Doctor, can you hear me?

To coin one of my oft-used phrases — ‘we’re going to have a sharing moment!’

I live with spastic diplegic cerebral palsy and several years ago  an episode of chest pain required that I go to the ER at the city hospital, 40 minutes away. I’m not a ‘frequent flyer’ in the ER so for me to make the decision to go is not without a lot of thought. Do I really, really need to?

Earlier that day while at the mall, I was having difficulty wheeling up a ramp which normally was not a problem given my powerful upper body. I was worried because my heart was hurting. My family doctor at the time made house calls and while attending me at my home, after the mall outing, put me on his portable heart monitor. He was concerned enough after the exam to insist that I go to the hospital immediately though there was no need for ambulance transport.

I went to the hospital ER, outlining symptoms in detail, noting that my family doctor felt that  I experienced a mild ‘cardiac event’ based on his exam. I didn’t have a long wait, thankfully. Given my status as an ‘at risk’ patient, I also have a need to be really proactive when it comes to avoiding too much contact with germs - colds and flu. For me, a simple cold could develop into pneumonia.

The ER doctor arrived and I took note of the fact that I wasn’t invited to get out of my chair to lie on the exam table. As was my habit, I wheeled around the space, mentally photographing the environment - part of my modus operandi in the event that I did have to stand up and make my way to the exam table. I prefer to move under my own power as being ‘manhandled’ had potential to cause me to totter/balance shift; then I have to  ’re-balance’. A fall at my advanced age poses even greater risk, given I am a senior citizen with a since-birth brain insult but still uprightly mobile - quite an accomplishment. I wasn’t about to jeopardize my health and wellness any further by landing on my bum and possibly breaking or dislocating a limb. It’s important for clinical staff, whether nurse or doctor, to ASK if a patient with obvious mobility disorder who IS able to walk, would like or requires assistance.  To not ask and simply latch onto a patient without regard for their personal safety is inappropriate as their personal boundaries were not respected.

I also noted another ‘problem’ with the ER doctor’s protocols. She did not wash her hands. I had observed her munching on a slice of pizza just moments before she came to see me but said nothing. I was asked about the reason for my visit while the doctor, rarely  making eye contact, looked at the chart. She then asked why I was in the wheelchair and was informed about the spastic diplegic cerebral palsy status. Much to my shock, she asked what CP is. Confidence in this physician went right out the window, barrelling down the highway. 

The doctor put the chart down, bent over and leaned into me and with her thumb pushed on my stomach. There was no blood pressure taken, no temperature taken, no questions about chest/heart pain asked, no questions about what I ate that day. Red flag! Red flag! Red flag! Red Flag! In just seconds, the diagnosis - indigestion. She wrote a script for Propulsid, and with that, the  examination had concluded.

  For the record, I’ve never had indigestion in my life. I would be remiss, however, if I didn’t point out that in many patients, heartburn and indigestion can and do mimic  the symptoms of a heart attack and all avenues must be explored. 

I accepted the script and bid the doctor good day, wheeling away without a backward glance. There was NO WAY I’d be getting that script filled. Once at home, I researched the drug and was stunned to learn that it had potential to cause fatal arrhythmia. It was finally taken off the US market in 2000. I had a conversation with my father, a old-school country doctor, and within days was examined by a cardiac internist in Fredericton. More tests followed, and I was subsequently diagnosed with aortic insufficiency. It was possible that I had I taken the drug as prescribed by that ER doc, I’d have gotten into serious difficulty, compromising the ‘golden hour’ of care lost because of my proximity to the hospital would have most assuredly worked against me.

My point in sharing this story is to make people aware that when they really, really know something is not right with their body, they need to assert themselves when they decide to go to the ER to seek treatment and appropriate care. And to the doctors - you  REALLY need to pay attention not to just what YOU see and hear from the body you examine, but what the patient is telling you. Hearing and listening are vital to outcomes. Let those two critical skills be your gifts to your patients this holiday season and all year round.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Failure to thrive

        A label by definition is “a short word or phrase descriptive of a person, group, intellectual movement, etc.”

Instructive labels: wash in cold water; this side up; do not remove tag; descriptive labels: she’s got really long hair, blue eyes, and well manicured hands; he’s always chewing on a fake cigarette and he smells of lemons.

Within the first year of my birth, I was labelled/diagnosed with spastic diplegic cerebral palsy and failure to thrive. In brief, cerebral palsy of the type with which I live is a fixed neurological condition.

Failure to thrive is often found in infants diagnosed with cerebral palsy, no matter the type and it implies an inability to gain and sustain weight or grow to expected height. I am still labeled failure to thrive. 

I also see failure to thrive in another way - a way that has nothing to do with physical growth patterns. I believe that many of today’s children, and dare I say quite a few adults experience a failure to thrive because of psycho-social or socio-economic circumstance. As a consequence they are very often penalized with inappropriate and totally unacceptable labels. This is a particular problem during the formative years, with the grade school student.

Some students may not have all the ‘best’ stuff, designer this and designer that and as a consequence be perceived as having less value, or even no value as a ‘friend’ or a team mate or dating material. 

Through no fault of their own, those ‘have not’ students are unwittingly set on a path of persecution and denial of inclusion because of preconceived notions about them and their ‘status’ which sets the stage for the currently popular coping mechanism - bullying. The ‘popular kid’ bullies out of a misguided sense of entitlement borne out of a self-importance that was designed in the home in which he lives and learns. Often, they feel they are ‘above’ their classmates because they have nicer clothes, designer sports gear, new car, and on and on. To be fair and to be real, this is not true for all such children of ‘privilege’. Children of ‘lower’ socio-economic status bully out of the sheer frustration of ‘not having’.

