle the situation while I slept.  The very next day, after I had left Matthew for about five hours during the night to sleep, a nurse had to tell me that they found Matthew on the floor next to the bed, tangled in IV lives, at about 3am.  I assure you the whole freaking team met Fang including some senior administrators.  I pointedly asked them whether it would take a major injury, death, or lawsuit to address the issue of safety in bed for complex children. I told them that I resented the fact that I had to be assertive and my son had to be found on the floor before they took the matter seriously.  It was helpful that as someone trained in occupational therapy I could cite all sorts of research about the risks for people with physical and intellectual disabilities in a standard hospital bed. Matthew has never been left unsupervised since.

A few years ago, as part of my graduate work, I was sitting in a class on spirituality and suffering and the professor projected the image above on the classroom screen.  This image is the Hindu mother goddess, Kali.   While I am not an expert on Hindu deities I learned that Kali is a fierce, don’t-mess-with-me diety who balances an inner purity and a quest for justice with some fierce homicidal tendencies. In other words, she’s my kind of gal.

After the professor shared the image with the class I snapped to attention and sat bolt upright in my chair.  Anything he said seemed to fade to the background for a few seconds.  All I could think was there she is.  There is Fang.  The image of Kali, for me, captured the essence of the take-no-prisoners fierce mother bear that lives inside of me.

I later asked a Hindu friend if it was inappropriate  in any way that I identified with this deity.  She thought it was fantastic that this image and legend spoke to me in such a powerful way.  As a result, Kali remains, for me, the image that I tend to connect with my inner Fang.

The national burden of stereotypes

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A couple of weeks ago I stumbled across an article in the Globe and Mail about Nico Montoya. Nico, along with his family, have been denied permanent residency in Canada because it is anticipated that Nico, a young teen with Down syndrome, could become an extraordinary burden to Canada and its citizens.  Extraordinary burden for Immigration Canada, of course, is defined exclusively by the anticipated financial cost to Canadian society. The fact that Immigration Canada has no real way of determining Nico’s potential abilities and contributions is apparently irrelevant. The fact that many people with disabilities, Down syndrome included, live full, productive, and employed lives has been ignored. Nico has been reduced to a diagnosis and a stereotype. His humanity and potential have been ignored and completely lost in the ensuing conversation. That is shameful. For Immigration Canada disability=burden. As a Canadian I am embarrassed. So very embarrassed.

Ultimately we know very little about Nico – his interests, abilities, and needs have not been shared with the greater community. We don’t know Nico the teenaged boy at all. But if we had the opportunity to meet Nico as a person and not a diagnosis then my guess is that we would probably learn pretty quickly that he is a lot like any other teenaged boy and has a similar future.  Nico may someday leave his family home, work, volunteer, make friends, develop hobbies, go to hockey games, celebrate milestones, form relationships, and so on. And you know what, Nico might need support as well. But last time I checked many of us do during our lives and we are not exclusively defined as a burden.  In other words, let’s be very careful about how we define who is “normal” and who has a “disability”.

We in Canada pride ourselves on being an inclusive and diverse society. However, if you are a member of a visible minority then that shiny image of tolerance and acceptance is often found to have cracks. As the parent of a child with profound disabilities I personally have found that disability continues to be a source of discrimination, exclusion, and rabid stereotypes on a frighteningly regular basis. People and communities who pride themselves on being enlightened, tolerant, and radically inclusive, can have blinders when it comes to seeing beyond disability and its corresponding stereotypes. My son is often not seen as human being but rather a list of medical diagnosis, and physical abilities (or lack thereof), with which assumptions and decisions about his life and participation in broader society are made. He is not Matthew, he has cerebral palsy, and that obviously means he cannot do stuff. His personhood is replaced by a diagnosis and everything about him is organized around that diagnosis and often faulty assumptions.

My son requires demanding care and people who know me know I am painfully honest about that fact. I resist caregiving narratives that gloss over the challenging reality of being a full-time caregiver because these stories do a disservice to those of us who care. But I also actively resist the notion that my son is simply a diagnosis or a societal burden. He is Matthew. He loves bubbles, cartoons, and music. He sings in a choir and is a member of a colour guard that has performed internationally (pictured above). He is an employer, friend, and son. He may not become a lawyer, butcher, baker, or candle-stick maker, but he is a vibrant member of his community and those who cannot see that may themselves be burdens to society by virtue of their lack of vision and creativity. Because in my view that colossal lack of vision limits us all.

Rick Mercer in his latest rant said “my Canada includes an extra-chromosome” and I wholeheartedly agree. I would extend that to say that my Canada includes people. All people. Full stop. Let’s stop defining people by what we visibly see, or by what we imagine based on stereotypes. Let’s stop defining citizens by their wheelchair, sexual orientation, hijab, colour of skin, whatever, and simply see diverse people – valuable members of Canadian society who bring forth a unique collection of contributions.  It is very limiting to live in a society where we are all forced to fit the mold of the dominant, able-bodied culture – this lack of imagination is our collective disability.  Rather, I would suggest we want a society filled with vibrant, exciting, inspiring diversity.  Because with diversity we are reminded of the vast range of human potential and that will never be a burden.

