“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