Upon closer examination, the common ‘I’m  better than you’ mindset has been unwittingly reinforced by parents whose socio-economic position and successes finances their child’s ‘status’. Giving in to their child’s every whim has advanced a ‘failure to thrive’ in that young person. Make no mistake, that is not something parents want to hear. Sadly, some parents equate giving their children ‘stuff’ on par with ‘effective/good parenting’. Their child has failed to thrive in ‘selling’ himself based on what he knows, how he behaves, what he thinks about and what is important to him outside the tangibles; the electronics, the things that money buys. Again, this is not the case for all such children.

  In this age of instant gratification, lost is the art of conversation and written communication that people of my era learned and still utilize as much today as in decades past; it is not such a strong skill in young people. Our current literacy rates speak to a huge problem. 

There is help! Parents must commit to saying NO to technology at evening meal, if meals are a shared family time. Engaging in meaningful, non-combative conversation is a confidence builder when opinions of youngsters are acknowledged/heard/respected/valued. Those ‘quality time’ experiences are easily transitioned outside the home into other interactions.

Teachers can help children of all ages overcome failure to thrive by discarding that long-held practice of judging a book by its cover. Many will admit they tend to treat the better dressed, more language-capable student with higher regard, thus pushing those who need more time and attention to the back burner. Teachers have attached a label without benefit of knowing the full history of the child, and if not handled appropriately, a ‘wrongly’ labelled child will become a self-fulfilling prophecy and act on how he’s treated. 

Ultimately the label that will be the most important tells us to ‘handle with C.A.R.E’

C.A.R.E. — COMPASSION, ACCEPTANCE, RESPECT, ENCOURAGEMENT.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

All in good time

Parents raising children with impediment to mobility, such as cerebral palsy is, are often impatient to see anticipated/hoped for positive results of various hospital treatments, surgical interventions, therapies like physical, occupational, speech, behaviour modification, and so on. Unfortunately, Mom and Dad don’t always get what they want; that’s how life is --  and how it must be.  Part of being a parent of a ‘special needs’ child is the need to hold on to the belief that ‘someday’ their child will do this or do that. Unfortunately, some parents never do get what they want. What they have to learn, with time, is that they didn’t fail their child; no one did.  What will be learned is that they will teach their child, just as their child will teach them.

Life has a certain rhythm that must be respected; that of a child with challenges has a totally different cadence to which parents must become attuned. It takes time for the child to grow and for the fruits of his labour to be realized; labour in the form of pressing on, often with adults in his life doing painful things to his body. For what? For a few years of crawling, stepping, standing, walking? In some cases, sadly, there will be no labour, as the child may be too neurologically involved/insulted to actively participate in any form of therapy. The labour will come, however, from parents; Mom and Dad, caregivers, or others within the family dynamic, as they meet the needs of the child – feeding, bathing, exercising, lifting, carrying, stimulating. It’s done willingly as that’s what parents do, but ultimately they pay in ways they never imagined. Stresses to the physical body; chronic back pain, sore arms, neck pain, lack of sleep, depression. Also suffering are their interpersonal relationships – loss of the companionship of  friends with whom they previously had frequent interactions. Some friends simply drift away – fear pushes them away, when they should be drawing closer to share and to learn about that which they’re afraid of. Other friends may feel embarrassed because they have strong, healthy children. Those attitudes are harmful to both the new parent of a child with disabilities and also to the entire circle of friends and family that surround them. With regard to Mom and Dad, their care giving to the one also impinges upon the health and wellness of others – to each other, to sons and to daughters; impinges upon the totality of the family dynamic. Caring for the one takes time away from the very necessary nurturing of the spousal or partner relationship; takes time away from exploring relaxation pursuits for oneself, even with something as simple as going for a walk, or strolling around the mall window shopping. Often the mother of a neurologically compromised child is tethers herself to him, not so much because she has to be but because she often convinces herself that she’s the only one who can take ‘the best’ care of him Such an attitude is often to her detriment, and to the detriment of  the rest of the family that needs and wants her time and attention.

  Sometimes, a neurologically insulted child may live for a year, for two years, for 10, for 20. Other times, the child grows into adulthood, living to 30, to 40, to 50, hopefully still having parents, or a parent, siblings, or a sibling – or some trusted friend to share the load; to provide assistance with daily tasks when they are no longer able to ‘keep up’. With advances in modern medicine, and to large extent the type of cerebral palsy involved, an individual with challenges to mobility can exceed expectations with regard to longevity, living to 60, to 70 – even to 100 years of age! Yes, 100 years old!

From his earliest weeks and months, a child with disorders to mobility needs constant monitoring, regular hands-on involvement, provided by parents and others in the family. Sometimes, outside interventions are called upon in the form of consultations with various clinicians in several disciplines, and it’s always helpful if they work together,so that, all in good time, the child will be better equipped to meet certain age-appropriate milestones, even if reached a few months or a year or two later than peers. Not all children will develop at the same pace nor with the same vigor to push on, push through the pain of having all that stretching and pulling of limbs and countless hours of speech therapy – oooooooooooo’ing and aaaaaaaaaaaaaah’ing and occupational therapy, learning how to hold a crayon and color within the lines, learning how to hold a spoon, bringing it from bowl to mouth in a fluid motion. All in good time, things start falling into place. I was fortunate in that my limitations, such as they were and are, were confined only to my legs and to the mechanisms involved in walking; stepping, putting one foot in front of the other in a well-orchestrated rhythm that ensured I would get from Point A to Point B without landing flat on my face. I didn’t require speech therapy, or chewing/swallowing/feeding therapy. To say that I was an am fortunate is an understatement when I see so many around me who didn’t fare as well as I. 

