Tips and tricks to living with good health and wellness, challenges to daily living, aging with disability and being a compassionate human being.
Saturday, January 28, 2023
Breaking the cycle of poverty requires community solutions
Saturday, January 14, 2023
2023 can be a year of many firsts
What is normal?
In the world of a youngster growing up with disability, what is normal varies amongst children within the parameters of deficiencies visited upon them, especially for the neurologically insulted child, such as I was when born in 1954. What must go on in the mind of the mother whose child has reached the age of 18, never walking or never speaking a single word. Unfathomable.
The 16th birthday, a particular milestone enjoyed by teenagers – messaging that they’ve ‘arrived!’ is a difficult day for the parents of young men and women, voiceless and held captive in a chair atop 4 wheels, moved with proportional control, also known as a joystick. How many hear their friends talking about getting their driver’s license, putting in extra hours at a part time job to afford a car of their own. So many things young people living with neurological disabilities may never experience. On many levels, parents do know. They live for their child. It’s often a hit and miss affair with them to overcome the fear and frustration not being able to ‘get it right’ for their son or daughter.
Soon, various grade school and university graduations will be upon us as young men and women make their way further along the path before them. While many young school age girls are off choosing just the right dress for junior or senior prom, the girl who will never walk, never dance, never speak is spending time with her Mom who is trying to find or create something that ‘works’ with the chair. Her date is not the boy who sat beside in her in homeroom but an attendant; it’s all so very clinical, and not even close to being a memory that most teenage girls would want to create. Not memories Mom and Dad want to have, either, but they do. They remember the early years, out and about with their non-walking, non-verbal child, feeling anger welling up when they’d hear other parents chastise their own children for being ‘too loud’, or ‘running too fast’; and the ‘stop that at once, or we’re going home!’. How many parents of non-verbal children wish that just once, their teenage son or daughter would scream at them in a fit of temper, a hallmark of teenagers growing up and growing into themselves?
These feelings are especially impactful for Mom because she’s the most hands-on meeting the daily needs of a child who cannot help himself. With time and various therapies, skill sets expand. How much is anyone’s guess as each child reaches milestones at on his own schedule, adapting as he grows and goes. As is sometimes the case, typical milestones will never be met, and parents and child grow old together with their son or daughter never leaving the ‘nest’.
My parents got lucky with me. I was not going to stay home and grow old with them. That wasn’t gonna happen! Thankfully, growing up with 5 brothers and 2 sisters, I spent a lot of time observing how they interacted with each other and those out in the community to effectively learn the ‘rules of the road’ with regard to how I would conduct myself. My take on the world was obviously different by virtue of, at the time, living on the fringes of inclusion. In my early school life, I wore FDR-style waist high braces and used wooden forearm crutches; then there were the glasses. I was a sight to behold!
Then, as now, there were things I would never be able to do. To fall into the muck of wishin’ and hopin’ was a waste of time. Parents/caregivers need to pay attention to what’s not said by their child with disability, possessed of ability to communicate; with non-verbal children, pay attention to an escalation of ‘bad’/atypical behaviour and ask yourself what’s going on. Have conversation with teachers and other school support staff. If your child is active in after school programs, consult with program co-ordinators. Fitting in and getting along in life is fraught with challenges that can hurt the feelings of even the toughest. But what if ‘tough’ was an act; a disguise so parents wouldn’t worry or be upset?
This year has potential to bring about many wonderful happenings for children with challenges to daily living. COVID restrictions, though not fully gone, as many have made personal choices to protect themselves, have opened the doors to a resumption of many daily activities abandoned during lockdown. Parents of fragile children must always stay vigilant but always mindful of the reality that their children, as best as they are able, have a right to be included in community life even if only in a very limited way.
Letting the community know that you’re the Mom or Dad to a youngster who requires a little extra help or maybe a lot of help to participate even minimally is a way for parents to accept that their needs must be met, too. It’s important to speak up and share your troubles. Helping hands are available and there are always ample opportunities for reciprocity. Folks just have to reach out with a freedom to be themselves and let the community get to know them.
2023 may be your year to live and grow, challenging yourself to new things, revealing more of who you are to people who may become part of your circle of life experiences. That’s always a good thing.
