Thank goodness I'm a lightweight

 

Photo: PEXELS

Cerebral palsy often causes or contributes to secondary conditions and those living with cerebral palsy, such as I am are at risk for arthritis, the pain and stiffness in joints resulting from wear and tear on the cartilage over time. To ensure compliance, explaining to children the daily life protocols to cope must be delivered in easy to understand language. Children with cerebral palsy benefit from preventative strategies, pain management, surgery, and other treatments for arthritis, given there are more than 100 types and it’s important to follow progression at the point of diagnosis. It can be like a runaway train.  Ask me! I know!

Currently, I’m doing battle with inflammation of both hands; shoulders, elbows and wrists are involved as well. Inflammation in the joints, which causes swelling, pain, stiffness, redness, and difficulty moving the joint can take a shot at any part of the body, including the knuckles, elbows, shoulders, hips, and knees. Cartilage degradation is a key player in the destruction, so adopting the ‘we are what we eat’ philosophy contributes to improving outcomes in the long term.

Risk factors for the development of arthritis include a family history of arthritis; another risk factor is having a condition that causes unusual or excessive wear on joints, like cerebral palsy. I’m two for two!

Living with cerebral palsy is a risk factor for osteoarthritis, but the degree of risk, which joints are affected, and age of onset varies by individual.  The joint or joints affected depend on the type of disability that a person with cerebral palsy has. For instance, for a child who struggles to walk, having a gait that makes the hips or knees move abnormally can lead to arthritis in those joints. As children with CP age and enter adulthood, the risk of developing arthritis increases. When a child has pains beyond ‘growth spurt’ markers, seek consult with rheumatologist.

Persons with cerebral palsy have different degrees of abnormalities in the neuromuscular system which may cause unusual movements in the joints, overuse of joints, excessive wear on joint cartilage, and compression of the joints that ultimately lead to osteoarthritis. My upper body, my arms, are assistive devices for walking and they’ve been compromised which concurrently impacts my safety.

Hip arthritis is relatively common for this reason in people with cerebral palsy. Even joints not involved in walking can be affected. Muscle imbalance across a joint is common in cerebral palsy. This can cause unusual shoulder or elbow joint movements, leading to premature cartilage wear. 

While many people with cerebral palsy will not experience arthritis until they become adults, it is possible to develop it as children. Parents should be aware of the signs of arthritis because earlier intervention will produce better outcomes. The symptoms of osteoarthritis in any joint include: pain that occurs during or after movement in the joint; stiffness in the joint, often after sleeping or a long period of little movement; tenderness when the joint is touched; inability to move or flex the joint through a full range; a feeling of grating inside a joint when moving.


Treatment plans are individualized and monitored. The least invasive types of treatment don’t treat inflammation but help with pain and mobility. These include painkillers, such as over-the-counter acetaminophen, or nonsteroidal anti-inflammatory drugs, such as ibuprofen.

Treatment can also include physical therapy and gentle exercises that help to strengthen specific muscles and make moving a joint easier and less painful. When arthritis becomes more severe or debilitating, and these non-invasive treatments provide little relief, more invasive strategies can be used, such as surgery.

It is sometimes possible for a problem causing the abnormal movements or overuse of the joint to be improved with surgery. This is highly variable by the individual. For advanced cases of arthritis in a joint, replacing the entire joint with an artificial one may relieve pain and restore mobility. Hip replacement surgery is a relatively safe way to treat adults with cerebral palsy who suffer from severe osteoarthritis in the hip joint.

Many living cerebral palsy will develop some form of arthritis and prevention may ultimately not be possible. There are ways to prevent it and minimize damage and symptoms. Knowledge is power. 

However, the critical step is diagnosing and beginning treatment for cerebral palsy early in childhood. The more comprehensive and consistent treatment a child gets, the better the chances of reducing joint damage over time. The first 13 years of my life I was exercised 4 times per day. That early and critical daily therapy to ‘grow into CP’ contributed to me being able to still walk at 70! 

Early and ongoing treatment that can help children and adults with cerebral palsy move in healthier ways will minimize the development of arthritis. This may mean surgery to correct bone or joint deformities, physical therapy and exercise to develop muscle strength and balance around joints, and mobility aids.

Lifestyle habits can also minimize and prevent arthritis. Maintaining a healthy weight, for instance, can take the pressure off the joints. Occupational therapy is also helpful in promoting the performance of daily tasks in a manner best for the joints.

Arthritis is a painful condition that most people don’t expect to experience until they are elderly. Unfortunately for people with cerebral palsy, the deterioration of joints that causes osteoarthritis begins early in life and is more significant than for other people.