 

 

We’re back

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I did NOT think my son’s visit to the ER would result in an admission to hospital.  I decided to take my son to the ER last week since I was concerned about some GI issues that are both common and troubling for kids with his collection of conditions.   Not only was Matthew admitted to the hospital, he ended up critically ill in the ICU.   And, it wasn’t his gut that was the problem, it was his breathing in the end.  As in he wasn’t doing a particularly  good job of breathing on his own and needed a lot of help for a while.  Fortunately he recovered quickly and he’s (we’re!) home to follow-up with his community based health care team.

This precipitous decline is common for kids who are considered medically fragile.  In fact, it is a defining point for medically fragile children.  Children (and adults) who are considered medically fragile are prone to rapid changes in health that can be life threatening.  One research article I have read compared caring for someone who is medically fragile to living with a time bomb.  You have no idea when the bomb will detonate or how bad the blast will be.  You only know that someday something will happen and it will likely land your child in hospital.  It could even end their life.  It is a very anxiety provoking way to live and parents who care for medically fragile children have had their stress levels compared to combat soldiers.   Symptoms associated with post traumatic stress disorder are not unusual for parents.  The first night after leaving the ICU I kept startling awake convinced that some alarm was sounding and that Matthew was in distress.  Not only were there no alarms, but Matthew was sleeping peacefully in his room with a night nurse standing by his bedside keeping a close eye on him.

My son has been so medically stable for so long that last week took me, and most who care for Matthew, by surprise.  In fact I will admit that my confidence in my ability to “read” Matthew is more than a little shaken after the last week.  Over the years I have come to believe that I am one of the most reliable sources for interpreting Matthew’s presentation and apparent symptoms.  As his mother I am the most deeply connected to him.  And boy, did I misread last week.  Now to be fair, the experts in the both the ER and ICU also had a really hard time sorting out what was going on as well.  And, I take comfort in the fact that I knew to get Matthew to the hospital when I did.  He clearly needed to be there.

Spending time in the ICU borders on living in a sensory deprivation chamber.  It is a weird experience of living in limbo – disconnected from the people, places, and routines that define one’s day and give a life meaning.  You are in an unfamiliar place with its own very specific rules.  It is sterile.  Literally.  Time becomes meaningless and is measured by shift changes, and changes in health status.  I define a day as “the day Matthew was able to come off oxygen”, not a thursday in March.  It can be a very disorienting time even absent the fact that you are on an emotional roller coaster of worry about your child.

I always find returning home after a hospital admission incredibly liberating.  After spending days in a de-facto sensory deprivation chamber where engaging in even the most basic self care, like sleeping and eating, is incredibly challenging coming home seems like a vacation.  I always find this amazing because as an extreme caregiver so often my home can feel prison-like.  There are days that I have become resentful that I could not go out for a walk, meet friends, or attend a social event. But after a hospital admission even the most simple pleasure like a cup of tea takes on new significance.  Heck, the fact that I can do laundry seems exciting.

How full is your cup?

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This will be a quick post as I am heading off to the emergency room of our regional children’s hospital shortly.  My son continues to have a rough go of things and we have some medical concerns that now need attention.  Over the years we have learned the ER tends to be the place where such questions are best addressed.

Thankfully, I haven’t made this trip in years.  Matthew has been largely stable.  But, there was a time when I made this trip several times a month.  One of my coping strategies was to treat myself to a drive-thru Starbucks latte en route to the ER.  Normally I am not prepared to spend $5 on a cup of coffee.  That, and the fact that I prefer a specific fair trade coffee usually meant that I brewed my morning cuppa at home.  But during ER trips that decadent latte became a bright moment of self-care and self-indugence in an otherwise stressful day.

Today, once again, I will stop and treat myself to a latte.  In fact, I might even splurge on a slice of lemon loaf, calories and fat be damned!  My  husband laughs at these pollyanna-ish moments, but for me these “traditions” allow me to find my cup more full, than empty, during difficult moments.

So, on a day when my cup is likely going to feel emptier than usual I will fill it with some damn good coffee.

Shared pain

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Today I had great plans. I was going to write a post about Jean Vanier and then spend the morning volunteering with a local not-for-profit. Neither of these things happened. Sadly my son had other plans. As I sit down to write this post it is 1:30 in the afternoon and I have only just been able to safely transfer my son to his wheelchair.

You see, when my son is in pain he becomes irritable and disorganized. He thrashes around, and since he weighs about 120lbs he can pack a punch. So much so that it is impossible to provide care when he is like this, and he has been like this more and more lately. During these times it is difficult to change his brief, connect his feeding tube, change his clothing, or to safely transfer him to his wheelchair. During these moments I primarily supervise him in the safety of his bed to ensure he doesn’t injure himself too badly. I say too badly because he inflicts minor injuries. He scratches his face, bites his arms, and bites his lips and tongue. I usually have to change the bed linen and clean the bed rails of streaked blood. (Sorry, about being graphic, but this blog is also about making the invisible challenges and pain of caregiving visible.)