All in good time, parents, just as mine did, develop a routine that includes all family members, as they are able to participate. Key in formulating a routine that works for the family is not to turn siblings into mini adults, essentially thrusting them into roles for which they are ill-equipped. Siblings must be just that – brothers and sisters. As such, in their intended roles, they learn what their sibling with a disabling condition is capable of doing and not capable of doing. Their involvements and interactions don’t have to be constantly policed by parents – over-protection stifles all. I have fond recollections of the inclusiveness I experienced with my own brothers and sisters and I got to experience a range of activities that were fun, but sometimes scary; I can look back and remember and appreciate that at least I got to try new things, if sometimes only once.

Brothers and sisters, whether younger or older, develop an awareness that includes protective mechanisms; they’d not knowingly engage their sibling in an activity that would pose risk. In large measure, their desire is to make their sibling with limitations feel a part of the play; to experience what they experience. If it’s not meant to work out, it won’t. They’ll simply move on to something else. Parents must not interfere too much with those developing relationships, as those connections will often outlive parents, which is part of the cycle of life. Depending upon the overall health of the neurologically impacted child, it can be expected that quality of life will be maintained and enhanced with good nutrition and a well rounded social connection outside the home. To be confined within 4 walls, whether they be the home or a classroom is a very narrow life, to say the least, and physical health is very often impacted by social isolation or lack of connection. The more the life affirming and life challenging experiences, the better.

All in good time, as the youngster grows into a teenager, then into adulthood, hopefully gainfully employed and independent, a host of experiences will be realized. Life experiences and life lessons need not be rushed;  there is no race to a finish line. Parents, who from the outset were anxious to see the benefits of therapies that would ensure their child could live in the world with a certain degree of freedom and access are often wishing they could turn back the clock. That’s the same sentiment shared by parents of able-bodied children. What a gift it is to have the experience, as parents, of guiding a child with limitations to participation along with a child with no such deficiencies.  It allows parents to see first hand just what is possible and what they as Moms and Dads are made of as human beings, and what all their children are made of and what they have potential to become.

All in good time, I have learned to do a great many things that did not involve walking or moving. I suppose at the stage when I am no longer walking a lot, or at all, activities and hobbies learned in childhood will be what sustains me during those periods when I don’t have the energy or the inclination to be around a lot of people. Sometimes, more as I age, I find the busy-ness of people exhausting. I suspect that as I get older, paying attention to auditory and visual cues as I move about will become more tedious as age diminishes and degrades those two faculties. For safety I may find the use of a wheelchair necessary. Time will tell.

Ultimately, we realize that we aren’t so different from each other after all and whether we have more or less really doesn’t matter. What does matter, regardless of limitations to full participation, is that we use those skills and talents that we do possess to their fullest, for to waste them does a disservice to everyone around us, most especially to ourselves. In the final analysis, to coin an oft-used phrase, who and what we will become will reveal itself – all in good time! ☺

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

Attitude Adjustments

It’s a boy! It’s a girl! Twins!!  Each with 10 fingers and 10 toes and peach fuzz blondish hair for both.  The girl is examined and all seems to be well; rosy cheeks, a hint of a smile on the lips. She’s sleeping, with arms outstretched, legs outstretched. Her brother is restless, crying. Wait a minute --- something’s not right. In fact, something’s terribly wrong! The legs seem twisted on the boy, his toes curled;  his fists are clenched and won’t release. What is going on? 

The ‘perfect little family’, a boy and a girl arriving as a 2 for 1, with the months leading up to ‘the day’ being unremarkable in that there had been no identifiable problems. How could life be so cruel? Or was it? Let’s stop and take stock. The most important thing is being overlooked --- both babies are ALIVE. They are here and now! How is that cruel? After examination and consultation, it was determined that the boy may have cerebral palsy. Passing hours and days would reveal more.

Life is about to take two new parents and two brand new lives on an amazing journey to explore feelings that the Mom and Dad never knew that had – until now!

What’s going to be added to the mix, not just for  these new parents, but for every single person involved in the lives of these little persons they created is something no one expected - an attitude adjustment. 

I’ve come across many families where there are twins with one having  cerebral palsy, sometimes very mild and such that it won’t significantly impact the child’s daily living and learning. In other case, however, the implications of cerebral palsy are profound and life altering for both the child and for ALL those around him. As with many deficiencies to ambulation, how we alter the landscape at home and at school often determines how well a child will adapt. Coddling is not an option. Just say NO to the C word and you won’t have to deal with that B word! This is especially critical when the child goes to school, whether the informal infant school or kindergarten. The importance of grade one preparedness cannot be stressed enough. Twins will make life interesting! 

How we perceive others is often borne out of how we conduct our own lives and our tendency to have certain expectations of those around us, those we draw into our circle based on how well suited they are to US. What is called for when parenting or interacting with children who have ‘special’ or ‘different’ needs is how we must adjust OUR attitudes about them, about their circumstance and about how they will respond to the challenges of living in a world that will never fully ‘fit’ them and what we can do to smooth the path.  As parents relinquish parts of their ‘job’ to others, namely teachers, educators must fully embrace the notion of nurture and nature. It may take some time to get a sense of a child’s strengths so it’s critical not to focus a lot of time and energy on deficits.

It’s been said that I’m in a rather unique position when it comes to speaking of issues surrounding cerebral palsy; that is true as I’ve had over 60 years of practice and am still at it. Each day has a different set of challenges for me as I age, and the same will be true for ‘challenged’ children growing up in today’s world. Even with advances in modern technology and a range of teaching and learning tools, the emotional impact of parenting a child with disability is universal. It hurts the heart! The emotional impact on the child living in and with the disability is such that those on the outside often misinterpret behaviours, triggers, ‘signs’.  This is especially true for teachers and others involved in interactions with the child outside the home.

