More than ‘just’ a father. He’s a DAD!!

Happy Day After Fathers Day to all the ‘special’ fathers out there; father’s who are Dad to children with ‘special needs’. 

Lots of Dads are all about being fully engaged in their child’s life but it must be bittersweet for fathers who are Dads to children whose lives are charged with struggles, day after day. 

Dad didn’t get the baby who would grow up to play tennis with him, or play touch football or baseball, or any of those activities that embrace physicality. Some are Dads to children whose intellect is not fully intact, so there’ll be no chess games, no board games, no computer games that require any degree of proficiency.

 Lots of Dads will never experience their child rolling over, crawling, sitting up, self-feeding; none of those milestones. But there is one thing that makes it all worth it — that big smile for Dad! And the laugh! As language skills develop, and for lots of kids there will be language, there’s the lively chatter with Dad about all kinds of things. Though they may not ‘play’ sports, lots of non-ambulatory children love to watch sports. Nothing is off limits. A Dad is a Dad is a Dad; and so it goes. Go with the flow. Go with what works. Life is good.

Often Mom who is out there, front and center, with the doctors appointments, the meetings with teachers and aides at school; networking with local play groups to find a spot for her little one, where he can learn and grow. 

When possible, encouraging paternal involvement is critical to the family dynamic, as children need both models in their lives. Dads are involved, but not always so ‘out there’. We have some single fathers who’ve come away from broken relationships and act as primary caregiver, fathers who’ve adopted children with disability without ever having been married or in a committed relationship. Some of the guys are in long-term, stable relationships with another who participates with co-parenting. All hands on board. All hands welcome, and all hands very necessary.  They celebrate Father’s Day EVERY day. Every day is a gift. For the medically fragile child, tomorrow is not a given.

Some fathers may distance themselves by working long hours which unfortunately keeps them out of the loop with regard to medical appointments and the like, where information  which would help them better understand their child’s medical status is disseminated. They must be encouraged to participate in that realm, even if only minimally. 

Lack of empathy from medical professionals sometimes makes it difficult for parents, mothers and fathers, to come to terms with the future and possibly overlook the potential that may lie within that little person who has just come into their lives. Unwittingly doctors are imposing their own belief system into a situation where it has no place. Their job is to address the health/medical needs and leave the love and ‘day to day’ of the child to those who are the most important – the parents and the family. Just as they have opportunities to encourage mothers of medically challenged children to embrace Mother’s Day, with a few kind/caring words, they  similarly have an opportunity to encourage fathers to embrace their ‘special’ day. Not only would an encouraging word, or six, from a doctor or others involved in the child’s life be welcome — it’s necessary.

What becomes of the relationship of the father, the Dad who will never have that ‘traditional’/typical relationship with child, especially a boy child? What can he do to ensure that he gets to know this little person who may never be able to articulate or demonstrate a knowing of his father in any tangible/visible way? What must never be ignored is that a father getting to ‘know’ his child with disability will ALWAYS be meaningful. A father who sits quietly in a dimly lit room with soft music playing, rocking his son who cannot see, cannot hear, cannot move, is meaningful, has value, and creates memories. He’s enjoying a special ‘Father’s Day’. Non-disabled siblings witnessing this father-son exchange are learning a valuable life lesson as well – empathy. As families plan for various occasions that call for celebration, inclusion of he who is unique, he who is differently able IS possible.

Fathers of ‘special needs’ children must accept and allow themselves to be ‘special’ too. Special every day, in the knowledge that they chose to be ‘in it’ for the long haul, no matter what each day brings.

As well as a few things  for Dad, I encourage families to have children’s toys on hand to celebrate Father’s Day; after all the day is about the kids, too. What a fun way to take the sting out of the  ‘never will be’ father-child moments — bopping each other on the head with plush toys that squeal or blowing bubbles at each other. Get the camera ready for the close-up.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Age is no impediment to the need for hugs n cuddles

Over the past few decades, the manner in which care has been provided in the nursing home/retirement home setting has changed markedly As people are living longer and with advances in modern medicine combined with  travelling on the ‘information highway’, connecting with family and friends far and near is easier. Social connection, whether in person or via the internet, boosts emotional health and wellness and concurrently boosts physical wellness. This age of technology is also pivotal to enhancing quality of education and quality of life for both the very young and the very old.

I was thrilled to read about the cuddle therapy dolls that were delivered to the Nashwaak Villa in Stanley, NB after they had enjoyed a two week trial period with Avery and Aubrey in February of 2016. 