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
Saturday, December 31, 2022
How to grow money is a lesson learned early
Saturday, December 17, 2022
All I Want For Christmas Is ....
Gifting for Christmas doesn’t have to be about adding another sweater to the drawer, another pot to the kitchen cupboard, another ornament for the mantle. Au contraire! Lots of gifts can be totally clutter free. For the senior in your world, perhaps a subscription to the daily paper that fixed income may have forced them to cancel, denying themselves something they enjoyed. Another great gift for senior pet parents is a case of tinned food for their dog or cat, or a bag of kibble. Confirm their preferred brands.
My dinner and a movie pal and I exchange uncluttering gifts; she, by providing me transportation to the city as required to accommodate various errands and I, by gifting her with baked and/or cooked goods - breads, cake slices, muffins, soups, left overs from shared meals. She reports that a single take-away provides her with two meals. Unlike me, she doesn’t have the appetite of 3 men and a boy.
Uncluttering gifts, especially at holiday times such as Christmas, go a long way to enhancing the health and wellness of the shut-in or otherwise isolated. Bringing a meal to share is a gift that reaps many benefits for both the giver and the recipient with residual effects felt by the recipient lingering long after the dessert is gone. That emotional connection, if only for a brief period, is one gift that has no price tag. It should be remembered that gifting in this way isn’t confined to the holiday season. It’s something that people can do with and for each other throughout the year.
Another uncluttering gift is that of helping a person actually declutter his spaces. Very often, those with physical limitations due to life long disability or folks in physical decline as a consequence of advancing age or illness, or who are experiencing depression, whether mild or full-blown clinical depression, which may send them to bed for days at a time, may not be able to keep up with maintaining living spaces the way they used to or the way they’d like to. Key here is not to bulldoze your way into their personal spaces; boundaries must be respected. Gently suggesting to your friend or family member that you are free to ‘help’ them dispose of 6 months worth of newspapers on the living room sofa is a start. Baby steps. Just keep taking the baby steps until the two of you are walking through the spaces with a growing confidence in letting go of ‘stuff’.
A few months ago, I spent hours cleaning spaces that I find particularly awkward and a tax on my energy. I finally bit the bullet and purged several base cabinets in the kitchen, taking the ‘just toss it’ approach. Spaces were emptied, vacuumed, scrubbed. What remained was reorganized. My goal, and so far so good, is to establish a rotation of use for various appliances - a metal insert slow cooker roaster is better suited for certain dishes while the ceramic insert ‘official’ slow cooker is ideally suited for other things. To avoid a lot of bending over and reaching into cabinets to lift out some heavy cooking appliance, I leave my favourite, often used ‘slow’ cookers on the counter. Those less or rarely used appliances are given away. Do you have such appliances in your cupboards? You know what to do! I’ve given away a few appliances that after many years of use and enjoyment needed to find another home, to be used by someone who enjoyed kitcheny things as much as I do. A dehydrator is about to be rehomed very soon.
If you have several counter top appliances that you’ve not used in months, donate them to your local Habitat for Humanity store or other such outlet that takes donations. I had no problem ‘letting go’ of the stuff in the kitchen cupboards. Up next, the ‘cubby’ under the stairs in the den. Slow n steady! Psst, there is a Coleman stove and two lanterns in there. Hmm! I am NOT a camper! Call first!
After a friend or family member has felt safe enough to let you help with decluttering, leave them with an uncluttering gift, perhaps a pan of lasagna, portioned and wrapped in single servings ready for the freezer. If you’re invited to join your friend for a lasagna lunch or dinner - accept! That date has potential to create another opportunity for you to take another step in helping with decluttering. Swapping an uncluttering gift with a period of decluttering also has potential for an added bonus - meeting new people.
Dropping off things you no longer need to various service agencies gets you connected to people with whom you may find a common interest. Those networking opportunities serve also to break into the isolation felt by and those who otherwise may feel they don’t ‘fit’ anywhere and with that comes improved physical and emotional health and wellness as time away from the ‘safe zone’ is increased. Lapses and lags in physical and emotional health often contribute to cluttering/hoarding, so being able to get out and about to engage in meaningful social gatherings may help resolve a lot of anxiety and dial back the ‘need’ to hang on to stuff. He who is isolated may start inviting people ‘in’ and the reasons for concerning behaviour may melt away.