My message to teachers is - don’t assume anything. What you see in terms of a particular behaviour or a sequence of behaviours of the child who lacks expressive language is often misleading and misconstrued as ‘bad behaviour’ or ‘brattiness’. Look closer! The non-verbal child, especially, is beyond frustrated at not being able to articulate wants and needs. Intellectually intact children with mobility disorders have challenges that may impinge not only on learning but peer interactions, so it’s necessary to pay attention to those ‘hidden’ messages their behaviour may be communicating.

For myself, when I was actively involved in training and educating children of various ages, I was then as I am now, an advocate of the buddy system — pairing an ‘able’-bodied child with he who requires a hand up. Parents must allow themselves to simply step aside and watch the youthful relationships develop and see where living and learning takes their little ones. Teaching and learning is for life!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

The Journey Continues: More Miles To Come

 In some cultures, persons with disabilities were held up as god-like entities, living with the comfort and care of their own family until the end of their days.  While still in university, engaged in one of many dining table conversations, I was told that in Aboriginal Indian culture, as example, an infant born with disability was tested;  left overnight in the woods unattended. If the infant survived, he was brought back into the tribe and treated as a King of sorts, to be revered. Everything was done to ensure quality of life from that day forward. 

 I grew up in a home with many creature comforts and it was and is never lost on me how very fortunate I was and am. Though spastic diplegic cerebral palsy did not compromise my intellect, it did affect how I move. I grew up before inclusion was the norm, particularly in the school system. I simply attended school because all the other children did. 

This is a critical lesson that must be learned by parents raising a child with disability who may have difficulty being accepted outside the security of the family bubble. Parents need to accept that they are not perfect and that their child is not perfect. With time and its life lessons, parent and child will blend together and work almost seamlessly as they travel  the maze-filled path of  life, however long. Days, months or years, with the profoundly neurologically disabled child are gifts not givens.

Early on, parents of a child with disability have to accept that their child’s ‘uniqueness’ will be a curiosity to others, even those within the family dynamic. As a parent, you cannot make other children like your child with challenges; that liking has to come naturally and from a place within the able-bodied child that allows him to choose freely to like or not like, no matter the reason. The assumption cannot always be made that a child with disability is not liked, not included, not noticed because he lives with disability. It may be possible, if his disabling condition is mild/barely discernible, that he’s simply not an easy child to like, regardless of a ‘special circumstance’.  There is nothing worse than a spoiled child, particularly if they grow into teenagers, young adults, and older adults, posturing with the same sense of entitlement they had as children; a sense of entitlement that may have unwittingly been fostered by parents who over-indulged. We do, indeed, reap what we sow -- it is critical, then, that the child with disability not be excused simply because he has certain limitations. That does him a disservice and it does those around him a disservice because they always have to be on guard. If a child is to be accepted, he must learn that the world at large does not revolve around him because he is differently able. Parents of such a child must accept that as well so that they can parent effectively; after all, parents aren’t going to always be available for guidance once the child establishes independence.

Over the past several years I’ve participated in various health/wellness/disability/aging with disability related groups on the internet and it always saddens me when I’d read messages from parents who report that their own parents and other family members were not accepting of a child with a since-birth disability – grandparents and other family members avoided spending time with the neurologically challenged child, excluding that child from outings with siblings, or if included, apologizing to strangers for the child’s ‘problems’. Perhaps their reaction/response to their ‘special needs’ grandchild is a function of the time in which they grew up and during that period when they parented their own children. Can they really be faulted? I don’t think so. They can, however, be educated – guided to think in a different way, a more positive, life-affirming way.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Accepting and celebrating ourselves

And what I assume you shall assume. 

[Walt Whitman Ib. Song of Myself, 1]

As one who lives with disability, accepting myself, warts and all was immediate, there was no choice – to coin the title of a currently popular song – I was  “Born This Way”. As well, I felt fully accepted growing up with my parents and 7 siblings; they had no choice either – we were all going to experience my ‘different’ness together.  Through my years as a counsellor and a writer, I have met many persons with disability of my era and beyond, all having expressed the same sentiment – for the most part, familial acceptance was a given, though some relatives struggled, also a given. It was the learning to celebrate ourselves beyond the family that was the challenge. Some thrived while others did not, as the demons of self-doubt and sometimes self-loathing grabbed them and took them under. A sad reality of living in a world where perceived perfection is the ‘prize’ of acceptance.

Accepting ourselves is often the first choice we must make if we are to grow --- healthy and happy and strong.  As infants, those of us with since birth disabling conditions knew nothing else, so we had nothing to compare to with regard to how our differentness/differences would be viewed by those who do not possess or live with those differences. As our awareness of ourselves develops so, too, does our awareness of how others perceive us --- good, bad, or indifferent. Not unlike how able-bodied people are perceived as they grow and move beyond the family to the larger community to take their place. 

We must not make the mistake of having our disability mean more to us than our other more valuable traits should mean. Parents need to let go of the Madison Avenue driven notion of ‘perfection’ and, along with their child with disability, venture out into the world not necessarily armed to do battle but to take their place and show that ‘can do’ will define life and living. The ‘can do’ might take longer and might be out of the ordinary in terms of execution, but it is no less important than any accomplishment of an able-bodied person. 

It is most assuredly not a given that a person with disability, whether born with it or acquiring it later in life, will always be accepting of their lot in life. To say I never minded or was never bothered by being born with a disability would be a grotesque lie. Certainly, as with any toddler, I wasn’t terribly aware of the concept of ‘acceptance, as I lived within the safe cocoon of the family dynamic. Crawling or stepping outside the safety sphere that included  mother, father, brothers and sisters paved the way to acceptance by those who would be come playmates, schoolmates, friends, boyfriends, and a husband. I can say, however, that my acceptance grew as my life experiences expanded so that I was able to appreciate that wobbly, scrawny, weakened legs would not be what defined the substance of me, as a person, as a woman.