Philip Giberson, my childhood neighbour from the time I was born in Bath, Carleton County, until I left home in the early 70s, resided in this beautifully appointed elder care facility from 1 December 2013, until his passing on Wednesday, 31 May 2017. He’s pictured with Aubrey and Avery during one of their early visits; his smiling face speaks volumes about the value of ‘cuddle therapy’ for seniors.

Since Aubrey and Avery were such a huge hit with so many of the guests at Nashwaak Villa, the decision was made to adopt Gracie and Jack in July of 2016, who were later joined by Noah and Emmy in March of 2017. If they acquired ‘cousins’ all over the province, what a party that would be!

Resident-centered care acknowledges the need for guests to be treated as people first, with respect and dignity. In many ways, the patient-centered model diminishes personhood. Our elders are much happier when they actively particpate, as best as they are able, in decisions about how they will spend their days, from the time they wake up in the morning until they retire for the night. Their right to choose is critical.

The guests at Nashwaak Villa are treated to the daily antics of feline pals who have their own room. Cuddling with Noah, Emmy, Gracie or Jack along with interaction with the cats in residence, PJ and Callie, have a significant relaxing effect on seniors, especially those lost in dementia. Holding a small breathing creature seems to wake up something deep within those lost memories. Cats, just like dogs, seem to know when they’re needed and in a place where there are lots of people to visit, they dutifully make their appointed rounds, satisfied with a hug and maybe a piece of kibble. At the NashwaakVilla, the cats have sometimes been present as a guest passes away. They truly are knowing.

Pet therapy and cuddle therapy with infant-like dolls have made a huge impact on the lives of the folks at the Villa. Cost-free therapy with the side effect of smiles, laughs, happiness and calmness. A significant long term benefit is the reduction in the dispensing of anti-psychotic drugs. 

Another plus for is the kids summer camp, which brings together young and old for an array of daily activities which are lots of fun and engage both generations in meaningful and memorable exchanges. Five different camps, representing different age groups, are organised from July 10th through August 25th, providing a range of age-appropriate activities in which Villa residents participate. What a wonderful way for a mixed age group to spend quality time together. 

The Nashwaak Villa in Stanley and the Carleton Manor in Woodstock are but two ‘homes away from home’ that have adopted the Planetree model of resident-centered care. The proof is in the pudding when one enters either of these fine care facilities. The atmosphere is welcoming and  alive with activity, with the guests, as they are able and inclined, engaged and engaging.

In 2015, Carleton Manor was awarded Planetree Bronze Recognition for Meaningful 

Progress in Resident-Centered Care. Carleton Manor was the first health care organization in New Brunswick to be awarded Bronze-level recognition since Planetree first introduced the recognition level in 2012.

Planetree is named for the tree under which Hippocrates – the father of Western medicine – taught students. It was founded in 1978 by Angelica Thieriot, who used her experience battling a viral infection to develop a system where hospital patients would be treated as people rather than diagnoses and were informed participants in the care process. 

Planetree’s philosophy asserts that: we are human beings caring for other human beings; we are all caregivers; care giving is best achieved through kindness and compassion; and the opportunity to make personal choices related to your care is essential in a holistic approach to meeting people’s needs of body, mind and spirit.

Even a crotchety old gal such as I, armed with a black out blind and a sleep mask would fare well in such a welcoming, homey environment. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Children with special needs have extra special mothers

Belated Happy Mother’s Day to all mothers out there, and to fathers who act in that role in the absence of a Mom. Most especially, I acknowledge mothers of children with special needs; mothers whose care and attention is needed every single minute of every single day, often for the life of their child, however long that will be. 

To quote Albert Einstein — “most people see what is, and never see what can be”. Mothers and fathers and others involved in the lives of children with special needs see so much more.

Lots of mothers realise that their child doesn’t have to be defined by a disability with which he lives — challenged, perhaps, but not defined. Then there are mothers who will never experience that outcome; the anticipated and hoped for course of events when parents plan families and become Moms and Dads. Those Moms have long dismissed the notion of  a bit of ME time, like a soak in the tub with candles and music, because they’ve convinced themselves they must not ‘abandon’ their special needs child for such frivolities. Do you know a Mom in that situation? If you do, offer her an hour of your day, so she might have 60 minutes all to herself! 

Mothers of children with special needs do all the routine, daily things that Moms of children without challenges do and then some, especially when the ‘and then some’ throws them into a medical crisis outside their new normal.

