A home of many brothers, and sisters, too

Yes, this is a family

A few years ago, I read an article that caught my attention with the opening comment by Maureen MacEwen, Provincial Co-ordinator for P.E.I. Child Protective Services — “Canada is having a foster care crisis, with so few people willing to serve that one province is preparing to house infants in group homes if necessary.”A sad commentary on how significantly this ‘social program’ has deteriorated, but it’s been simmering dry for years. It was inevitable.

In the 70s, ‘group home’ was a label, a name assigned to a home where the ‘mentally retarded’ lived. Over time, terminology changed but the prevailing attitudes still existed. So while it’s all well and good for the government to consider placing infants who are in foster care into ‘group homes’, there should be serious thought given to a long-term plan. Children, no matter the age, cycling around the foster care system from one ‘home’ to another, weeks at a time, months at a time, a few years at a time, has never been the ideal. Lack of continuity of care does cause emotional trauma as has been demonstrated. There is no need to throw money at more studies to prove the proven. Put the money where it’s needed - into HOMES; not just structures to ‘house’ children in need, children in crisis.

Children go into care for many reasons — it’s a sad reality that many cannot go back to the house where the biological parent(s) live, but the system sometimes seems to miss the mark when stepping in to remove a child or children from the biological family. Certainly, the child’s welfare is critical, but there needs to be a stronger emphasis on correcting what has gone wrong with the parenting/caregiving. Do the parents want help? Will they accept help that’s offered and follow through and not just go through the motions to ‘get the kid back’? A child is not a piece of property to be passed around like an ugly piece of furniture no one really wants, but someone will take it, even if only to fill that corner of the living room until something better comes along. Again, a sad commentary on our ‘throw away’ society. 

If parents in crisis were buoyed up to the point where they could stand on their own, moving forward, there’d in all likelihood be fewer children ‘in care’. If, without judgment, they were shown how to guide their children with less stress and less mess, the entire family dynamic has potential to change and self-correct. Not unlike many families outside the view of government scrutiny. Lives of families all across Canada go on, day after day as Moms, Dads, brothers and sisters live, work and play and parenting styles and welfare of children are not questioned. That’s the way life has rolled along for centuries.

For some families, something gets fractured and outside help is needed, sometimes court sanctioned. Given that children learn what they live, parents with proper tools have a chance to break a cycle and with that the notion of the ‘bad kid’ label fades. When parents who want to learn and grow see the fruits of their labour manifesting in the forward-moving behaviour of their children, all are winners. Instead of the ‘system’ patting themselves on the back, social workers and others need to respectfully acknowledge the efforts of parents and children in crisis. There’s too much focus on what’s wrong and not enough on what’s right and good.

If the parental unit is irrevocably broken, then a long-term ‘forever home’ elsewhere would be pot of gold for children in need. We hear so much about animal shelters wanting ‘forever homes’ for dogs and cats available for adoption. If children cannot be adopted, for whatever reason, would they not be better served in long-term home life situations, rather than short-term ‘foster’ care? Would studies to look into repurposing vacant buildings/heritage properties across the country have merit? 

Imagine being in a foster home and 3 days before Christmas, you’re moved. No explanation. Then April rolls around and you’re moved again, out of the district, with a different school Starting over. Then again in July! Multiply that scenario by thousands of kids every year, and we see a very serious problem. No wonder foster kids have a difficulty with trust and can’t settle in to ‘good’ behaviour, often falling onto the path of drug addiction, promiscuity, unwanted pregnancies, as history repeats itself. It’s time to change the care plan and explore the potential for success of a home for ‘a group’ - a group of youngsters that can, with supports become a family. “He doesn’t look like me, but he’s my brother!” Homes such as this would be not unlike the L’Arche community of group homes, but tailored for children from the very young to late teen who need long-term ‘Mom and Dad’ guidance. Think of the possibilities. 

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

Caregivers need care, too. They're exhausted.

“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.” These words of E.M. Forster resonated as I watched the documentary about Linda Rondstadt, whose music I continue enjoy decades after she came on the scene.

Ronstadt made the decision not to take the medication used to treat the Parkinson’s disease with which she was diagnosed in 2013, though she’d been symptomatic for several years, noticing changes in her voice as far back as 2000. The drugs she was prescribed caused nausea and vertigo, which is a risk one takes in trying to to tailor a regimen of currently popular medications to treat conditions that alter physical, emotional and mental health. 

Unfortunately, drugs used to Parkinson’s and cerebral palsy often have side effects that significantly impact daily life, setting the stage for a life that is not as enjoyable as it could and would be without being too sedated/medicated. Like Ms. Rondstadt, I am not a shut-in. I prefer to think of myself as ‘snuggled in’, particularly in winter months, when mobility is hampered by ice and snow.

Ms. Rondstadt and I also have another thing in common — we have to pick our battles, deciding what we want to accomplish on any given day. Living in our worlds is exhausting. Make no mistake about that. She’s advantaged by having access to lots of hands on help with the day to day, while here at Chez Rockwell, I do most on my own, under the watchful eyes of two aging canines. If I fall down and go boom, who are they gonna call?

The diagnosis of progressive supranuclear palsy, a severe form of Parkinsonism with brain wasting, ultimately found its way into Ms. Rondstadt’s medical profile. My eldest sister, who passed away in 2012, lived with PSP during the last several years of her life and cost of her care was significant. PSP is a cruel disease. In many respects, she was far more disabled than I ever was. Thankfully, my healthy lifestyle has contributed to my continued independent living.