This morning it was worse than I have ever seen and I have seen a fair bit. We’re not sure if this is related to puberty, rapid teenaged growth, or some internal pain. It sucks. We have a call in to his most responsible physician and are hoping to sort out some sort of pain management strategy. To say it was a morning from hell just doesn’t seem to capture the last few hours.

There is a substantial body of research that suggests that children’s pain is often poorly managed. Pain cannot be objectively measured like heart rate, or temperature, and is a highly subjective experience. Physicians, according to both research and my own personal experience, struggle to treat something they don’t well understand, particularly when they have concerns about the reliability of the reporting source. We know this is particularly true for non-verbal children with significant intellectual impairments like my son. This population tends to have pain that is poorly managed largely because it is poorly understood.

I have had physicians tell me point blank that they will not treat my son’s very obvious pain until they understand the source. I understand their need to locate any underlying medical concerns, but their inability to rapidly identify my son’s pain should not translate to his suffering.  They really don’t like it when I point that out as they seem to think I am isolating a failing on their part rather than simply advocating for pain relief for my son.

Add to this the fact that my son’s body is very different from what is seen in medicine as the “normal” body and isolating pain can be challenging. My son has deformities related to his disabilities that can lead to pain. He has highly disordered muscle tone that can cause pain, particularly during the rapid growth of the teenaged years. The upshot of all this is that his pain, while very real, may be difficult to locate on an MRI, CAT scan, x-ray, and so on. And in the absence of these findings it means his pain is often untreated, or very poorly treated, by medical professionals.

What I find particularly fascinating is that physicians, while paying lip service to the value of a parent’s expertise about their complex child, often are hesitant to accept a parent’s interpretation of their child’s experiences, pain being one. I am my son’s primary advocate and a key source of interpretation of his experiences. As his primary caregiver who has journeyed with him for 17 years I can read him well. In fact I would argue there is a porousness to our respective bodies that allows me to become his voice when reporting symptoms. At some level physicians seem to accept this. For example, I have had a physician offer my son pain relief to address what he perceived as my discomfort with my son’s behavior. How it was lost that my son’s behavior might have been an expression of pain is beyond me. But it seemed that if the report of pain did not directly come from my (non-verbal) son it could not be trusted. Interestingly, by treating me via my son this physician implicitly communicated that there was a strong symbiotic relationship between the two of us, and that I understood and experienced my son’s pain in some clear way.

The medical model still struggles with this idea of the enmeshment of bodies. Or at least it seems to when played out in many physician’s offices. In science, bodies are seen as discrete entities despite emerging discussion of our intercorporeality – our deep bodily connection.

While I think this offers great promise for future research, today I simply hope that my son’s physician will hear my concern and will propose a plan to address my son’s very real pain.

Feeding a caregiver: Body and soul.

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People, and groups of people such as faith communities, often ask how they can help an extreme caregiver.   For many extreme caregivers simple tasks most of us take for granted, like showering, sleeping, and preparing and eating healthy meals, can range from difficult to downright impossible. When you cannot leave your child unsupervised for a moment cooking dinner can become a burdensome task. Many concerned communities cannot provide medically complex care, but preparing tasty and nutritious meals for an extreme caregiver is a tangible, immediate, and practical form of assistance that a concerned community can easily offer.

In my experience communities are often amazing at this form of support during a public crisis. When my son was in the NICU we had to discreetly ask our church to STOP dropping off food because we had run out of both fridge and freezer space. Unfortunately once the public event has passed many communities forget that extreme caregivers may quietly live lives bordering on the brink of personal crisis for years. Yes, years. And remember it is when the family member leaves the hospital and returns home that the caregiver is back on duty, often without significant support, and often in isolation. Ongoing assistance, such as meal provision, provides a clear message that a caring community is committed to journeying with, and supporting, a caregiver for the long haul.  In short, meals feed more than just the body.

This past week I was invited to support a local caregiving family and in the process learned of a helpful and free app – http://www.mealtrain.com.  Mealtrain allows communities to organize meal delivery, or other forms of instrumental support, for an individual or family who might appreciate support. Food preferences, allergies, family details, and an appropriate delivery address and time are all noted. The details are shared only among invited community members so the privacy of the caregiving family can be protected. A posted schedule of meals ensures that the recipient family doesn’t receive a week’s worth of lasagna! There is even a helpful section that covers basic etiquette for meal delivery, like reminding meal providers that the recipients may not be in position to entertain guests and meals should be dropped off with little fanfare.

I thought the app was brilliant! As a friend who wanted to help I was able to quickly find a vacant date and arrange to drop off a meal that I know will be suitable.