In my childhood, children played with other children, most often outside, and those with limitations, as they were able, were included. Sadly, and detrimentally, that’s no so much the case today. Organised sports have gone off the rails to an extent, with helicopter parents brawling in the bleachers when they don’t get their own way, or rather when their little Jack or Jill doesn’t get his/her own way. Oh, what a Mom of a special needs child would give to see her child run track or swim the length of the pool at the local rec centre. 

Instead she often spends many sleepless nights, for months that grow into years, becoming expert on her child’s diagnosis and therapies and education plans. She becomes a master juggler, organising meetings with specialists and educational experts. Oh, and lets not forget all the medical jargon. Moms of children with special needs start speaking a whole new language. 

Parenting is difficult at the best of times and some couples buckle under the stress of maintaining a marital relationship while doing their ‘jobs’ as good/effective/aware/forward thinking parents.

Contrary to conventional wisdom, most marriages of couples parenting a child with disability  are strong, though the demands on time and energy are constant. For those mothers who have an active partner to share the load, the day to day tasks aren’t nearly so daunting but it’s typically Mom who handles the health/wellness of the child with disability with regard to doctors appointments and the like. That’s not to say that lots of fathers don’t participate in those parts of the parent-child dynamic but historically, it’s been the mother.

Think of all the routine tasks you’ve taught your child, from the first moment he could hold a spoon, or stand up and step, step, walk. You tell your child to wake up and get ready for school. Easy, huh? Moms of children with special needs often have to do all those things for their child. Will he ever learn to pull on his shoes, getting them on the ‘right’ feet? Layer upon layer of tasks just to get the day started. Then, at the end of the day, all those bedtime routines. 

Now imagine that your child is age 5, 10, 20, 40, 60 and he’s never learned to do any of those things.

For today’s Moms of children with special needs, I have just a few words of advice. Take time for yourself. You must! If you don’t take care of yourself first, you will not always be the best version of you to put forward for your child. He needs you to be that!

You have a silent cheering section who may not always tell you that you’re an amazing mother. So many wouldn’t have stepped up to the challenge, but you did, so - Happy Mother’s Day to you, today, tomorrow, and all the days that follow that you’ll share with your child who may never be able to say it, but he knows you’re special! 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Is he a service dog or a dog to be served?

Today is a special day for Mr. Digby, the Australian Silky Terrier who, along with Miss Lexie the Maltese, runs the show here at Chez Rockwell. He’s 14 years old, people! Yup! FOURTEEN! Like me, he’s a May baby. 

It was a chilly November day, 10 years ago, that Mr. Digby came to live with me, not long after I had to bid farewell to Mr. Jake, a 16 year old Cairn terrier. Terriers are terrific! 

With a girlfriend, I went to see Digby, a rescue in foster care, (the Mr. was added at adoption) who was waiting for me at Main Street Vet Clinic. Worthy of note was that, while crated, he was very quiet which totally surprised the lady who was caring for him, who said he didn’t like the other people he ‘interviewed’. Perhaps he sensed that I, with my various limitations, was no threat to him and he didn’t need to defend himself. He could see and hear my crutches.

At my urging, the ‘rescue lady’ let him out of the crate though she insisted he’d not come out. She got a surprise when, once the crate door opened, not only did he eagerly come out, he draped himself across my feet as I stood there balanced on my crutches. It was a done deal! He was officially adopted! In ‘dog speak’, lying across my feet was his way of marking me and encouraging me to invite him to join my pack. I did!

Adopting a dog, particularly if your walking is not fluid or you function from a wheelchair, is something that must be well thought out. Certainly, a working dog is well-prepared to meet the needs of those of us who move about on canes, crutches, or in wheelchairs, but the regular canines — pound puppies, lumbering labradors, or even tenacious terriers, don’t seem to know much about wheelchairs, except perhaps where to pee!

Those living with any sort of mobility challenge are well advised to check with a breeder, a veterinarian, or even the local pound, and ask lots of questions. Become educated about the choice of dog for yourself and your family. Some shelters will let you “try out” a dog for a weekend to see if things work out. Although frustrating for the animal, it does allow potential human companions to find out what they’re letting themselves in for.

Living with the quirks of cerebral palsy can be all at once funny and sort of frustrating, especially if one is educating dogs and cats about how to behave around those funny chairs on wheels, and those equally odd looking trees, we all know as crutches. Unlike his predecessors, Mr. Digby did not learn to walk while attached to a crutch. With him, my modes of mobility were a bit more high-tech!