My faltering steps to acceptance were due in large measure to how I perceived myself in relation to able-bodied peers; to be clear, I was never blatantly excluded as a youngster, but at times, I didn’t feel particularly ‘in’cluded, and my apprehensions were magnified once I became a teenager when how we looked mattered; as shallow as that may seem, that’s the reality of the teenager.  Appearance was everything to the teenage girl – or so we girls thought. Teenage angst aside, in my choosing to forever and always accept the body, the shell that housed the stuff of me, others were more at ease accepting me --- a choice they freely made unconstrained by the opinions and attitudes of their elders – in accepting me, they accepted their own flaws. 

In Western culture, elders being obviously of a  different time held the view that people ‘like them’ (me) were to be pitied, or shut away from view – institutionalized, and often not living beyond the age of five years. In days gone by, it wasn’t uncommon to ‘warehouse’ people with the type of neurological impairment (hate that word) I have; very often in State run mental hospitals where care and contact was minimal at best. . What killed the institutionalised child was not a progression of condition, since cerebral palsy is not a disease, but the lack of socialization -- isolation/deprivation of human contact does, indeed, kill. A broken spirit becomes a deadened spirit. In not invigorating the spirit, the mind, the body and the soul, life becomes untenable. Even the profoundly disabled can be stimulated in one way or another. Ask any parent who raises such a child and they will be quick to tell you that though their child may not hear, may not see, may not seem to comprehend, on some primitive level, even the most intellectually ‘damaged’ person has an awareness. Therein lies the major lesson for everyone – celebrate and accept the life that is, not the life that parents thought their child was supposed to have or hoped their child would have. To paraphrase Popeye – ‘I is what I is!’ 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Deciding on death

Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever [Elisabeth Kubler-Ross]

On 6 February 2015 the landscape of life and living forever changed in Canada with the Supreme Court’s unanimous decision on assisted suicide, whereby doctors may lawfully help competent adults, who are grievously ill and effectively if not ‘actively’ dying, to end their lives. What does this legislation mean for and to since-birth children and adults who are in the care and custody of parents who fully believe, in good conscience, that their loved one would ‘want this’; this being a peaceful/gentle death? Will the Supreme Court’s decision unwittingly open a Pandora’s Box?

I’ll never enter into a full-blown debate on euthanasia or assisted suicide not because I live with disability and the thought of someone else determining my ‘value’ and my life’s  ‘quality’ is abhorrent to me, but because I firmly believe that no matter how profound the deficiencies to the physical body, there is still something ‘in there’ that drives it. With that, exists LIFE.

16x9, a program on Global Television here in Canada, delivering in a documentary format, presented on  8 March 2012,  an episode entitled Taking Mercy. It explored the murky depths of the right to die/euthanasia debate, featuring two cases; first, that of Annette Corriveau, the mother of Janet and Jeffrey who have lived the past few decades in a care facility as their bodies and minds are ravaged by a deterioration caused by the genetic disorder, Sanfilippo Syndrome – there is no cure and there is no treatment.

The second was that of Robert Latimer, who, convicted of murdering his daughter, Tracy, served 10 years in prison for that crime; in my view, a crime against humanity.  The medical profiles of the Corriveau children, now adults because they are still alive, are vastly different than that of Tracy Latimer. We’ll never know what ‘could have been’ for her because her father, for whatever REALLY motivated him, denied her life and living. Had he waited and watched, as so many parents of children who are neurologically insulted with cerebral palsy do, he might have been the beneficiary of a lovely gift; the gift of a daughter who would learn to ‘speak’, to communicate. She could have gone from the ‘awareness’ of a 4 month old to becoming more part of her world with the intellect and aptitude of an 8 year old, though possibly without the power of speech as we know speech to be. There are other ways of communicating. Robert Latimer denied his daughter those ‘other ways’. If he’d only waited! Where was the mother’s love during all of this? Was she afraid to give voice to her own fears and anxieties? We’ll never know.

Brain researchers are increasingly confirming what auto-insurance actuaries have long known - the powers of decision-making, especially under stress, don't fully mature in most people until they are in their mid-20s.

Copious sophisticated imaging studies and other research show that the frontal lobe of the brain - the part involved in judgment, organization, planning and strategizing - gets all its gray matter by age 11 or 12. But the myriad connections from the frontal part aren't completely wired to function like an adult for at least another decade. Imaging studies also suggest that because the braking system of the frontal lobe is still developing, signals from the primal emotions in the brain tend to get the upper hand. 

This is where I take issue with the actions of Robert Latimer when HE decided that his daughter’s pain was intractable and that death is what she would have wanted. Did the medical community say or suggest to him that things ‘may’ improve? With time, would his child have had more developmental function as the brain matured? Did the specialists in the medical community encourage him and his wife to WAIT?  They were told that a surgical procedure on her hips would relieve pain and possibly improve things. Her father was opposed. Was the mother opposed? As mentioned, Tracy was said to have had the mental age of a 4 month old at  the chronological age of 12 years. Where would her ‘mental’ age have been had she been ALLOWED to live 10 more years? Had Robert Latimer waited, and his wife intervened to ensure he waited, his child may be still alive today, albeit still with the mind of a child who would require a parent or other adult to provide daily care, or be placed in the hands of the province and cared for by professionals trained to meet the daily demands of looking after a child like Tracy. With that, she might have become a child who could be taught to read, to communicate; to articulate, even with mechanical means, her feelings, her intentions, her wants, her needs. Her father, through his actions, robbed her of that and set the stage for a debate when there clearly shouldn’t have been one. The value of Tracy’s life was determined by someone who acted because the value of his own life was being impinged upon by her very existence. If he were to be honest, he’d admit that. I would so love to have a face to face with him, and invite him to look me in the eyes, a 58 year old woman aging with cerebral palsy, and tell me that he still feels he did the right thing.

