Where do I go now?

 

 Photo: Unsplash

A hot-button issue that affects nearly every Canadian family is that of long-term care for seniors and older adults. Then, there are those older adults, such as I, with since birth/long-standing disability warranting a different approach to care than those who age in ‘typical’ ways. In this age of ‘inclusion’ politicians must be aware of the language they use: just say NO to terms like suffer from; afflicted by; patients; handicapped; differently-abled; challenged (physically or mentally); wheelchair-bound. 

Politicians should be asking how care can be provided to persons with disability who may need help with everyday tasks like shopping, cooking, eating, bathing, dressing, going to the bathroom, moving from place to place. There needs to be ongoing dialogue with those on the front lines of health and wellness — doctors, nurses, physical and occupational and other such therapists; providers of mental health counselling, and so on. It’s not just about the roof over our heads — functioning with a condition or disease that affects how independent daily living is accomplished is no easy feat!  Policy makers and implementers of ‘care plans’ should endeavour to be on the same page and move forward mindful of one thing - RESPECT for the person needing or seeking assistance. 

I’ve been living in my home since 1991 and on my own since 2007, when my husband passed away. To date, I am doing very well and able to maintain the day to day with no help from outside agencies. I have several good friends who assist me with picking up groceries and ‘deep’ house cleaning a few times a year. Housework is exercise and since I ‘know’ the spaces, I feel safe in them. I’m all about reciprocity. Bartering is alive and well in my world.

Given that ‘home is where the heart is’, it’s cost effective in manifold ways to ensure that our elders are able to live in their own home as long as is practical and do-able. The cost savings both to the senior and to the government sponsored care providers is significant and any way in which the senior voter can save money should be the goal in view of our astronomical nursing home fees.  Safety in the home is paramount, and case by case, seniors and extended familial care providers  should consult to determine what needs to be done to the home and in the home to make it safe in the long term.  We don’t want to fork over a piece of our financial pie to the government until we absolutely have to.

We with life-long disability who are aging in to services for seniors expect assurance that our ‘unique’ needs can be addressed and that we won’t be patronized because the ‘able-bodied’ politicians don’t know how to speak to us or about us. Above all else, we’re human beings with pretty much the same wants, needs and desires as those who don’t live with disability. People first. Round table discussions with regard to the ‘bucket list’ of prioritized needs would be valuable as politicians develop their platforms and move forward to ‘get it done’.  The focus should be on long-term fixed needs that are shared by many, not just a few token frills to score points. 

Candidates who are able to eloquently address questions about funding long-term care, prioritizing community-based services that keep people out of institutions, and giving individuals with disability control over their own care services will grab the attention of voters who live with disability. The aging population will make long term and skilled nursing care more and more important over the next few years and decades. As well, more specialised care may be a requirement when planning for the future long-term nursing care needs of those with pre-existing disabling conditions outside the implications of aging and age-related decline.

So, in addition to learning about what seniors need, politicians need to educate themselves about what ‘special needs’ seniors require; critical as safe accommodation is, many of our seniors live at or below the poverty line and often cannot afford to modify their homes to make them safer. Those concerns must be addressed and since most required items are one-offs it’s not likely to ‘break the bank’.

Repurposing decommissioned schools and hospitals might be a way to address some sort of co-op housing; again, thinking outside the box, while at the same time fully including those who will be availing themselves of the services planned for and ultimately provided is critical. Recent articles have addressed the popular practice of providing adult day care; secondary to that should/could be development of respite (weekend) care schemes for persons of advanced age who may or may not live with a pre-existing disability.  Blending of populations is often seen  as way for those who are able/adept at certain skills to be buddied with those who are ‘less’ able. An effective matching via the buddy system is also  a way to improve mental/emotional health. Nowhere is this more critical than with the senior population who are sometimes isolated from the mainstream. An emotionally healthy, mentally and intellectually engaged senior is invariably going to be less of a drain on the financial resources of ‘the system’ - they’re too busy to get sick! 

Give me a home that gives me quality care, and I’m so there! Look for me in a few decades!

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

Defining moments in parenting

As with many deficiencies to ambulation, how we alter the landscape at home and at school often determines how well a child will adapt. UNSPLASH

It’s a boy! It’s a girl! Twins!!  Each with 10 fingers and 10 toes and peach fuzz blondish hair for both.  The girl is examined and all seems to be well; rosy cheeks, a hint of a smile on the lips. She’s sleeping, with arms outstretched, legs outstretched. Her brother is restless, crying. Wait a minute --- something’s not right. In fact, something’s terribly wrong! The legs seem twisted on the boy, his toes curled;  his fists are clenched and won’t release. What is going on? 

The ‘perfect little family’, a boy and a girl arriving as a 2 for 1, with the months leading up to ‘the day’ being unremarkable in that there had been no identifiable problems. How could life be so cruel? Or was it? Let’s stop and take stock. The most important thing is being overlooked --- both babies are ALIVE. They are here and now! How is that cruel? After examination and consultation, it was determined that the boy may have cerebral palsy. Passing hours and days would reveal more.

Life is about to take two new parents and two brand new lives on an amazing journey to explore feelings that the Mom and Dad never knew that had – until now! What’s going to be added to the mix, not just for  these new parents, but for every single person involved in the lives of these little persons they created is something no one expected — an attitude adjustment.                                                                                               

I chose not to have children as multiple run both sides of my family; with my luck I’d have ended up with a six-pack. I was comfortable, in my teens being the aunt who played trucks with nephew and Barbies with niece. They didn’t care that I was a wobbly walker. I was great at playing board games and reading stories.

I’ve come across many families where there are twins with one having  cerebral palsy, sometimes very mild and such that it won’t significantly impact the child’s daily living and learning. In other case, however, the implications of cerebral palsy are profound and life altering for both the child and for ALL those around him. As with many deficiencies to ambulation, how we alter the landscape at home and at school often determines how well a child will adapt. Coddling is not an option. Just say NO to the C word and you won’t have to deal with that B word! This is especially critical when the child goes to school, whether the informal infant school or kindergarten. The importance of grade one preparedness cannot be stressed enough. Twins will make life interesting! 

How parents prepare their physically or intellectually challenged child at home will carry significant weight with regard to life ‘out in the world’.

How we perceive others is often borne out of how we conduct our own lives and our tendency to have certain expectations of those around us, those we draw into our circle based on how well suited they are to US. What is called for when parenting or interacting with children who have ‘special’ or ‘different’ needs is how we must adjust OUR attitudes about them, about their circumstance and about how they will respond to the challenges of living in a world that will never fully ‘fit’ them and what we can do to smooth the path.  As parents relinquish parts of their ‘job’ to others, namely teachers, educators must fully embrace the notion of nurture and nature. It may take some time to get a sense of a child’s strengths so it’s critical not to focus a lot of time and energy on deficits.

It’s been said that I’m in a rather unique position when it comes to speaking of issues surrounding cerebral palsy; that is true as I’ve had almost 70 years of practice and am still at it. Each day has a different set of challenges for me as I age, and the same will be true for ‘challenged’ children growing up in today’s world. Even with advances in modern technology and a range of teaching and learning tools, the emotional impact of parenting a child with disability is universal. It hurts the heart! The emotional impact on the child living in and with the disability is such that those on the outside often misinterpret behaviours, triggers, ‘signs’.  This is especially true for teachers and others involved in interactions with the child outside the home.

My message to teachers is - don’t assume anything. What you see in terms of a particular behaviour or a sequence of behaviours of the child who lacks expressive language is often misleading and misconstrued as ‘bad behaviour’ or ‘brattiness’. Look closer! The non-verbal child, especially, is beyond frustrated at not being able to articulate wants and needs. Intellectually intact children with mobility disorders have challenges that may impinge not only on learning but peer interactions, so it’s necessary to pay attention to those ‘hidden’ messages their behaviour may be communicating.

For myself, when I was actively involved in training and educating children of various ages, I was then as I am now, an advocate of the buddy system — pairing an ‘able’-bodied child with he who requires a hand up. Parents must allow themselves to simply step aside and watch the youthful relationships develop and see where living and learning takes their little ones. Teaching and learning is for life!

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