That first day, Mr. Digby wasted no time tearing around the house, barely stopping to take a breath. He leaped up on all the upholstered furniture, one piece at a time, stopping to look at me, hesitating. I learned that he had been abused in his other home, tethered to a kitchen cabinet doorknob for several hours a day, then punished well after the fact for bladder indiscretions. I said nothing, just watching him enjoying his explorations. Realizing nothing bad was going to happen to him, he carried on with his inspection. I passed! Our first evening together was spent with him on my lap. We were off to a fine start.

The next day I introduced Mr. Digby to my wheelchair, as I had done with the Cairns that came before him.  I tied him out on a terrier-proof tie-out line, letting him inspect the chair before I sat in it, with leash already in place to attach his collar. A few turns around the yard, then part way down the driveway and back. Success. He seemed to like it. I would repeat this process for a few days in a row before introductions to the mobility scooter were made. His scooter training went very well and though we don’t get out and about as often as I’d like, he does behave well.

Mr. Digby, though not certified, unless a little bit crazy counts, could be viewd as both a service dog, and a therapy dog. He packs a lot of attitude in that small body. He’s a service dog as he loves to be served, and he’s a therapy dog because he provides companionship. I’m his therapy person given he came from abuse and need to heal emotionally from trauma — our connection  is mutually beneficial. 

We’ve been together almost 10 years, and so on this day,  acknowledging his 14 canine years, I raise a glass. He’ll get a cheeseburger sans bun, portioned out over 4 days. Happy Birthday, Mr. D!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Recently, I visited my childhood parish priest, Father Joseph LeBlanc who now resides in a retirement complex in Fredericton. Thankfully, to cruise the halls of this well appointed home away from home catering to the needs of seniors who need that little extra somethin’ somethin’, I chose to use my little red racer aka known as the beat up bucket of nuts n bolts. Using my crutches would have been exhausting and potentially hazardous to my health, given my relationship with slippery floors is not the best.

I, in my chair, appeared at Father Joe’s door with various foodie treats ready to put into his hands. My sidekick, Sandra, who is a tremendous help to me on city excursions, carried the bags. 

After a hello and a hug, let the visit begin! As I  looked around the room, I took in the some of the memories of Father Joe’s life on display, with lots of photographs, books and figurines; a stereo system prominent. He was happy to share a bit of history about this piece or that. Noticing the lovely furniture around  his quarters, it was clear he had a good eye; the furnishings were his own, brought from his previous home. After he examined the baked goods, I put them in the fridge. He needs a bigger fridge! 

Glancing around the room, I honed in on the window — it had no blind and the curtains were sheer. I slid into home decorator mode and envisioned what I’d do to make such a space work for me and my own needs when the time comes. Immediately my thoughts went to “I could never get a good sleep in here without some serious liquid refreshment! Please, God, let them hold a Happy Hour!” Room darkening blinds and drapes work for me! Before my first night in such a well-appointed suite, I’d trek to a department store for blinds, curtains, and installation hardware. They’re allowed `cause I asked. 

Not only am I conscious of what I put in my body, I’m also aware of those things with which I surround myself to enhance quality of life. Hydrotherapy, chromotherapy, and aromatherapy are significant parts of my daily living and all are especially helpful to one who ages with the neurological insult of cerebral palsy. To turn of the ‘busy busy’ cerebral palsied brain at bedtime, I benefit from a sleep mask. Contributing to a solid, sustained sleep, it’s made a huge difference in my day to day wellness. Also helpful is that the room be as noise free as possible. The ceiling fan in my bedroom makes an awful noise so I turn it off at night. I’m too short to whack it with a hammer!

Chronic poor sleep inevitably leads to health problems so maintaining a natural rhythm of exposure to daylight, and darkness at night is an essential component of sleeping well.  

Sleep deprivation can lead to higher risk of chronic health problems like high blood pressure, heart disease, and stroke. According to Harvard Medical School, for people with hypertension, one night without enough sleep can cause elevated blood pressure all through the next day. Not getting enough restorative sleep also influences our appetite. Inappropriate or ill-advised food choices often stem from insufficient rest. Mindless eating is often rooted in lack of rest which sets the stage for making bad choices; conversely, having a snack before bed is encouraged by health professionals as a sleep inducer. For myself, it’s either a bowl of cereal or home made yogurt with berries. Works like a charm! 