Perhaps today will be the day you’ll explore a plan to share both uncluttering and decluttering gifts.
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
Saturday, December 3, 2022
International Day of Persons With Disability
Today’s the day! The International Day of Persons With Disability, proclaimed in 1992 by the UN General Assembly Resolution 47/3 is here again. For many, it’s a time of reflection – what did we accomplish this past year that allowed those who live with challenges to daily living to be more included, to feel more included?
This year’s theme is ‘Removing Visible and Invisible Barriers’.
“Rita Ebel, nicknamed ‘Lego grandma’, builds wheelchair ramps from donated Lego bricks in the living room of her flat in Hanau, Germany. The ramps contain several hundred of the small plastic bricks stuck together with up to eight tubes of glue.”
A wheelchair user for 25 years after an auto accident, Ms. Ebel saw a need and decided to do something about it. That’s often how a life-altering ‘fix’ to independent living gets started. She painstakingly pieces together community access, one Lego ramp at a time.
For folks like me, living with disability is a cradle to grave existence, a life that has to be planned around wobbly mobility in order to stay safe and well. As I age with cerebral palsy, I have noticed changes over the decades with regard to mobility; as well, proficiency was impacted by a transient ischemic attack last year. Biweekly physiotherapy provided by New Brunswick’s Extra Mural Program significantly enhances the quality of my life so I may continue to live independently in my own home, in surroundings that meet my needs. Everything as I need it ensures safety while aging in place. Providers of services like those available through the EMP are a huge boost to independent living to the since birth disabled and those new to how changes in health and wellness can impact how they conduct the daily business of living their lives. Every day, many of us have to tweak how we do things as our health and stamina changes.
In my 68 years of living with spastic diplegic cerebral palsy, I have faced many obstacles, mostly with regard to architectural accessibility being the big sticking point in my world. My home underwent many renovations to accommodate my situation, some of them were undertaken in advance of the implications aging would pose on my lifestyle. Grab bars in the bathroom; grab bars along a wall going down to the den where there is an open space on one side, with a railing on the other add an extra layer of protection. Just in case.
If you have an older neighbour who might need some guidance, perhaps you could do a walk-through and make a list of what may be needed to ensure safe independent living going forward. Being able to stay home, even if alone, is much less costly on health care dollars than admissions due to falls with subsequent expense of care at home.
International Day of Persons With Disability shines a light on what the community can do to enhance inclusion and safe participation. Anything that is done at the local level saves money in the long term. An emotionally and intellectually engaged person is a healthier person and less of a drain on health care dollars. Finding their place and finding their way requires power of the people. Maybe you’re such a person who would find common ground with someone who moves differently, talks differently, thinks differently, but enjoys company while eating, watching a movie, or going for a walk or a wheel to the park for some people watching. Companionship fills a huge void in the lives of many among us. Including you!
Attitudinal barriers were problematic during my secondary education as well as during my early work life until we, the disabled community, became more visible in the 70s and 80s, with 1981, being the International Year of Disabled Persons. It was also the year that Prince Charles and Lady Diana Spencer married and they acknowledged the accomplishments of persons with challenges to daily living with a request that donations be made to local charities instead of gifting to them.
Arthritis and other musculoskeletal problems, like cerebral palsy are the most common causes of long-term disability, making up as much as a third of all disability cases. Arthritis is probably the biggest single cause. Three of my siblings lived with the disability of arthritis and its concurrent complications. I live with osteoarthritis of the thoracic spine, often found in persons with cerebral palsy who do manage to learn how to walk. Life is a daily balancing act where I must gauge what I can do that’s necessary to maintain a healthy home and a healthy self and what I can no longer do. I try not to ask for help often but sometimes, it’s a necessary part of my world.
Discussing disability and other differences amongst us can be difficult, but it is in the differences that the foundation to empathy is found, adding support social-emotional learning, even in young children.
When I’m out and about, my interactions with both young and old are such that they lend themselves to bringing to the attention of the person with whom I am conversing a greater awareness of what living in my world is like. They leave our brief time together armed perhaps with a different perspective, with a greater appreciation of how they could be helpful to someone in their community, on the street where they live. A hand reaching out.
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
Wednesday, November 16, 2022
Aging pet parents have special needs
In the spring, two of my brothers passed away. Both were pet parents, with my younger brother Michael and his wife having a dog a several cats, including one with the disability of blindness. My elder brother, Ian, and his wife had a cat. When they passed away, their pets had one surviving ‘parent’ to meet the daily needs of feeding, grooming, time and attention. Their pets also had a person who loved them and knew all their quirks in the home where they spent their lives. Pets notice the absence of their people and their expressions of grief are real.
When I die, whatever pet(s) remain will have no such option and will need a ‘parent’ and a new place to live which involves significant adjustment to entrenched routines.
In my Last Will and Testament, I have designated the Executor of my Estate, my nephew, as my pets’ ‘parent’. As well, I have drafted a Pet Care Plan In Case of Emergency. It’s in an envelope secured to the front of the refrigerator in the laundry room. It outlines, in detail, the routines of Miss Lexie and Mr. Malcolm, from what they eat and their snack habits to their morning and evening routines. As well, where and how they sleep are also noted. Those things are important to a pet’s security. Like children and older people with various degrees of cognitive decline, sameness is vital to emotional health of a pet.
Trixie, my niece in Montreal, shared a snippet from her life with a new friend, an 82 year old lady from her neighbourhood; the woman’s daughter posted on a pet rehoming group that her mother had to give up her dog. As the story was unfolded, my niece’s friend had a heart attack and could no longer care for her canine companion, Eddy.
Trixie is Mom of 3, and she and her youngest, Ronan, still at home, enjoy a positive relationship with their own dog. As Trixie observed, her friend didn’t want to give Eddy away, she just couldn’t completely meet his needs, which included walks. The dog, as it turns out, was not only a bit of a handful, he was a total character. And so, Trixie and Ronan stepped in and since July, they’ve been walking Eddy. A match made in heaven as the stars aligned; a working Mom and her son helping an elderly lady in the community who needed some assistance. As it turns out, their senior bestie is also great fun to hang out with. A problem for one in need found a solution in another willing to reach out.
When I was my niece’s age, early 50s, I had the same thoughts with regard to seniors struggling to have basic day to day needs met within the community, whether it’s dog walking or transportation to get groceries or meet doctors’ appointments or even just going out to lunch. Aging imposes limitations that we often don’t think about until they creep in, one by one, layer by layer.
For many years, I lived in downtown Fredericton with my two cats and a pair of terriers, a Cairn and a Westie, in the ground floor apartment of a lovely spacious Victorian with back yard; I walked the dogs myself, as I moved about with crutches, a terrier attached to each one, going to Wilmot Park. That was exhausting, so I hired walkers, three sisters, the Webster girls, Allison and Jessica and Eleanor. The daily, 5 days/week care and attention the girls provided, meeting the needs of my terriers was a real boost to my own emotional health and contributed to me being less worried about being able to properly care for them by ensuring they enjoyed the fun part of a dog’s life. Walks!
As with many youthful ‘first jobs’, the girls aged out of their dog walking gig and moved on to bigger and better things. I transitioned to using a wheelchair for longer outings, which was perfect for the dogs with their ‘social butterflies’ meeting and greeting as they went, allowing me to safely go out and about in the city without fear of being pulled over -- always a concern when I walked them while using crutches. The chair was ideal as the Westie was getting on and slowing down, tiring after a few blocks. Securing her on my lap with the seat belt was an ideal solution which allowed us to enjoy an outing for a longer period, with the young Cairn running along, attached to the arm of the chair.
My current terriers don’t have the same outside experience enjoyed by their predecessors. As my health situation changed it was prudent for me to stick closer to home so the dogs are tethered to a 50ft cable off the garage and also have access to a pen via an enclosed porch, accessed from my office/tv room at the back of my home. Occasionally, though, I’ll take them out on the mobility scooter for a brief outing and change of scene; in an ideal world, they’d have a walker. There are several dog/pet care services in Fredericton and elsewhere that cater to the needs of aging pet parents. Were my circumstances different, I’d be availing myself of them.
For now, Miss Lexie and Mr. Malcolm are the perfect prescription to my continued emotional and physical health. They keep me keepin’ on.
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 carmacrockwell@xplornet.ca
Tuesday, October 18, 2022
When I grow up I want to be a ....
“What do you want to be when you grow up?” is a oft-asked question, whether posed to a group of 4 year olds playing with Legos and trucks or a youngster choosing a book from his personal home library. Children playing with blocks being creative with design and those little ones who like to read or be read to are already filling up their ‘ideas’ bank with things they’d like to do and be when they get old enough, big enough, smart enough. Reinforcing the value of constructive play with one or two others or organizing a Lego house building contest is a great way for children to work collaboratively from a very young age. Reading circles also provide children with opportunities to learn and share ideas. Reading contributes to allowing people, young and old, to make informed decisions about what they want to be and do when they grow up, so it’s vital to encourage it. Not all children are suited to the university track, that sought after goal of their parents and grandparents before them, but they can still be productive, forward moving citizens doing something quite different, that’s suited to their temperament and interests.
The opportunities available to children while they are young will shape options available to them once they become part of the community on a more consistent, daily basis starting with schooling, from kindergarten going forward.
In a recent newspaper article I read about curriculum changes to be made within New Brunswick schools to allow for more flexibility and choice. Having access to learning opportunities that appeal to aptitudes and interests has a staying power not always found in ‘sit down a be quiet’ methods of teaching; the latter model, in its rigidity, tends to set the stage for students tuning out to the instructor and that in turn is reflected in poor showing at exam time. The interest in material presented just isn’t there. Something had to be done. Still more needs to be done. Bring back shop, home economics, business education courses -- all those classes where hands-on learning drives the lessons. Co-operative learning and apprenticeship within the community are other ways to strengthen ‘staying power’ of the student’s in school experience. Children moving from kindergarten to first grade benefit from lots of hands-on learning which inspires them to drive their learning, whether through reading about specific topics of interest or venturing out into the community to become a part of groups involved in uplifting community spirit.
For the most part, the growth of a child becomes a community project with many hands involved in shaping the path to young adulthood and beyond. For that reason, it’s imperative to pay attention early on, noting those subtle cues that tell you the story of the child’s learning style. In that way, adults can tailor their approach to match the skills of the child, setting a path for the youngster to thrive and move forward with little frustration to success.
When asked many children will say they want to be, in order of preference, a doctor, a teacher, a scientist or a baker. The latter is a skill that every child should learn as soon as they’re able to toddle. Helping in the kitchen is an education in itself. Baking and cooking incorporate listening skills, reading and math skills and the skill of co-operation – working with one or more to achieve the end result; the finished cake, batch of cookies or hamburgers. Fruits of the labour are enjoyed by all and knowing their efforts are appreciated, as they should be, inspires children to do it again, to even ask to do it again. And that is exactly what a teacher wants and needs to see.
When I was growing up in rural NB, I lived in a community where families were large; I’m number 7 of 8. Following trends, children often chose professions in keeping with the work life experience of their parents. Typically, mothers worked inside and around the home, sustaining a stable home life for her husband and children. As children grew in maturity, they took their place in sharing load. That’s the way it was. All manner of interchangeable skill sets were accumulated that allowed children to make decisions about future plans that were more reality based. Children who wanted to be Superman when they were 4 grew into the idea when they were 12 that they wanted to be a police officer when they grew up.
My late father was a doctor and my mother was a teacher. Before he was a doctor, though, Dad was a teacher. When he was in med school, there were already two children, an older sister and brother; over time, 6 more ‘rug rats’ joined them. None of us went on to be a doctor but a few teachers tumbled out of Clan MacInnis. I’ve been a bit o this and a bit o that over my life. With the passage of time, the stuff that defines me as a ‘productive’ citizen got rolled into one job; the job of being me – a listener, a counsellor, a reader, a writer. I’ve been writing for over 30 years and with this publication for 10. Living what I know, as I age with disability, allows me to educate parents out there who may be raising little ones like the child I used to be. There’s a place for us!
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