As we chart a course for what’s to come in 2020, it is my hope that the medical community, from doctors and nurses to providers of at home care adjust their vision to include the critical need of support for caregivers who happen to be related to the person requiring extra attention and assistance. It’s no easy task being the spouse, partner or parent of a person living with disability, particularly for parents raising children with special needs. It’s expensive. Very often, the costs associated with caregiving come out of the ‘family pot’, compromising the financial health of the rest of the household. When children age out of systems of care that were subsidized, it falls upon parents and families to pick up the slack, so they often have to cut back in other areas of daily living. If there are other children in the home, their accustomed lifestyle is often the first to get cut. Not fair.

Our government needs to rethink what caregiving really is and that paying family members who provide care is one very significant way they can let its citizens know that they are of value and their lives matter. The physicial, emotional, mental and financial cost of caregiving is significant and in the end it’s counter-productive when what a family member is doing to help another is actually hurting themselves. No winners. A monthly allowance provided to each family who currently provides home care to a family member who cannot look after his own needs due to illness, condition or disease, would go a long way to reducing the overall burden on systems across the board. Think about it. Do the math. Many countries around the world have developed schemes that provide familial caregiver allowances.

As well, the government must be mindful of one key point. In reality, there’s no such thing as government funded; it’s tax payer funded. People are only asking for what they rightfully deserve as contributors to the government pot that assists everyone. You’re seeing the logic, right?

Caregivers are exhausted and they don’t often reach out, isolating themselves to the point where no one outside their daily world has a full appreciation for what’s really going on behind closed doors. The daily routine of caregiving, day in and day out for years, for decades, takes a toll. Financial packages available to families in need is the right thing to do if our society hopes to flourish into this coming decade and beyond.

As the days of 2020 start rolling out, perhaps all those local, provincial and national programs of health and wellness support will stand on common ground and finally DO the right thing for those who need a hand up. It’s time.

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

A clear vision ahead for happiness in 2020

Photo: Andrew Seaman/Upsplash

As we approach this new year, 2020, full of hope and promise, I find myself reminded of what a major effort it is for so many of us to ‘just keep on going’; to be happy. Persons with orthopaedic disability, who are able to function with some degree of mobility, exhaust themselves physically, emotionally, mentally and spiritually each and every day, perhaps questioning the ‘why’ of their existence. Caregivers are struggling with their own demons of fatigue, frustration, fear, anger, and even resentment. They can’t give up. They can’t give in. In their minds, failure means defeat. How wrong they are!

Government systems of support must take a closer look at what the long term, real needs are for both those who require in-home help on a daily basis and those who provide it — doctors, nurses, health professionals generally, teachers, pastoral care workers. Respite for caregivers, often a parent or sibling, is paramount. They are the often ‘tapped out’ resource that never get enough acknowledgement or ongoing support.

From early on, if I was to be a happy person, accepting myself as I was would be necessary so that I could develop the gifts I may not otherwise possess had I not acknowledged that my ‘different’ness was nothing to be ashamed of, to wish away, or to ignore. In reality, ignoring it was never an option. I liken my differentness to a companion who will be with me forever; a part of everything I did, from rising in the morning to going to bed at night. My companion’s name is cerebral palsy Perhaps, in large measure, my companion would define my character, shaping the stuff of me that would ultimately be the best of me. 

I had to accept that my life was going to be different --- not in a negative way, not special — just different. I certainly never wished to be someone else, though I did wish that I was more able in terms of mobility, as in being so, I’d have possibly been more readily included, particularly in the formative years when children are establishing bonds and social networks.  In being more physically able, my career choices would have been expanded, but would things have gone differently? Who knows? There were and are always going to be things that I will never do by virtue of living with cerebral palsy. I don’t use the term ‘have’ when speaking of my ‘companion’. 

Too often, people define happiness based on what others bring to them or share with them, whether it be the tangible or the intangible. Sitting back and waiting for happiness to come to us is wasteful of time and energy which could be better spent creating our own happiness and simultaneously spreading that  happiness around us, to siblings, to friends, to colleagues, to a spouse/partner. Happiness flows out, flows around, then flows back after bumping about to touch others; a complete circle. 

We who live with limitations to full participation in daily life learn ways to participate and create a unique happiness; this is, of course, contingent upon whether our intellect is intact and if we have even a limited awareness of our surroundings. It’s long been acknowledged that even the most profoundly disabled, in the absence of full cognition, can still experience happiness. Happiness is not something that should be weighed or measured, as what makes me happy may not make another happy. It should not be our job to ‘make’ another person happy – to position ourselves as a ‘happy maker’ has potential to be exhausting; ultimately, it may well destroy relationships. 

Frequently, I have heard people say that they wish they were happier, which begs the question – what do they believe could or would make them happy, happier? Sadly, in this ‘stuff’ driven age, people assign a happiness quotient to the quantity of their accumulated ‘stuff’ – I was almost a victim of that thinking until I abandoned it years ago. Certainly, I enjoy an array of creature comforts, some by necessity to make my life easier as I age with a number of disabling conditions. I also enjoy a number of things that don’t fall within the necessities of life purview – fine scotch, fine foods, my books and music, pleasant décor; as with all things, never anything to excess. To coin an oft-used phrase – all good things in moderation. That has defined my life from the outset with regard to establishing my selfhood, my personhood – moderation. 

As you chart your own course going into this new year and beyond, keep your eye on your own prize. Your happiness is inside you — take some time to find it and help it grow! 

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