I am fortunate not to require sleep aids in the form of medications — key for me is setting the stage for rest/sleep before I actually go to the bedroom and get into bed. After dinner, lights throughout the house are dimmed; two electric aromatherapy lamps are turned on until bedtime. During the day all is bright - the TV room/office space, where I spend most of my time has no window coverings —lots of daylight. The other common spaces have a window blinds that are never lowered — bright/airy spaces that contribute to a sense of well being. In my bedroom the blind is left lowered and the drapes drawn, as time saving measures which serve to reduce the risk of falling injury to accomodate repetitive tasks.  

So long as I live home alone in rural New Brunswick, sleeping requirements and habits will be maintained. No doubt when the time comes and a move to more ‘assisted’ living is required, productive conversations will be held with providers of care about what would be best suited to my aging in a new place, notably how to make the that beauty sleep period as beneficial as possible. With good rest, a gal will always look her best, right?

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca

Inclusion grows up in small town New Brunswick

The community of Bath, where I grew up, lost two of its finest — on 8 April, Robert “Bob” McDougall, age 75, passed away at Scott’s Special Care Home in Woodstock; two days later, Jeanne Martha (Toner) Brennan, age 88, passed away at Carleton Manor,  also in Woodstock. She, along with her late husband Bill, raised a family of 14 children in Johnville, on the outskirts of Bath. Their children were educated with the MacInnis clan.

Spirtuality defined both of these  fine examples of humanity who were quiet forces in this quaint village on the St. John River — which brings me to a key point of this week’s sharing moment. 

If you don’t think you can make a difference in the life of someone in your community, think again. Bobby McDougall made a huge difference in the community of my childhood. He had many friends, not only in Bath, but also in surrounding communities, like Johnville, where, in the family home, Jeanne Brennan lived until she moved to Carleton Manor in December of last year. On my last visit with her, a few years ago, I brought her a loaf of home made bread and some muffins. She insisted that there had to be a cup of tea to go with! She recalled my snowmobile treks from Bath to her home, about 3 kilometers away. Through the woods I’d go; she and Mom never abandoned worrying about my antics, but I’d get it done! Just as Bobby always did.

From Nancy McQuade, a lifelong Bath resident: 

“Bobby loved going to the Johnville picnic and the Bath Fall Fair and getting to see all the people  he had not seen since the last one. He would always call for weeks before the event to make sure I would go down to Woodstock to bring him up for it.  He would tell me what time to pick him up.  I did not dare be late.  One time I said to him ‘I will be there, Bobby, if I don’t kick the bucket.’   He said, ‘What does that mean, dear?’   I said ‘unless  I pass away,’ and he said ‘you better not dear. Who will take me to the picnic?’ Nice to be loved!!”

As a child, I got to know Bobby, Libby Hart, the daughter of the manager of the Bank of Nova Scotia, and Johnny Corbett, son of another of our church family. Bobby and Johnny were always at Sunday Mass.  Libby attended school, not letting the challenge of Down Syndrome stop her; sometimes, in third grade, she sat beside me. Our teacher, Carol DeMerchant, was her BFF. Known for her well put together look, Libby was a very stylish young lady  — she passed away in 2008 at the age of 57, having lived a full and active life. 

Though I was younger by a few years, we all had one thing in common. We four were differently able, growing up in homes where our ‘special’ needs weren’t at the forefront when it came to the important stuff of kids being kids. 

One of Bobby McDougall’s best buddies in Bath was Father Joseph LeBlanc, our parish priest at St. Joseph’s Catholic Church. Father Joe included both Bobby and Johnny Corbett in the celebration of the Mass on Sunday — they were, after all, part of the community. Before ‘inclusion’ became fashionable, they, Libby Hart and I were included! That’s just the way it was and continues to be today in Bath and in other small towns and villages.

Changing collective attitudes about ‘value’ changes the way children with challenges will feel about themselves and their place in the community. They begin to feel valued and appreciated for what they can contribute. Including children who walk differently, talk differently or think differently in events like birthday parties and sleep-overs sends a clear message that they don’t need to worry about the can’t do of their day to day world. Being together with other children just being kids is often just what it takes to forge a path to a life long connections. Much like what Bobby, Johnny, Libby and I had in Bath. 