For Annette Corriveau, Janet and Jeffrey will forever be her babies. Living in adult bodies now, they are thought to have no awareness of what is going on around them, yet she plodded along with them, for them, into their adulthood, into a time when they should be married, with careers, with families of their own, giving her what parents of adult children look forward to – grandchildren. There’ll be none of that for Annette Corriveau, but she still has her babies. Robert Latimer has Tracy no more because he denied her. Sadder still is that he denied himself.

Annette Corriveau is clearly physically, mentally and emotionally exhausted yet she still has a strong connection to her children because she doesn’t know what to do without suffering the wrath of the public. She wants to let them ‘die with dignity’; but allowed to die. The Janet and Jeffrey she once knew were lost to her years ago, yet today, they live, they breathe; they’re in this world, but at what cost? Their mother feels their time with her and those who love them should come to an end, not because SHE wants to be free of them so much as she has had decades to watch a decline, that had there been an awareness of the inevitable, her children would have perhaps articulated a clear intent of their wishes. Alas, it’s too late for that. They cannot be asked what they want. 

Annette Corriveau’s situation with her children differs from that of Robert Latimer with his daughter; she had a knowing of happy, engaged children who were healthy until the decline and diagnosis manifested and the outcome would change lives forever; she chose to press on, one moment, one day at a time; year after year. Robert Latimer, on the other hand, from my perspective and what I’ve read of his case, chose to cut his losses and run. The fact that he initially lied about his part in the death of his daughter is very telling, and in some measure, the outcome may well have turned on that point. But my purpose here is not to revisit the legal component of what he did, as it is clear and the Supreme Court ruling articulates it ---  he did KILL his child. He was also found guilty of rape in 1974, but got off on a technicality. Clearly, a person of  long-standing questionable character.

To reiterate, had Tracy Latimer been granted years of life that allowed her brain to reach maturity, as medical literature suggests doesn’t occur until a person is in their 20s, it is possible that she could have contributed some fabulous things to her world, to our world. She was denied. The type of cerebral palsy with which she lived put her at no risk of imminent death. According to reports, she was happy, smiling and as engaged as she could have been given her deficits of awareness. Would length of years have reduced her pain? Possibly. Would length of years have enhanced her mental acuity? Based on what I’ve learned through participation on various boards devoted to parents raising children with cerebral palsy, I can say yes. I’ve read numerous anecdotes over the years that support the claim that children with profound cerebral palsy CAN and DO improve with age and maturity as the brain is allowed to progress naturally and connections that didn’t exist at 4 months are present and functioning at 1 year, 2 years, 4 years and so on. I am testament to that with regard to my ability to have learned how to walk, though it took considerable time. Walking is a milestone that infants and toddlers are expected to reach at a certain age. For me, walking was a learned behaviour, patterned through years of physiotherapy. I still walk.

So we have Janet and Jeffrey, trapped in bodies battered by a genetic disorder that robbed them of a childhood and an adulthood and all that came in between, loved by a mother who is stuck. Then there was Tracy Latimer who is lost to her family because of a single act of  by someone I personally have concluded was and is a very selfish man who shouldn’t call himself Dad. If that appears harsh, so be it. 

My foray into this contentious topic takes a turn – on a personal note, my eldest sister lived with, among myriad disabilities, Progressive Supranuclear Palsy, a brain wasting disease that destroyed 80 of her brain matter. For two decades she did battle with Rheumatoid Arthritis, followed by Lupus; as well, she was a double-lung transplant survivor.

She spent several weeks in the palliative care unit of the hospital near where she lived in Ontario.  The sister who dressed me when I was a toddler, watched and learned how to put braces on my legs was lost to me. The sister who pedalled my legs in the bath to exercise them so I could learn to walk, herself no longer walked. There were no conversations with her. The sister who visited me in summer rehab and brought me the latest popular children’s books lost the ability to read. Yet she lived on. The sister who taught me how to cook this and bake that lost the recollection of what food tastes like and had to be fed by others. Yet she lived. She breathed. 

My sister was made comfortable but her death was not to be hastened at the hands of another. I suspect that there were no heroic measures taken to prolong life. It’s a fool’s game to wonder what she might have wanted. What she might have chosen for herself had she been able, with full cognition.

Annette Corriveau’s adult children live, but in bodies that ceased to do what they were intended to do long before they got to fully enjoy life and all that being in and of the world entailed. Tracy Latimer lived for 12 years in a body that was twisted and pained by profound cerebral palsy of the quadriplegic variety, with the intellect of a 4 month old infant at the time of her passing; she died at the hands of another. 

My sister lived a full, productive and engaged life for close to 64 years and for the last few, she lived, unaware of anything around her. Blissfully oblivious? Cycling with periods of lucidity but unable to articulate intention or to act upon it? The tragedy was not so much with her medical status, but with the fact that those of us around her, near and dear to her, were helpless as we could not act to relieve her, to free her of the hell that has become her life. That is the same hell Annette Corriveau lives in as the mother wanting to free her children. 

Were she alive, existing/living today, would my sister have a right to choose death given her mental status? Would the blinking of an eye constitute an understanding of a question put to a patient in like circumstance? Could a physician alone deliver the end with spousal/family consent in the absence of individual consent?  Thankfully, my sister didn’t live long enough to to be stressed/agitated by such a decision. Her life ended on 6 October 2012. Quietly, she simply slipped away. An entity beyond any of us mere mortals decided for all of us, including her.

Annette Corriveau cannot choose death for her children because in this country that constitutes murder. Robert Latimer  has already been down that road and was vilified for his actions. Parents killing their children has no justification under any circumstance. Janet and Jeffery Corriveau are, at law, adults. Will that be the point at law that might make a difference? Will the fact that they are of  legal age be a way that their mother can help them ‘help themselves’? 