With good overall treatment, watching for early signs of arthritis, and treating pain and other symptoms, a young person with arthritis can continue to enjoy life with improved mobility and minimal pain.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

                                             

Genetics and lifestyle significantly contribute to how one ages

Loss of grip strength causes lots of messes  (Photo: UNSPLASH)

According to the Canadian Institute for Health Information, “on average, seniors use more drugs than any other age group in Canada. This release describes the number and most common types of drugs prescribed to seniors (including those living in long-term care settings) between 2017 and 2021 by sex, age, neighbourhood income and geographic location.”

Think about that for a moment. Then think about it again. 

Then there’s this, from Hospital News, Canada’s health care news and best practices:  one in four Canadian seniors on 10 or more prescription drugs. Ten or more! If that’s not an OMG moment, I don’t know what is!                                                                                                                                                    

Genetics and lifestyle significantly contribute to how one ages; I’m testament to that. Genetics wreaked havoc in my family with two siblings succumbing to implications and complications of Rheumatoid Arthritis and another to Psoriatic Arthritis. 

Since my late teens, I have lived with fibromyalgia  Treating physiatrist felt that presenting symptoms suggested I had, in fact, lived with ‘fibro’ long before it was officially diagnosed, given that it mimics other conditions, particularly those in the arthritis family, though it is not an auto-immune disease as inflammation is not a feature. Interestingly, it’s frequently found in women aging with cerebral palsy, regardless of type of CP. I live with spastic diplegic cerebral palsy and at soon to be 70, I still walk and still maintain my own home; housework is perfect exercise to keep this spastic body toned and moving albeit slowly. I also live with osteoarthritis of the thoracic spine, diagnosed in the 80s.
My concerns about genetics and disease connection bore out in a recent experience that revealed a range of issues that were going to affect my home alone living going forward.


 In recent weeks my world has been turned upside down by an assault on two very important assistive devices – my hands! Grip strength dropped to barely there. I’d pick up a cup of coffee and couldn’t grip. Lots of sloshing of hot liquid on floors, counters, desk, followed by stopping midway in the task before me to clean up messes.  This became a feature of my days. It was exhausting! And those little side trips took me away to many important tasks that ultimately were put on the back burner. Thank goodness I had lots of frozen main dishes and didn’t have to compromise my daily health habits with a lot of commercially prepared heat n eat dishes. 

I was determined to get ahead of this assault on my life. My family doctor was on holiday and I needed immediate relief; getting drugs I take routinely but infrequently take on board to get a handle on extreme pain in wrists, elbows and shoulder. I was a right wreck!


That’s why Maple Health NB was created  — to make virtual health care accessible in New Brunswick and the rest of Canada. Going this route avoids congested hospital waiting rooms and walk in clinic. Many common health concerns can be resolved online in minutes. My first contact with them was excellent and I was pleased with how promptly my situation was treated. 

Unfortunately, I was in a bit of a pain-induced brain fog and didn’t ask for scripts for 2 drugs I take for fibro flares specifically. Best course, in the circumstance is to be seen. And so I was.

And so, on Wednesday, 15 May, I began a 9 hour ER journey, from being efficiently registered to first contact with care. Swelling is pronounced, making daily tasks difficult. First consult in the ER led to bloodwork; 3 different draws through my time there. There were 3 ECGs (I informed care team of my wonky heart); there was X-ray of my hands and wrists. Once I explained my need for full autonomy as a person with disability I was ‘team leader’, primarily to protect and preserve my upright mobility. One wrong ‘helpful’ hand could cause me to fall, and in my world, one such action could  find me at a nursing home’s door, a reality not lost on me. I was verbalizing what I was doing as I did it so clinician could observe a wobbly walking old broad in action; they were being educated. From rising up out of my wheelchair to positioning myself on a stretcher, to returning to standing and then sitting position. It’s all about precision and being fully aware of surrounds and what might impact my safety. The ‘average Joe’ doesn’t have to think about any of that.



 Though I sat in my wheelchair for almost 9 hours, not lost on  me was how hard front line staff worked; some were working double shifts. They checked in on me several times to see if I needed anything and as always, I said – “I need food!”. That elicited smiles. I have the metabolism of 3 men and a boy had only only a few sandwiches and a couple of cookies. If there’s a next time at the ER, I’m packing a picnic lunch, dammit. There might  be a flask of Glenmorangie tucked away under the table napkin!