Just as Bobby, Johnny, Libby and I made a difference, those who don’t live with such obvious challenges can as well. Offering  an hour or two of our own daily living to a frazzled mother of a child with learning disabilities who just needs a break. We can ‘just show up’ at the home of a family whose child needs daily physical therapy, for a show and tell. Bring doughnuts.  Let Mom show and tell you how particular exercises are done. Offer to pedal scrawny little legs a few times a week. I have many recollections of myself as that scrawny little kid who needed the legs ‘pedaled’. There maybe some among you who remember me learning to ride a two-wheeler. 

Get down on the floor and colour with a child who has eye-hand co-ordination deficits. You might find Picasso waiting to come out to play!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.

Free to be me -- independently

“Why does Fredericton need a L’Arche community?”, asked Margaret and Rodney Savidge in a recent Brunswick News commentary.

A L’Arche community in Fredericton is necessary not only for those young adults and older/senior adults with intellectual disability who need care and compassion but also for those in the ‘mainstream’ living and working in the community which they share.

In the words of Jean Vanier, Founder of L’Arche,  “the story of L'Arche begins with a huge gap of injustice and pain. It is the gap between the so-called ''normal'' world and the people who have been pushed aside, put into institutions, excluded from our societies because they are weak and vulnerable. This gap is place of invitation in which we call people to respond.”

A L’Arche community fills the gap not just with a place, a home for adults with intellectual disabilities — but also it fills the gap that many among us have in our own lives. The gap of feeling and being needed, of feeling useful; of doing our part to make the community in which we live work for everyone, especially for the ‘least among us’. Bridging the gap between those who ‘can’ and those who ‘can with proper supports’ benefits everyone, and I do mean everyone. Persons with challenges are too often seen as a burden to all of us tax paying citizens by those who just don’t know.  I find it offensive. Not only that, it’s wrong thinking and has no place when speaking of the needs of persons with challenges to daily living. You or you or you could become, in a single instant, a ‘person living with challenges to daily living’. You’re not special in that regard. Are you lucky? Maybe! You could become the parent of a child who will require lifelong supports and once adult that means accomodations with regard to where he will live. Staying in the family home from cradle to grave isn’t always a realistic option.

“It’s a dream for me to live in the community,” declared 36 year old Garrett Sinclair, when recently interviewed by Brunswick News. Mr. Sinclair lives with intellectual disabilities that make realising his dream a bit more difficult than typical for a person his age. He’s gone a few decades beyond an age when young people venture out on their own, away from hearth and home and the daily Mom and Dad support. Garrett relies upon limited supports from others to ensure his independent living goes smoothly and he is safe on a daily basis. The ‘system’ has a duty to ensure that all the Garretts in our province have safe and secure lives when parental supports are no longer available or not as available as they had been for year after year after year. Parents of adults with disablity are ‘aging out’ of their ability to meet the daily challenges caring for their child requires along with maintaining their own health and wellness as they enter their senior years. They feel guilty that they just can’t do it anymore. They must not feel guilty nor made to feel guilty. What they need is help! Not in a year, two years, five years. They and their adult children with disability need help NOW!

Imagine being 70-80 year old woman of 120 pounds caring for a profoundly involved son with the mind of a toddler who weighs 240 pounds and unable to walk. Imagine you are his primary caregiver with limited in home visits from familial help or government-subsidised help. What’s going through your mind right now? Panic? Imagine living with the daily dread of wondering what happens when you can’t do it anymore. What happens to your son or daughter,  brother or sister?

When Garrett was 22,  just 16 years ago, his mother related that someone from Social Services suggested he living in a nursing home! That, my friend, is an attitude that should have gone the way of the dinosaur back in 1981, the International Year of Disabled Persons (as it was called). Actually, it’s an attitude that should have burned away decades before. 

Remember that fellow, Franklin Delano Roosevelt? He led a country in the midst of war while coping with his own wars. The wars raging within his body ravaged by polio which cost him the use of his legs and left him with life-long pain. He hid his disability from public view as best he could but documentaries and docu-dramas about his life gave us a glimpse. In his position, a disability would have raised questions. Being ‘less’ physically able didn’t make him unable. The same is true today for those of us who live with challenges to daily living and full inclusion.

What Garrett wants and what his family wants for him is not unreasonable. He’s a young man who wants to go to work, participate in things to entertain himself, have his own place with the stuff of his life around him. What person his age doesn’t want that? 

This is why Fredericton needs a L’Arche community.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, New Brunswick with her aging Australian silky terrier and a rambunctious Maltese. She can be reached at carmacrockwell@xplornet.ca via email.