Deciding on death – what we, as thinking, feeling human beings choose to do with our own body is our right. The slippery slope is whether those rights should be granted to parents, case by case, within the legal framework, when it comes to deciding death for the profoundly disabled adult child whose ‘quality of life’ has no quality as we traditionally know ‘quality of life’ to be. For myself, I don’t expect it can in any way be likened to ‘open season’ on persons with disability. At issue is protecting the lives of minor children who lack articulation of intent/wish/desire.

Revisiting the Terri Schiavo case and Jack Kevorkian’s notoriety as Dr. Death only serve to inflame. Often it is s/he who is totally and fully physically healthy and well who screams the loudest with regard to issues of right to die. From my perspective, and from what I have observed and learned over my 60 years of living in an ‘im’perfect body is that the able-bodied simply cannot imagine ‘it’. They’re always going to speak from a position of sound body. What they miss the boat on is when the mind is not sound. My body will never define who and what I can be. It is my mind and my intellect and my ability to reason that drive me, propel me onward, giving me the strength to cope with a body that is failing me. Should I find myself in a position where my mind is failing as the body goes into greater decline,  I expect I’ll develop a plan to ensure that no one else but I decide my fate. I can only hope that Annette Corriveau and her children find peace. 

I, for one, applaud the decision of the Supreme Court as it breathes a different sort of air into the freedom of choice. The trick will be whether we decide to inhale deeply and take in what this means for us, as individuals, today and in the future,or whether exhale with a ferocity that lets everyone know we will never agree with ‘murder’. Discussions and debate will rage on with or without us.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

IN SICKNESS AND IN HEALTH

Of late, one of the major ‘talking points’ with parents of children with disability has been concerns with regard to caregiver burn-out. The phrase “in sickness and health” has no more significance than when it is put into practice, not just spouse to spouse, but parent to child. Put into practice not just through a bout of flu or recovery from a surgical procedure or other such malady, but for the long haul - often for life!

Since my personal experience has been that of living since birth with cerebral palsy, I have an acute awareness of what parents, particularly mothers go through on a daily basis — for days, month, years, decades;  sometimes, until the death of the child who may or may not to live into adulthood. My mother readily and without complaint, at least not much, charged herself with my daily therapies - lots and lots of it. There is no question she experienced cycles of burn-out but she kept on going. She ‘had’ to - there were 7 others who required her care and attention. I cannot imagine how life must have been for her. Now that I’m a ‘big kid’ I am able to reflect on those times and fully appreciate what she did and what she sacrificed in the doing.

Historically, the mother has been the nurturer and nowhere is this more evident than with the mother whose role has become layered with the learning of skills that go far beyond that which is often the ‘typical’ for new Moms. Caring for a medically fragile child is physically, emotionally, mentally exhausting. For some, it can be spirit-breaking and they are forced to make the difficult decision to surrender their child to the care of another (specialised foster care, group home care, nursing home care).

Those who are challenged from the moment they first draw breath rely immediately on a medical team to keep their bodies alive, but it is Mom who is the backbone of the whole scene and often goes for days without rest. She takes this nurturing/nursing/caregiving task away from the clinical setting and goes home with her baby who will never in his lifetime be independent of her and others threaded through the family dynamic. She asks for help and many hands are available — at least in the early days, weeks and months. Over time, the hands of both family and friends slip away. They don’t have time. They lose interest. They are embarrassed by their own healthy children and distance themselves. Alas, that does not change the fact that Mom still needs help and will always need help for HERSELF. She helps her child, but who helps her? 

Government funding agencies support a range of goods and services for a child with disability, but what is available for the caregiver, for Mom, the nurturer? Imagine for a moment moving 90-100+ pounds of ‘dead’ weight around from point A to B, not just once or twice a day, but several times a day! This is the routine of thousands of mothers and other caregivers, day in and day out, month after month, year after year! The human body was NOT meant to do that! The government needs to finally wake up and address the REAL needs of caregivers and not make it so difficult access to therapies and aides that will HELP them HELP their child.  A therapy tub might seem a luxury, but for a physically exhausted caregiver, it most assuredly is a NECESSITY. A one-time acquisition that will go a long way to ensuring Mom can keep on keepin’ on. Then there’s weekly massage that would relieve those aching muscles that are stressed beyond all imagination. 

Jumping through bureaucratic hoops is not something to which they should be subjected; that is a huge slap in the face when their at home care of their child with disability is saving the government purse thousands upon thousands of dollars a year. Compare that to the cost associated with a few ‘Mom specific’ therapy/health/wellness devices. It’s a drop in the bucket. It’s about time the government stopped raining on the parade and instead showered families in need, families in crisis, with the things that they truly should have and deserve to have to enhance the quality of THEIR lives, as parents/caregivers. After a much needed rain, the sun comes out again and a new day begins. If you’re a caregiver on the edge of that burn-out cliff, don’t be afraid to make ‘the call’. Shaking up the system may well be part of waking up the system.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Charitable Giving

      When we think of charitable giving our thoughts invariably  go to donations to the Cancer Society, the Lung Association, the Alzheimer’s Society, their long-established history gives us confidence as we write a check or put bills and coins in collection  boxes.

What about charitable giving to a single person or family? How do we feel about that? Recent press about the woman who feigned a pregnancy to secure money and goods shocked and saddened even her own husband; her greed could have completely destroyed the desire to give amongst those near and dear to her with her callous behaviour calling into question all manner of other such stories saturating the media about this person or that person ‘in need’; community fund-raisers when someone loses a home is not unusual.