Ultimately a diagnosis was made – septic arthritis. I was given three 5mg tablets of prednisone at discharge and sent home with prescription for 6 more days worth. Within minutes of dose, an OMG moment – prednisone is miracle drug! Pain was significantly diminished. I went from an 8 to a 1. “I feel good!”



Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell

                                                                                     

How we get where we need to be

Source: Pexels

 

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 birthday? – 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.

Since birth disabled persons such as I have a vastly different view of the world than one with late onset disability such as paralysis due to auto accident for example. I’ve had decades to shape my little spot in the world to match my abilities and disabilities, accommodating changes to strength and stamina as I age with cerebral palsy and several secondary impacts to quality of life.

With the since birth disabled, as 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 counseling 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 Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: mailto:carmacrockwell@xplornet.ca

How we balance our lives

Photo: Pexels

           For an individual to find what I call life balance, he must learn to manage stress; that particular S word plagues all of us from time to time, though for some, it is a daily presence by virtue of the challenges faced minute by minute, hour by hour as one copes with challenges of one sort or another. 

The daily presence of stress is the companion of anyone parenting a child with ‘special’ needs. Family life can be extremely stress-charged, not only for the immediate caregivers but for those who live in the home as part of the family dynamic; brothers, sisters, even grandparents. In order to allay the impact of stress it is helpful for parents/caregivers to seek out or accept, when offered, any hand up that is available. Those hands up ensure that Mom and Dad can carry on and give them the strength to be the best that they can be, not only for their child who needs them minute by minute, hour by hour, but for other children who need their time and attention, and for those various daily responsibilities that require their attention – job outside the home, looking after all those things inside the home that are required to ensure that everything runs along smoothly, or at least as smoothly as possible in the circumstance. 

Parenting a child with disability requires a high degree of harmony both inside and outside the home and caregivers often require space – to relax and regroup, so that they might press on for another hour, another day. Without space one may become closed, not readily allowing people to come close, even though during times of trouble we need people the most. Sometimes, we feel the need to protect ourselves because the pressure is simply too great. 

What has to be recognized with all of this is that in order for us to become more balanced and to grow, it is important that we are fit, well rested and relaxed in both body and spirit. Being alone and being lonely are not synonymous and parents of children with health situations that preclude full participation must understand and accept that they, too, have been wounded. Their pain and suffering is real; the pain they feel for their children’s losses and that pain quietly borne because they didn’t get/have the child that they had expected or hoped for. A healthy, fit child with whom they could share so many of life’s experiences as they grew together.

With schools letting out soon and many parents already in planning stages of what to do with and for their challenged child during the weeks away from the classroom, it’s often helpful to put out the feelers in the community to let people know what needs you have and to reach out to those who might be able to steer you in the right direction.

In my group home experience, I found introducing the parents on the block to the children I cared for lent itself well to other children in the area getting to know them and seeing a learning exchange takes place as interactions and learning about each other grows and flourishes.

It’s easy for us who don’t ‘walk the walk’ to tell stressed parents what to do; a better and more sustainable approach is to listen. Listen to concerns they have, listen to questions about what’s ‘ out there’ that might help their family.                                                                              

Community coming together in such out there’ that might help them better help their way also expands horizons for older children, those in junior high school, for example, who are thinking about what they want to do when they leave school. Some young people in high school balance a part time job with their daily classroom time. They’re learning management skills that will hold them in good stead when they take their place, full time in the mainstream.

Those early experiences with children who though like them in many ways are at the same time so different, is an opportune time for them to explore the possibility of a career in teaching, in medicine, in social work, in ministry. The list of opportunities is endless. Learning about balance and balancing in life is important and having opportunities to learn early in life makes moving forward so much easier. The building blocks available to children even before they are in ‘formal school’ allow them to pick and choose as they grow up and grow into themselves. 

A few hits and misses along the way aren’t going to be so problematic if young people are used to problem solving.

I remember my own skills development, as a child, playing board games on the back porch of my family home. A huge table, with neighbours to the right of me, neighbours to the left, playing Stock Ticker or Monopoly. High stakes games where we learned to think ahead a few plays. Learning about money management as a child paved the way for me to know how to manage later in life, all grown up. Balance and balancing; needs v. wants. Saving for what would enhance my life v. spending in the moment to feed immediate gratification. I’ve done both and as I age with CP I find myself doing more balancing acts as my energy to ‘get it all done’ is limited. Life is, indeed, a lesson.

 Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: mailto:carmacrockwell@xplornet.ca

                                                                                                               

Daily proactivity protects the 'at risk'

Photo: Unsplash

       Flu season has passed and again, I managed to avoid it. It usually starts in November or December and lasts until February or March. I step up water intake through the ‘flu months’. Nothing better than a bowl of hot, home made chicken soup.That I’m solely responsible for making it ensures it’s going to taste great, thank you very much!
Contrary to popular description, there is no such thing as ‘stomach flu’; it does not exist. Viral gastroenteritis is an inflammation of the intestines, causing diarrhea, cramping, and possibly excess sweating as the body tries to rid itself of the invasion.  There's no effective treatment for viral gastroenteritis so prevention is key. Avoid potentially contaminated food and water and wash your hands thoroughly and often. During cold and flu season, change kitchen and bathroom linen frequently. changing kitchen Incidence of flu was down-sized during COVID but make no mistake, it thrives and drives disease processes across the country. Be vigilant! COVID is still out there as evidenced in recent newspaper reporting.

Many have already availed themselves of the COVID 19 vaccines and booster protocols. Flu shots have been available to anyone over 6 months of age; they are particularly critical for those in ‘at risk’ groups. I’m considered ‘at risk’ by virtue of being a senior with a since birth disability and concurrent secondary implications. I don’t get the flu shot -- decades ago I had a severe reaction to my first, only and last shot. Curiously, or perhaps not, I’ve never had the flu since. In fact, I haven’t been down and out sick since the horrible consequence of that single flu shot back in 1987. It is possible that folks like me are more at risk of reaction, regardless of severity. I opt out of the shot because I live alone and if I become ill, there is no one in house to step up to feed and water me during recovery. Being responsible for my day to day is what keeps me healthy and safe. Antibiotic use is a rarity. 

My late father aka Doctor Dad told me to always finish antibiotics as prescribed unless there was a severe allergic response to them, in which case, stop and consult treating physician. Many make the mistake of not finishing antibiotics within days of feeling better. That has great potential to do serious harm. As Dad explained it, the first few days of antibiotics finds the target of infection, the second group of days begins attacking the infection and the final few days of the antibiotic course closes the system, the body,  to future invasion. So, if you stop taking the antibiotics in the middle of the course, you’re effectively setting the stage for a double-whammy effect which could land you in the hospital. Don’t do that! If your doctor only intended for you to take 5 days worth of antibiotics that’s all that would have been prescribed. Think about that! If you are given a 10 day course with a tablet to be taken twice daily, do that until the tablets are finished. Also, remember to drink lots of water. If there is no medical/physical reason not to, take probiotics during and after the course to replenish gut flora, the good bacteria killed off by antibiotics.

If you experience mild to moderate diarrhea while on antibiotics, try changing eating habits until the symptoms pass; experts recommend avoiding any fatty or fried foods. Increase  intake of clear fluids, preferably drinking eight to 10 glasses of water daily, to combat dehydration. As a short-term solution, doctors often suggest the BRAT diet (Bananas, Rice, Applesauce and Toast). Slowly adding more soluble fiber or taking a fiber supplement may be recommended Here at Chez Rockwell, bran muffins with raisins is just the ticket. There are so many recipes out there, it’s difficult to choose just one, so I like to alternate, adding either cranberries or finely diced apple to the batter. Bring coffee!                                                      

In my reading, I learned that the Mayo Clinic evidence scale on supplements gives Lactobacillus acidophilus a ‘green light’, indicating that there is at least “some evidence that the product does what is claimed and that it’s considered generally safe when used as directed.” Again, a consultation with treating physician is the best course as what might be appropriate for me may not be indicated for another.  Make sure that if you’re buying probiotics that you choose well known companies  that have been around for a long time. I did my homework before choosing the acidophilus bifidus capsules I use.

        Antibiotics must never be viewed as the cure-all for all that ails you. Sadly, some clinicians over-prescribe antibiotics without fully appreciating the lifestyles of their patients. Ask questions that will yield the best information about how a patient lives day to day: what types of foods are eaten in the course of a day, how much water is consumed. Insufficient hydration, in and of itself, is a huge problem, particularly for seniors; dehydration manifests in mental confusion, joint pain and fatigue. We really are what we eat; in being aware of what we put into our bodies we can easily see what agrees with it and what does not. That agreement contributes to keeping us out of hospital where we may be at more risk of contracting a particular bug. That being so, home is where the health is.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell




Journey to acceptance: A time of reflection

People often fear what they don’t understand. When the reality of something ‘different’ becomes part of their world, they’re going to have concerns – how do I hold a child who is so tiny and frail? What do I get her for her birthday? 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 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 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 must 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.

It heartens me to see children unreservedly interact with youngsters who will never be able to participate the same way they do. That level of awareness at such a young age is testament to what’s starting to become important to them. Don’t interrupt that developmental milestone by imposing your own beliefs. You’re already grown up!

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 counseling 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.

As summer approaches and schools will be going on break, persons with challenges to inclusion in daily living will be out and about, finally free of the restrictions winter weather has imposed. The cloud of ‘winter blues’ will have lifted and we are free to live and learn in community with men andwomen who will teach us as we teach them.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at: Carla MacInnis Rockwell

Hidden talents in adversity

Adversity has the effect of eliciting talents which, in prosperous circumstances, would have lain dormant. [Homer]

Approaching my 70th year, I look back on my life and reflect upon where I started and how far I’ve come and have to say that my adversity, such as it is, did, indeed plant the seeds of my talents, wrapped in my tenacity to press on ‘in spite of’.

  My talent for writing, a gift I shared with my late father and uncle, both doctors,  allowed me to take on the role of mentor, early in my growing up and work life and later on, as I moved to the online world, sharing what I know about life and living with disability. My uncle went on to have a successful 2nd career as a newspaper columnist offering medical advice. His columns were later developed into a book; I have a signed copy. Lucky me! 

I was a regular contributor to an international publication on disability, the now defunct Ability Network. In fact, in April of 1997, I was their cover story. OMG, I’m a glossy pin-up girl!

Dad and uncle would be pleased to know that I’ve found a niche online, particularly since aging with cerebral palsy has impacted my ability to move about easily and freely in the day to day, touchy feely real world.

 In today’s internet connected world that links us together in ways that we never could have imagined 20 or 30 years ago, we have opportunity to simultaneously explore many avenues of interest, shifting from one computer screen to another; taking it all in, like a greedy puppy.

With all the technological advancements that enhance learning opportunities, why do so many still struggle? Talent and tenacity isn’t always enough. And so enters mentoring. Someone who believes in what you can do and is willing to share what they’ve learned on their own journey so that yours may be easier. 

Simply put, many students, young or old, rely on people power to enrich their learning process.  Joining with one or two, three or four people not only allows for sharing ideas to organize thoughtful study, it’s a way to network to establish other relationships that may be more social in nature. Aligning with another who’s been there, done that is one of the best ways to ensure that what you’re diving into is going to stick. Social interactions are critical to development, from cradle to grave. 

Mentoring men and women of any age who need a guiding hand is a way that those who have talents to share are able to do so with the knowledge that they are lifting up others to a more level playing field. That is always a good thing. The beauty of it is that, over time, there’s a reciprocity as students become teachers and coach others in skills needed to advance in school or in the workplace.
Families living on the financial fringes trying to raise children through the various ages and stages of development and education very often struggle with the cost of it all. Joining forces with a mentor or two is a way for them to keep up with less physical and emotional strain, which is so draining on a family’s resources in the long term and makes the jobs of Mom and Dad more challenging.

Mentoring has no specific age requirement but it reasons that pre-potty trained  toddlers aren’t quite up to the challenge, though some would have a go at teaching a playmate how to make chocolate milk. Get out the video camera.

Children who come into the world with any sort of impediment or challenge to daily living and inclusion, however developed, have to be guided carefully if an intact intellect is present so that they can become students, however adept, of a range of disciplines, whether it’s colouring, weaving, learning to type, telling stories. The processes of ‘getting there’ are unique to the individual and teachers must step back, wait and watch to see what happens. 

Within a group of youngsters, there will be one or two or three who will quite naturally step into the role of mentor. Let them. That’s their own learning at work. All manner of skills are learned in an environment that’s not particularly structured. That, alone, makes the steps more easily remembered and put into action the next time. 

Children with disability are presented with many opportunities for inclusion that are compatible with their situations so that they are able to experience even a modicum of success without fear of failure. Feelings of insecurity often weigh particularly heavily on children who struggle to find their place in a peer group; for some, who have the gift of language, mentoring becomes easier as confidence grows. Leading reading groups is often a great place to start. Teachers and other adults in their world should encourage after school reading circles. It’s a great way to expand social circles outside of the classroom and it takes the pressure off the struggling reader as he expands his portfolio of talents. Talents that will carry him through his academic career and beyond. Community theatre is another avenue that children with challenges can explore. 

So many opportunities are available today that weren’t even thought of when I was in grade school. Endless possibilities for multiple opportunities. 

Get out there and make your own mark.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, a boisterous Havanese. She can be reached via email at:Carla MacInnis Rockwell