Bend me, shape me

  “Form follows function” - many of us are familiar with this quote by American architect, Louis Sullivan. We might ask  — ‘what does it mean?’ 

In simple terms, it’s the principle that the shape of a building or object should be based upon its intended use. As form and function relate to the human body and what it does or has potential to do, I am reminded of the of a 60s’ song, “Bend Me, Shape Me”. 

I was born with, will grow old with and will die having lived a life with since-birth  disability; one among several, so my form, my body and function was largely dependent upon what was done TO legs and feet when I was an infant, toddler, (though I didn’t toddle), up to and including my 13th year to ensure that it was able to function in a way that was compatible with independent movement and independent living. I was, in effect, shaped with  daily therapy so that my legs would mimic the process of crawling, standing, stepping, walking; repetition of the steps, also known as ‘patterning’  allowed me to more fully experience my world as I grew taller and gained better balance. 

Parents of children with mobility disorders are very hands on with regard to what they DO to their child’s form to improve function, but how much time they spend with their child depends on so many external forces that impinge upon the daily allotment available in their jam-packed day. For me, as I grew up in the 50s and 60s, that wasn’t an issue given my mother was a stay-at-home Mom — who also had 7 other children to nurture, to raise. I was fortunate that my father, a doctor in the small village of Bath, New Brunswick, had access to specialists who got involved very early in my development. If parents just don’t have the time to do what they know they should be doing or could be doing and are feeling guilty about it, I have a suggestion. Consult with your child’s therapist, as age dictates, and look into swimming lessons. Ballet classes and horseback riding would be ideally suited to the child with minimal to moderate deficits to ambulation. Perhaps a blend of the 3 ‘therapies’ might be something to look at.  A huge benefit is that the child would no doubt be in a group with other children with similar needs. That’s something I didn’t have. I had at home-therapy mostly with Mom, hospital ‘polio clinic’ therapy and Rehabilitation Centre therapy. My first therapists were Scotsmen and they were right to the point, making it clear that my match-stick legs were going to do what they were supposed to do, even if it was movement that didn’t remotely resemble that of other children. I’d get where I needed to go with their help. And I did! And I’m still going!

I have memories of my elder sister ‘working’ my legs, and another sister giving me pointers on riding a two-wheeler. Legs were encased in heavy braces and my steps guided with  wooden forearm crutches, all so that the form of me would function without risk of injury as I moved about in the house or outside. On ‘free days’, without the leg braces and boots, I would shuffle in socked feet, but still be reminded to heel-toe as I moved. Today, I remind myself to do that all these years later. At 61, I’m still ‘patterning’.

With all the press about fitness, health and wellness, nutrition, obesity, to diet or not to diet, internal cleansing, diet supplements and energy drinks, I just have to shake my head. Quite frankly, it annoys the crap out of me that people take their gifts of health and mobility so much for granted. And ‘they’ DO! When things fall apart, off to the doctor they go, bemoaning their sorry condition. There’s not a lot of discussion about how they got there; instead, lots of tests, lots of advice,  and in some cases, far too much dependence on pharmacology. We’re a society of the over-medicated and very often the real diagnosis is too difficult to accept  — ‘you are killing yourself with your diet and your lack of exercise, and there’s not a pill in the world I could prescribe that will cure that!’ Doctors shouldn’t fear dispensing a healthy dose of ‘get real’.  It might save a life.

What YOU do to your body each and every day affects the quality of care that people in MY situation get. If doctors across the province were polled and asked what percentage of their caseload is comprised of men, women and children whose situation is self-induced, the numbers would be staggering. Clinicians spend more time trying fix what you broke than they should, and folks like me, aging with since birth disabilities over which we had no control, may need more time and we don’t always get it. 

Remember this — excessive ‘after hours snacking’ as I call it potentially puts you one cardiac event or stroke away from walking like me. But first, you may have to learn how it’s done and that could take years! That’s how long it took me.

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 

Exceptional parenting

Parents raising a child, or even several children with disability are living almost every day with very little help or times of rest, and they’re not often admired or honoured, let alone acknowledged for what they are doing. Sadly, they are sometimes criticized for not having aborted their child or for not having him institutionalized, Regardless of any choice they make, they are going to be criticized, going to be trapped. Very often, the trap is of their own design, built out of frustration and a sense of failure. They rise to exceptional when they accept that theirs is a journey of self-discovery and an awareness of what life really means. In discovering and getting to know their inner self that steps up and bucks up for battle, they allow those around them to pause and take stock of their own lives and what they are ‘doing’ with them. 

Those who make the choice to care for children in institutional or group home settings are lauded for their efforts, held up as ‘saints’, being wonderful and generous; they have ready access to help and encouragement from professionals and clergy on a consistent basis; they have days off – they have salaries! They are viewed as selfless, having ‘a calling’; a ‘gift’. 

Is the same not true of the biological parents of such children, who live with them and care for them, day after day, year after year, decade after decade, while also trying to parent their non-disabled child or children, in a home with mother, father, sometimes a grandparent or two as they grow old.  Are they not equally generous and wonderful? In addition to the challenges of parenting, these men and women also must carry the financial burden, sometimes for  their entire lives,  and make no mistake it IS expensive to raise a child with disability. Where is the praise for them? Where is the extra help for them? Where are their days off? Where is their salary for going well above and beyond, with little or no regard for what toll all that effort is taking on their physical body, let alone their emotional and spiritual bodies?

People who have chosen to share their time and talents in communities such as L’Arche, founded in 1964 by the world-renowned lay theologian and philosopher, Jean Vanier,  learn more about themselves in a year or two than they ever thought they would, and perhaps more than they’ll learn in a full, lengthy life of many years.  Often they undergo a period of training or have backgrounds in psychology, social work, nursing, or any other such field that supports work in the health/wellness/disability arenas. They are trained, in effect, to become parents of the parentless.

It’s not unusual for some university students after that first summer internship in a group home setting to appreciate that they have a ‘calling’ to live and work amongst those with disabilities, whether a disability to the physical body or to the intellect or both. What is beautiful is that quite a few students make it their life’s work to improve the quality of life for those who will never possess the tools to do it on their own. They are then able to see what parents who care for children at home are up against and it gives them an appreciation for caring for a child with disability can bring to, yet at the same time take away from the family dynamic.

For those who become parents of disabled children, there is no handbook; no courses to be taken, no degree that is presented upon the delivery of the child because there’s no real graduation. These parents are thrown head first into the deep end of the pool, to become the  preservers of that life that is about to go under; that life is their child, forever a part of them, for however long they are graced with the presence of their newest teacher. For every exceptional parent, the new student,  there is an exceptional teacher, the child. In a typical classroom, there is a consistency, a routine that flows day after day with new skills to learn added and a group with a singular purpose learning in unison.

The learning of the parent and that of the child with disability often changes from one moment to the next, and is sometimes beset with crisis. The first lessons are learned often while mother and child are still in hospital. A spiked temperature, a feeding tube dislodged, a rash that won’t resolve, fitful sleep patterns or no sleep for either child or mother. Imagine years of that scenario playing out, with stressors changing at random. How do parents do it? I, for one, am at a loss to even begin to imagine how life must be for families raising a child or children with any sort of disabling condition. Though I was a child with disability and now an adult living with disability,  I had no clue what my parents went through but that is not to say I don’t know what those like me are going through. I have to say my own parents were exceptional, raising me along with 7 other siblings at a time when mothers stayed at home while fathers worked to earn the daily bread, or our in case, several slices per day.

Exceptional parenting is about learning all the medical procedures that may be required on a daily basis to manage care of the child with disability, particularly a condition like cerebral palsy. It takes a fortitude of spirit to withstand the strain of the panic-fueled races to the hospital in the middle of the night, traveling in the back of an ambulance as EMT’s work on a child who has coded. That trip plays over and over again, for a year, 5 years, 10 years, 20 years. Yet, there they are — the parents. Ever present! Ever vigilant! Staying the course! 

Exceptional parenting is being willing to get pushy and even loud on behalf of the child who cannot push or who has no voice. Infant and child care programs have, over the years, become more inclusive, so that children who are differently able may be monitored and cared for in a safe environment, even if only in a limited way. Their inclusion in some measure gives Mom and even Dad, if he’s fully hands-on, a break from the rigours of daily care. Respite is absolutely critical for parental and family survival and it’s equally critical is that the community at large fully understand this need and make themselves more available on a consistent basis. It  really does take a village to raise a child, and in many cases, it seems to take a village and a half to raise a child with special needs. Emotionally raising up the parents so that they can press on must be ongoing so that they will never feel that they are alone, stuck in ‘it’ by themselves. 

Being an exceptional parent also involves being an exceptional friend. If you have a spare hour or two that you can give a parent or parents of  child with disability, with an offer to sit with their child while they refresh and reinvigorate themselves, then you have given them a huge gift. Multiply that gift by networking with several friends offering your time and energies to those who are maxed out and exceptional parenting becomes a community affair.

I feel a song coming on — ‘We are Family!’

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 

- 30 -

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