The 'F-words' in Childhood Disability

In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!

Dr. Rosenbaum discusses the 'F-words' in Childhood Disability below:

The 'F-words' are based on the World Health Organization's International Classification of Functioning, Disability and Health (ICF) framework.

Building on the ICF framework, the 'F-words' focus on six key areas of child development. Recognizing that no one factor is more important than another, the hope is to encourage people in the childhood disability field to adopt this way of thinking and apply these concepts in their work with children with disabilities and their families.

I wrote about being invited to be a member of the 'F-words' research team HERE.

Since that time, we have been working diligently behind the scenes to create a knowledge hub with tools to help apply the 'F-words' in practice. As an integrated team of families, researchers and clinicians, we are partnering together to promote the uptake of the 'F-words' concepts in the lives of children with disabilities. We are on a Knowledge Translation (KT) journey, finding ways to get our research out there in a user-friendly and accessible way that is relevant and meaningful for youth, families, and health care providers.

We believe that in order to transfer the 'F-words' into practice, researchers, clinicians and families must communicate and work together. We make up an interesting group of experts! While each party brings their own perspective, values, and experiences, there are common goals and overlapping beliefs. This is the power of a collaborative approach!

Earlier this year, I participated in a webinar through CAPHC - the Canadian Association of Paediatric Health Centres. The webinar, titled "The F-words in Childhood Disability: A Call for ACTION - Bringing parents, clinicians and researchers together", was a panel discussion with each representative sharing their unique perspectives on the 'F-words', and strategies for implementing the 'F-words' concepts in practice.

It was an honour for me to sit on a panel with Dr. Rosenbaum and Dr. Gorter, the two founders of CanChild, and individuals for whom I have so much respect and admiration. Their work in the realm of childhood disability has been monumental in changing the way we think about disability, and it will have a continued positive impact on the lives of children and youth with developmental disabilities and their families.

A recording of the webinar is linked below:

As a parent of a child with cerebral palsy, I feel it is important to be involved in research, and I am honoured to be involved in this particular 'F-words' research. I believe that family members can offer a unique perspective. While researchers and clinicians are interested in the topics they study, families like mine live the experiences that they are studying. Any knowledge gained by research can directly affect our lives. Researchers may have in-depth knowledge of both diagnosis and general prognosis of various childhood disabilities, but reading my son's file (as large as it is!) does not give a complete picture of him as a whole person. As his mother, I am able to provide real-life insight on how his diagnosis affects his (and our) day to day life. We are experts on our children, so it is crucial that family voices are heard.

This webinar was "A Call for ACTION", which means that we want people to share these ideas. Parents, if you like the ideas, share them! Share them with your social networks, with your friends, family members and service providers.

The 'F-words' provide a new way of considering the aspects of life that are most meaningful for children with disabilities and their families. Know that when you direct therapy planning to these six words, you are doing what the evidence tells us works best. Focus on your child's strengths, let them enjoy their childhood, and be open to your child doing things in a way that feels most comfortable to them.

The 'F-words' in childhood disability have sparked the interest of a global audience. In a collaboration between CanChild and World CP Day (which is coming up on October 5th!), a wonderful poster was created to illustrate the 'F-words' as they relate to cerebral palsy. The poster shown below can be downloaded HERE.

It is very exciting to see that organizations and health professionals are acknowledging the importance of these 'F-words' concepts and are working on promoting development through child and family strengths. As a parent, I strongly believe in a family-centered approach to child development, and I would love to see these concepts incorporated into every aspect of clinical service, research and advocacy for children with disabilities.

All children have the capacity to succeed. We just need to help them get there!

You can read more about the 'F-words' in Childhood Disability here - https://canchild.ca/en/research-in-practice/f-words-in-childhood-disability

Go Fly a Kite!

On Sunday, Andrew and Brennen and I headed in to Bowring Park for the 4th Annual PAL Kite Festival!