Several years ago, I became aware of a need of a young  boy who lives with his parents and older sister in Tennessee. Young Eli lives with the rarest form of Spina Bifida and was prescribed a ‘specialised’ wheelchair that would significantly improve the quality of his life medically, physically, emotionally, socially, and even academically! Yes, that’s right! Having a specialized chair would stimulate his acquisition of knowledge. No doubt you’re asking why that would be so. Imagine for a moment that you were not able to get up out of your chair and move about, to get a drink of water on your own, to open the door to your home and go outside for a walk down to the park, or wherever it you might want to go. Imagine not being able to do that for 3 years? For ten years. For 60 years! 

Not being able to do those things is Eli’s reality, but he will get closer to having what we so easily take for granted with his ‘superman wheels’; a specialized chair will allow Eli to expand his world and learn. He will be able to interact with peers and do little boy things without his mother tied to him. Having a specialized chair will allow Eli’s mother,  in particular, to spend less time tethered to him and more time meeting her daughter’s needs. As well, as Eli becomes free with mobility, his parents will be less stressed and be able to focus more time and energy on their relationship - nurturing that relationship makes them better parents. So, the wheelchair was not and is not just about Eli and his need for speed!

Initially, a review board under the auspices of one of the social welfare/health programs in the US turned down, denied approval for the chair, saying it was not ‘medically necessary’; his age was held up as one reason. Why then, was young Eli being trained in a chair very similar to the one he needs if he will never have one? That makes no sense. Can that not be viewed as wasting money? Why spend on a kid who’s not going to use the chair? What’s the point? Not seeing the logic in this, I decided to investigate - I’m like that! 

Eli has a presence on Facebook and his story was ‘put out there’ and the response to his need has been huge! What the ever-elusive ‘system’ denied him, the public made happen. The manufacturer slashed a significant amount of  money off the cost of the chair and a public outpouring of support took care of the balance. Eli will get his very own chair; training continues! So taken were the followers of Eli’s journey with what he can be and do with mobility, more things began to happen for the family. A van was gifted to them and it couldn’t have come along at a better time; their vehicle was on its last puff. Unfortunately, the van could not be adapted to accommodate the wheelchair so was surrendered to be donated to another in need. A roadblock? Yes? Insurmountable? No! The fund raiser exceeded expectations and there was sufficient funds to purchase a van that will be adapted to accommodate Eli’s new chair. There’ll be no stopping him now!

Charitable giving isn’t just about the money donated; it’s about how the process of giving brings people together.  Look what a little 3 year old was able to do to the hearts and minds of people who are far older. He touched something in all who got to ‘know’ him, if only in a limited way.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

JOURNEY TO ACCEPTANCE: A TIME OF REFLECTION

From my perspective, people fear that which they do not understand. When the reality of something ‘different’ becomes part of their world, obviously they’re going to have concerns – how do I hold a child who is so tiny and frail? What do I get her for Christmas? – she can’t hold a doll. She can’t play with a bake set.  He’ll never bat a ball or stand on a skateboard; so many experiences never to be realized. What must be remembered is that there will be other albeit different experiences. Focusing on child-typical pursuits is not always the way to go. Look to what might hold the child’s interest if there is a good deal of high functioning intellect and awareness in the absence of fine or gross motor skills. Very often, children with deficiencies to mobility are doubly blessed when it comes to intellect – when a door closes, several windows open. Depending on the degree of limitation, there are numerous opportunities in spite of disability, or as I often have said, because of disability .

As time passes and the child’s limitations become more evident, parents must accept that part of themselves that is always going to be ON with regard to how others treat their differently able child; ready to do battle with those who say unkind things, mock and stare. For the child who is intellectually intact and verbal, he will hopefully develop a shell to the slings and arrows of life while not growing hard and cynical or feeling entitled. Rather, he will begin to realize that as much as he is a curiosity to others, he is also a lesson. Parents will have to accept that people will stare; some will glare, others will point. In the adult, from my perspective, it’s rude; in the able-bodied child, it is simple curiosity and they’re at the age where they can be educated. Empathy building tools are perfect examples of positive teaching with youngsters, as those tools will be carried with them for the rest of their lives.

Accepting ourselves, disability or not, allows us to accept others. We can learn much by really listening and really hearing both what is said and what is not said; we can also learn much by being still and observing. Listening and observing are often well developed skills of the intellectually intact person with since birth limitation to mobility – tools of the trade of life, as it were. Those who acquire late onset disability such as paralysis due to accident or illness or some other disabling condition or disease that impacts quality of life must face an array of challenges, notably a challenge to a particular belief system they held prior to joining the ranks of those with limitations to daily living. 

Those who must live with adult-onset disability have to redefine their emotional and spiritual ‘selves’ to mesh with a new physical ‘self’ that will be presented to the world at large. For some, it comes easily while for others, living on the other side, as it were, is a trauma from which they may never recover, often with thoughts of suicide clouding their judgment. Sadly, some succeed in freeing themselves from their personal pain, leaving family and friends questioning ‘God’s Will’, ‘the unfairness of life’, ‘this should never have happened’. Though I have not investigated current statistics surrounding suicides amongst the disabled, since birth and others, I suspect that the numbers are not as high as they would be in other populations, though assisted suicide may figure strongly into the calculations, particularly with those not just in physical crisis, but also those in emotional and financial crisis as they cope with the impact of disability. It is for those people that counselling would be critical to bring them back into a mindset that allows them to accept that they do have purpose; can, indeed, have a life worth living.

Having opportunity to interact with those who have lived with since-birth disability allows those new to life as a person with limitations  an opportunity to see that there is life beyond use of  arms, legs or both. Acceptance is appreciating all that one has without the physicality of the body.  Acceptance forces us to reach deep inside ourselves for a resolve that tells the world that we will survive – that our living of life though physically taxing and emotionally stressful will not be without joys and successes. Our joy comes from realizing that we really are of value, that we really do matter. Most importantly it is necessary for us to matter to ourselves so that we can sift through the stuff of us and find a recipe that will develop into something delicious and filling to those who join us in celebrating ourselves.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca