Saturday, August 24, 2024

Adversity gives birth to talents

 

Photo: Pexels

Did my adversity, or what I call a life challenge, plant the seeds of my talents, of my tenacity to press on in spite of? As I look back on my life and reflect upon where I started and how far I’ve come, I have to say yes, my limitations to physical mobility did, most assuredly, develop my talents.                                                                                              

I have a talent for writing among other things. That particular gift has allowed me to take on the role of mentor, both in person, early in my growing up and work life and later on, as I move to the online world to share what I know about life and living with disability. 

Certainly, as to the writer me, genetics played a role; my father had the gift of words, as did his late brother.  Both physicians, 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. Lucky me! I have a signed copy. He and my father 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 30 or 40 years ago, we have opportunity explore many avenues of interest at the same time, 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, even in smaller communities, that weren’t even thought of when I was in grade school. Endless possibilities for multiple opportunities. 

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

Sunday, August 11, 2024

Asking for help enhances community spirit


 Photo: Unsplash

As a senior, aging home alone with multiple disabilities, including since birth cerebral palsy, I have developed an expansive ‘tool kit’ to meet the daily challenges of aging in place safely and well. To be uprightly mobile at the age of 70 is testament to the reality that what I’m doing is working; I have a network of friends who, as they are able, assist me with those things I cannot do on my own. I’m all about reciprocity.

Emotional unwellness, mental illness, mental instability, emotional instability - label after label after label with all having a common underpinning — a thinking, feeling, flesh and blood human being in crisis. Also in crisis are those near and dear to the one trapped in a ‘cage’ where he may see no escape - rather like the hamster on the wheel going nowhere fast.

This is often the plight of parents, very often the mother, with emotions raw from years of frustration, as they cared for  disabled children, from infancy through adulthood — ‘What will happen to John when I am no longer able to care for him?’ What will happen to my child when I am dead? Who will look after him the way that I did, making sure he will be well and happy?’ 

Lots of questions with many possible solutions, but none may suit Mom. That’s why it’s so important to have a well thought out daily plan outlining everything about her son and his day. What he likes, what he doesn’t like. Listening and hearing with respect is critical.

There’s been a lot of discussion, along with many recent newspaper reports of plans to meet the needs of seniors in care. What about senior/elderly parents caring for  adult children with disability who require care 24 hours a day, 7 days a week, year after year. Both the carer and the cared for are at risk. They and their needs are sometimes inextricably joined and with proper supports, both could stay in the family home, continuing to be comforted with the familiar.

A mother of 80, without ready access to familial connection, trying to ‘do it all’ for her profoundly involved 57 year old child often chooses to isolate herself so that no one will fully get to see what’s going on because she is afraid. You would be, too! 

The adult son will always be her child and she doesn’t want anyone to see that she’s failing. What she may perceive as failing is not at all the case. What she’s experiencing is the not unexpected consequences of pushing herself beyond her limits of physical, mental and emotional tolerance. In not allowing others in to see, to avoid feeling bulldozed or intruded upon, it is near impossible to gauge her real needs and the needs of her adult child.

Frankly, a mother  who has demonstrated that degree of commitment to caring for an adult with disability to ensure that he doesn’t ‘end up’ in care has to be applauded for staying the course when perhaps they shouldn’t have. Mom must not be made to feel that her child with disability is being abandoned if a discussion is broached about having him live in a special care home or a nursing home.

Those responsible for developing nursing home care plans for the ‘differently able’ need to engage in town hall meetings so that they get real sense of what goes on behind closed doors in the family homes within that community and be respectful of the wishes of elderly parents when it comes to adults with disability. Sometimes, the ‘systems’ across this province and others are not fully aware of just how many adults with disability are being cared for by elderly parents. Learning about them before a catastrophic event alters their living arrangement is critical. The needs of caregiver are equally as important as those of the cared for. Visiting clinicians often see and will note concerns but they can’t do it all.

The family doctor must take care not to be heavy handed with advice about ‘what to do with John’. When mother and child are treated as a single ‘case’, with a view to having them both transition into ‘special care’, things may be easier. The family dynamic may stay somewhat intact and Mom is more willing to comply with new ways of doing things.

It may not always be possible to meet all the daily needs of the adult with disability going into care but the critical ones, in my view, would be those that involve physiotherapy, occupational therapy, and possibly speech therapy, taking into account personal preferences of the client. Maintaining the familiar with regard to physical activities of the day will, in large measure, ensure stable emotional and mental wellness.

An adult with disability being cared for by Mom, Dad or a sibling has a routine that has been ‘set in stone’ for years; as example, certain food preferences, twice daily physiotherapy, favourite television programs like to be watched, favourite music. In fact, lots of adult children with disability like to be read to. Will those things be carried on in the nursing home environment? To suddenly abandon them will cause no end of frustration.

Compassionate care enhances quality of life within community. A win-win.


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