The staff of Provincial Airlines invited the public to celebrate the wonder of flight with a fun-filled day of events including a kite flying contest, a kite decorating station, a BBQ hosted by Red Oak Catering, face painting, live entertainment, and lots more!

I texted Andrew on Friday and said, "I have plans for us for Sunday. Two words: Kite. Festival." He wrote back with, "By 'us', I hope you don't mean Brennen, because the very quality that creates a successful kite festival ruins his life. haha!"

He was sort of joking, but of course, he was right. Brennen hates the wind. I have written about this before (HERE) - about how we constantly have to change our plans because Brennen is not happy being out in the wind, how we can't just hang out in the park, or go to outdoor events like most people. Well, I was determined to attend the kite festival - for us to attend the kite festival, as a family - and so we did.

And it was AWESOME!

I haven't flown a kite in.. I don't know.. ever! We don't even own a kite, but thankfully there were some available to purchase at the park, and all proceeds from kite sales (and any other donations) went to the Children's Wish Foundation of Canada - Newfoundland and Labrador Chapter!

We are so happy to support the Children's Wish Foundation, and the incredible work that they do for so many deserving families. Recently, Children's Wish has broadened the range of eligible children to whom they grant wishes to include children with life-threatening illnesses and those with serious genetic and neurological diagnoses. By granting heartfelt wishes and creating unique and meaningful experiences, the Children's Wish Foundation greatly enhances the quality of life for these courageous children and their families.

It was such a fun day! Juno Award winning artists, The Swinging Belles performed their fun and upbeat swing music for the kids, and had everyone up dancing!

I just loved seeing all of the different kites up in the air, and how much enjoyment the little ones got out of watching them twist and twirl and then nose-dive back down to the ground. It was also surprising to me that so many 'grown-ups' are really into it!! We have some serious kite-flyers in this town! There were some pretty impressive stunt kites, and some that were on strings so long they went up so high you could barely see them. It was really cool, I have to say.

We are desperately clinging to these last few days of Summer. The long evenings, and perfectly warm temperatures. Brennen has been enjoying outings and sleepovers and lots of time spent with all of his favourite people. He has been so happy, so relaxed, and I just know that when school starts, we will be back to a tighter schedule with more demands placed on all of us. Not that that's all bad, but I do enjoy the freedom of not having the days already planned out for us. I'm sure that Brennen will be excited to see his teachers and his classmates. Brennen loves school. I would just like to hang on to Summer for a little bit longer. It feels like when Fall arrives, we will be trapped indoors once again, hiding from another long and cold Winter.

But that's it. Seasons change. Time goes by so fast, and I have come to terms with the fact that no matter how much I may beg and will it to stop, it won't. We can't slow it down, but we can hold on and enjoy the ride! Sometimes you need to just get out there. Take every opportunity to make moments. Make memories. Go fly a kite!

-Julie

Man in Motion

Rick Hansen was back in Newfoundland this week to celebrate the 30th Anniversary of his Man in Motion World Tour! Inspired by the dream of a world accessible and inclusive for all, and a passion to make a difference in the lives of others, Rick Hansen set out on his legendary journey on March 21, 1985. He brought international attention to the need for accessibility for people with disabilities by circling the globe in his wheelchair. Rick traveled over 40,000 kilometres, through 34 countries and 4 continents.

It was on August 25th, 1986 that Rick and his team returned to Canada, starting their journey back to Vancouver at the eastern most part of the country, in Cape Spear.

Rick suffered a spinal cord injury at the age of fifteen, and he realized early on that one of the biggest barriers for people with disabilities was other people’s attitudes and perceptions of their capabilities. Rick was determined to change that.

The Man in Motion World Tour was a success, raising $26 million for spinal cord research and quality of life initiatives, and heightening worldwide awareness of the potential of people with disabilities

In the 30 years since then, great strides have been made towards improving community access for all people with disabilities. This includes increased employment, improved transportation and better access to education, recreation and housing. Rick Hansen sees the need for increased awareness, however, and remains committed to facilitating changes to the barriers that stand in the way of people with disabilities reaching their full potential.

