If these walls could talk

In my infancy, toddlerhood, and pre-teen years everything about my day, from my rising in the morning to my going to bed at night was orchestrated by my mother; very rarely, my father, as he was busy practicing medicine (when are the ever-elusive ‘they’ going to get it right!). 

 From the clothes I wore, to what I ate for breakfast, nap time, play time, going to church and going to school, my mother was ever-present. A big part of my childhood, while growing up with 7 brothers and sisters was ... exercise aka therapy aka "I hate it!" Again, the Mom factor. There would be no escape for thirteen years or so. As a small child, living with cerebral palsy required not only the wearing of orthotics and using crutches, it also involved a lot of pulling, pushing, and stretching of my legs, as they bore the brunt of the effects of  spastic diplegic cerebral palsy (one of the lesser forms of this fixed neurological condition). 

What follows examines all those exercises that were "done" to me, as I was not able to exercise independently. My mother tried to get in 4 sessions daily – quite a feat considering she was caring for 7 other children, though the older ones were pretty much able to look after themselves.

Should  you parents of similarly neurologically insulted children wish to apply this regimen in your own child’s routine, I encourage you to consult with your  attending physiatrist or physiotherapist for approval. Though the exercises involve basic movement/manipulation of spastic limbs, it would be important to confirm that what was utilized with me will be appropriate for your child.  It was the rigorous, four times a day protocols that got me on my feet and kept me on my feet for almost 57 years. It’s thought by some in the local medical community that I may well be the oldest uprightly mobile and still moving spastic diplegic in Canada. 

To avoid unnecessary repetition, I 'd like to point out that each exercise was done in sets of 10. As I grew older, a few other exercises were introduced; ones that I could do independently ... like using a rowing machine to strengthen back muscles, riding a stationery bicycle to tone leg muscles;  with time, I would eventually learn to skip rope and ride a two-wheeler :)

But for now, let's get fit!  Crank up some tunes to create a rhythm. These exercises are essentially for the cognitively aware child who can respond to instructions as required. But ... they can be modified as needed to meet the needs of the child who is more involved. 

1) With the child lying on his back with a small pillow under the head, Mom or other "therapist" raises the left leg, placing one hand over the knee to keep it straight, and the palm of the hand on the sole of the child's foot. Raise gently until slight resistance is met (don't force beyond the child's comfort zone ... that will come with time). Hold to a count of 10, and lower slowly. Repeat 9 more times :) Then do the right leg. If the legs tend to scissor, put a wedge between them, so that the free leg doesn't interfere with the one being exercised. This up-down exercise would help promote arm tone/strength if they're involved. Explore what feels right to you as you work with your child. 

2)  With the child still on his back, and the wedge between the legs, bend the leg, and gently push the knee towards the chest. Place your palm under the child's foot to stabilize as you gently push the leg into the chest. Ideally, a second pair of hands is handy to restrain the free leg to make the exercise more effective. Again, don't go beyond the child's comfort zone. As he becomes more "flexible" range of motion will increase. Repeat for the other leg. I'm sure this exercise could be adapted for the upper body if involved. 

3)  With the child on his side, aligning body as straight as possible, raise the leg up, then, forward and then backwards, coming towards yourself as you work from behind the child. Again, use a wedge if spasticity/scissoring is an issue. Repeat for the other leg. 

4)  With the child still on his side, with wedge in place, bend the leg at the knee until the toe touches the buttocks. Again, do not go beyond the child's range of motion. Pushing beyond his physical limits is almost as bad as not exercising him at all. It will only elevate spasticity. 

5) Prop the child, if old enough up against a sofa or other solid piece of furniture. Observe to see if he can balance himself - prop/guide with your hands when necessary. Use verbal cues to guide the child as he attempts to maintain a seated balance. Straighten upper body as required. All the other exercises, over time, will develop back and trunk strength to ensure improvements with sitting posture. Soon, he'll be ready for standing and stepping.Over time, introduce objects for him to reach for, and encourage him to return to the upright seated position. This exercise is also developing eye-hand co-ordination. Helpful when he graduates to sandbox play. 

6)  With the child on his stomach, again with wedge if required, bend the leg til the toe touches the buttocks. Repeat with other leg. 

7)  Return the child to the on the back position and gently massage the legs. Return him to his orthotics. if applicable. Now, wasn't that easy :) 

These exercises can be repeated after dinner, before bed, either a group of them, or all of them, perhaps for 5 times each, followed by a warm bath.  Over time, you can introduce other exercises to the regimen. Sit-ups are good. Holding the child's legs down with one hand, allow him to use your other hand /forearm to pull himself up to a sitting position, as far as he is able. Lower him gently on his back. Repeat 10 times. Follow that with what I call cat stretching. Position the child on his knees, and have him arch his back, if he is able. If not, continue to work on the other sets of exercises til he develops that ability (if he's meant to).

 Hydrotherapy (think swimming!) is another great exercise. Range of motion is broader for exercises done in water. Besides, water is relaxing. If you don't have a pool at home, ask the manager of the community pool to consider raising the temperature to accommodate mobility disabled people. Perhaps an organized swim afternoon might be something to consider to ensure that everyone who is able can participate. 

As the child matures, you will introduce other exercises that will develop muscle control for standing/stepping. Stand the child up in front of you, and push his feet, one in front of the other, with your feet. You're patterning the "walking" . Do this one a couple of times throughout the day. If the child is cognitively aware, remind him to keep his heels on the floor and avoid toe-walking. Token economy is a good tool for eliciting favorable responses. If the child is able, introduce him to a walker early. Or, if he is less involved, a small table he can push around is useful. Serves also as a great place for him to gather his play gear to move from place to place :) Something that has a raised edge so stuff doesn't slide off is convenient. As his walking/stepping ability improves, encourage him to walk on his own in the house, using furniture or walls as "touch spots" for balance. Over time, encourage him to concentrate on less wall/furniture touching, looking straight ahead and moving his feet, one in front of the other. Stress the importance of not watching his feet. An upright posture will improve spine strength.

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

What I learned from my sister

In Memory of Helen Maureen (MacInnis) Scott

31 December 1944 - 12 October 2012

Anne with an e! Maureen with two! Maureen was 10 years old when I was born. On the 18^th of May, 1954, she found herself presented with another sister; a sister who would be unlike the one she already had and unlike herself in a few unique ways. With the passage of time, the elder would teach the younger about the value of the E – empathy, endurance, energy, empowerment, and -- elegance. My sister, as she grew into a young woman, developed a quiet elegance, very much like that our mother had in abundance.

Maureen, as pack leader, had a lot of endurance to put up with rambunctious younger siblings – David, Ian, Nola, Roddy, Robert, me, and Michael who probably drove her to distraction; though Michael and I probably not so much since he was an infant and I was 3ish when he was born. How much trouble could the two youngest possibly be? My sister was an energetic force on the basketball court in high school, captain of the team, a friend to all who knew her and in her later years, I called her a social butterfly; with her easy manner, people gravitated to her. No doubt, during her school days, lots of guys had crushes on her when she was a junior and then a senior, but the man she ultimately married was a perfect match in so many ways. She was very pretty, but more importantly, my sister was a very nice person. What I’ll always remember is that she always made time for us, mostly for my younger brother, Michael, and me. She was rather like a mini-mother, especially for our brother. When she was in high school and dating, she took me and Michael on a few car dates – to the drive-in – with sleeping bags and snacks. Memories were created for us three on those occasions. Then there were the hamburgers and fries at Howard’s restaurant, and the ice cream cones.

It was the summer of 1966 – on the14th of May of that year, my sister got married and at the age of almost 12, I got to wear my first ‘real’ pair of shoes; on her day, I would be free of the below-the-knee orthotics (heavy metal braces) and ugly brown boots. She insisted! How grown-up and special I felt wearing those black patent leather shoes that were chosen, no doubt with guidance from Mom. I also remember the dress that Maureen and I picked out together at Marich’s clothing store; blue with white dots. May 14^th held additional significance for our family; it was also Mom’s birthday. I can’t recall if there were two cakes, though if there was a birthday cake for Mom, Maureen probably baked it. Nothing like baking a birthday cake the day before you’re to get married. It’s possible, however, that our middle sister, Nola baked the cake. She was and is a great baker, but I have to say Maureen was probably the best of us all. There was to be a third cake – one for my brother Roddy and me as we had birthdays close together, his on the 13^th of May, 5 days before my own. I don’t recall ever having a cake on my own special day; that’s what sometimes happens in a large family with many children who have birthdays in the same month, or within weeks or days of each other. An economy of time and energy was necessary if Mom was to maintain sanity.

A few months after Maureen got married, I would be out of school for the summer and about to go on a new journey; an adventure. I would be taken to a rehabilitation centre for intensive therapy as in-patient, mostly physical therapy on my legs. For years, our mother spent time each day working on my legs, with my legs. Maureen and some of the others did their bit, too. I’d like to think that having me as a baby sister taught them all a few things about a few things ☺

It was Maureen who, during her first year of marriage, over the period of hot summer months, introduced me to Anne with an E. Anne of Green Gables, the first in a series of books that she brought to me while I being held hostage, having my legs pulled and stretched this way and that, at the Forest Hill Centre for Rehabilitation (since re-named). The FHCR was in the same city where my sister and her new husband were to live, Fredericton, New Brunswick. It would be during these months that her endurance was no doubt tested by a little sister who was frustrated beyond words with what her legs could not do and would never do. Yet she still visited me, brought me books, games, dolls. She and her husband took me out for drives, for ice cream, lunch in city restaurants. Then it was time for them to bring me back to the Centre at the end of a visit. I didn’t like that part, but I knew she’d be back to see me again. I was good at waiting. Still am.

Books were a huge part of my life from the outset; Christmas and birthdays saw lots of books coming my way. Dad subscribed me to a book club – the Companion Library – double-sided books arrived in the mail every month. I was in wordy heaven. All the old Classics – a lot of Dickens in that collection. Then there were books that Mom bought – The Bobsey Twins, The Nancy Drew series and the companion series, The Hardy Boys; The Five Little Peppers and How They Grew; Little Women, Little Men; on and on. Then – there was Anne with an E; the stories that captured me and drew me in; the odd girl out who would find herself as she grew and realize she had something important to say. I was Anne with an E and she was me. She hated her red hair; I hated my body, my legs and what they could not do. It took growing and maturity for me to realize that my scrawny, weak legs didn’t have to stop me. What rested upon my shoulders – a good head, a good mind, would carry me through. I think my sister saw that – thus her decision to keep the books flowing – her gift of Anne and the ‘Anne books’ I treasured for years. None of my books had turned down corners; they were never laid pages down while waiting for the next chapter to be read; when a chapter was finished, a bookmark was slipped between the pages and the book was closed and placed on my night table until the next part of the journey began the following evening. Over the years, while still living at home, my library grew. When I went off to university, the books were safe for many years. Then it happened! Mom donated my library to the elementary school. She kept back the Anne with an E books – they were to find a special home – that collection went to Maureen’s only daughter, Kathryn. I’ve never thought to ask if she still has them. If she does no longer, I can only hope that they have gone on to be enjoyed by other girls who are in need of a few Es of their own.

Early on, I was a screamer and a whiner; I was later to understand that screaming and whining were not strictly functions of a bratty kid, but more a frustrated reaction to cerebral palsy, the condition with which I was born that altered the way I would move, the way I would grow up, and the way I would live from childhood to adulthood. In fact, I had conversations with our younger brother about the frustrated mini-me of our childhood and he understood as an adult what neither of us appreciated as children. We get on very well now because we now understand what my needs took away from him. I was treated as the ‘baby’ of the family, when that was his spot. Certainly, there were going to be trials. Maureen steered us through all manner of infantile messes that we created because we lacked the awareness to see that things would get better. She knew!

From a child’s perspective, cerebral palsy robbed me of a lot with regard to interaction with other children, particularly in play settings. I never felt that I quite fit. As an adult, I am very comfortable in my skin, and on my slender legs supporting equally slender feet. Though they still don’t move well, my legs look damned good. Our father always said, of the 3 sisters, I had the nicest looking legs; whether that was his way of reassuring me that it didn’t matter that they didn’t carry me around a basketball court or across a skating rink, or he really did believe they were nice looking specimens with well defined quadriceps, it meant a lot. It told me that he and the rest of the family weren’t going to allow themselves to measure me, to define me based on what I could not do. Over time, it became clear that there was not much that I couldn’t do. I often sat in the kitchen and watched Maureen as she baked this cake or that pie. I was taking it all in, like a sponge.

I remember one Christmas when she was home with Peter, Maureen decided we should have a fondue. She made some really tasty dipping sauces for the strips of beef that she and Mom prepared. Then there was the chocolate fondue with fruit.

As her own two children grew older and I had occasion to spend time with them during their visits to Nana and Poppy, they, too, developed an E of their own; an empathy for those who were ‘differently able’. I remember more than one evening when Maureen and Peter’s children were to be in bed asleep but they were, instead, having a serious discussion with me about my life as someone who walked awkwardly; how was it for me as a kid, and so on. Maureen, being a wise young woman, like our mother, let us alone and let her children ask the questions they needed to ask – so that they would learn, and take that learning and knowledge along with them because my sister knew that her children would meet others like me – some with more serious limitations, and as everyone knows – knowledge is power. Another E – her children became empowered thanks to their mother, my sister. There would be , over the years, many visits to the home of our childhood -- Maureen, her husband and children, and sometimes, Maureen on her own, as Mom and Dad grew older and she felt it important to spend time with them. She was always baking something special for them during those ‘home visits’.

When we were all adults and on equal footing, Maureen got to know the mature me; the me who studied psychology and social work. The me who worked in a group home with intellectually challenged young people, and the me who still had the artsy crafty bent – a few hand knit blankets and a hooked rug found their way into Maureen’s home with Peter and their children. I had occasion to visit and see the rug draped over a sofa. She explained that it was far too pretty to put on the floor as she realized how much work went into it. She respected my gift on so many levels; yet another memory of her generosity of spirit. She got to know the me who wrote about life as a person living with since-birth disability. She got to know the me who went on to get married and make it clear to all who knew me that I was going to be just fine. What she taught me when I was a small girl was huge; thanks to my sister I felt comfortable in the kitchen. So many with disabilities such as cerebral palsy don’t have such wonderful opportunities for learning, for growth, for empowerment. My sister gave me all of that! Cooking for a husband who appreciated my talents in the kitchen made for a happy and healthy home couldn’t have been achieved with such ease were it not for my sister and her showing me that I could do, that I can do.

Years passed and my sister faced considerable challenges of her own; in her 30s, still a young woman, she was plagued by rheumatoid arthritis and over time it worsened, robbing her of energy and wracking her body with unimaginable pain, making it necessary for her to take many drugs. Over time, other medical complaints compromised my sister’s quality of life but she never let what she didn’t have anymore get in the way of enjoying what she still had, what she would always have – a husband, and children, and then grandchildren whose love for her knew no bounds; family and friends who were witness to a strength of character and will wrapped up in an elegance that was very much a part of who she was. She was Maureen.

                I came into the world impacted by an injury to my brain that resulted in a life of living with and now growing old with cerebral palsy. I was fortunate to have grown up in a home with an older sister who took it upon herself to make sure that I would have childhood experiences not unlike those enjoyed by other little girls, though the way I explored new things might have to be slightly altered. My sister came into the world, healthy and whole, growing up to marry and have a family of her own. I doubt she ever gave thought to the idea that she would spend most of her adult life living as a person with disability. Maureen empowered herself to rise above and to press on, and that’s exactly what she did until she drew her last breath. All the breaths of Maureen live on in her brothers, her sisters, her husband, her children and her grandchildren. We all will make sure that who she was, and what she meant to each of us, will never be forgotten. God’s speed, Maureen.