The Rick Hansen Foundation was established in 1988, following the completion of the Man In Motion World Tour. It's mission is to inspire leaders, influencers, and the public to join Rick Hansen in creating a global movement to remove barriers in the built environment and thereby liberate the potential of people living with disabilities.

As a gold-medal Paralympian and World Champion, Rick is passionate about sport. He believes that sport plays a crucial role in realizing his dream of creating healthy and inclusive communities. Rick says there are many Newfoundland athletes and role models who have inspired him. People like Mel Fitzgerald, Joanne MacDonald, and current para-athletes Liam Hickey and Katarina Roxon.

Rick spoke about the amazing transformation in attitudes, in acceptance and in levels of inclusion in sport for athletes with disabilities in recent years, and he says that with the 2016 Paralympics coming up, "The more we hear stories of athletic accomplishments, and the more we can focus on ability, the sooner we can get rid of the negative stigma that existed in the 80's and 90's."

It's because of people like Rick Hansen, and Terry Fox, and Nick Foley, creating awareness and promoting inclusion and acceptance, that things are changing in a positive direction. The future for my boy is looking brighter! Do I still worry? Of course. But I know that I am not alone, and that we will continue to advocate and work to change the stereotypes and prejudices regarding people with disabilities.

Finding my own voice and form of advocacy using this blog has been an incredible journey, and I am learning every day. I dream of a world where people with disabilities will be accepted, loved, and understood by everyone. Changing the world is hard but important work. We need to raise children who see each other with love, who know and live life with compassion, and who embrace each others differences. We all choose every day how to live our lives and today, once again, I choose to try and make a difference.

“I honestly believe that my best work is in front, not behind me. I am driven by a deep passion and need to make a difference and leave this world a little better than when I arrived. That’s what keeps me going.” -Rick Hansen

*****

I also want to mention here that Rick Hansen's daughter, Emma has a beautiful blog - Sincerely, Emma - where she shared the touching story of the still birth of her baby, Reid. Since that post went viral last year, her blog has become a safe place where other mothers share their experiences and stories of love, despair, loss, and hope. It is a "community-run blog inspired by the sisterhood of motherhood in loss, with a focus on supporting open discussions about the many layers that develop while living with half your heart in heaven." So beautiful, and so brave.

-Julie 

I Heart Granny Squares!

Early this year, I made it my New Year's Resolution to learn how to crochet. I have been obsessed with granny square blankets (like the one my own grandmother made when we were young and we kept over the back of our sofa at my parents' house) for as long as I can remember. Seriously, who remembers having these on their couch?! It took me a little while to get the hang of it, but I believe I have officially mastered the art of the granny square!! 

I love being able to turn this:

into this:

I have completed several other projects:

A small granny square for Brennen's lap.

Several large rainbow granny squares..

And this one is a granny rectangle!

I even crocheted something other than granny squares. I'm pretty happy with this v-stitch blanket!

This is my most recently completed large granny square blanket. I love these colours!

And I always have a work-in-progress!

These are some of the other beautiful crochet blankets in my collection that have either been gifted to me, or I have purchased at some little shop around the bay! They are hard to come by, but when I see them, I just have to take them home! I know how much thought and time is poured into each one, and I love that they all have their own story. I just don't know how you can part with these things, but I appreciate them all for the time and the history that is embedded in them.

This one I picked up at a local craft fair. I was drawn to the colours (I don't often use red), and I love the scalloped edge!

This one was given to me by Andrew's Aunt and Uncle. They searched all over Nova Scotia for "granny knots", and finally found this treasure!
I adore the colour palate, and the super fine stitches! This is one of my absolute favourites!

This one I purchased at the Shag It Café in Whiteway. Andrew and I had lunch there one day, and I discovered this beauty in the gift shop! 

The owner said that an elderly lady in the community worked on this blanket every day while her husband was in the hospital.

This beautiful blanket was a gift to me from Andrew's Mom (who is also into the granny squares and has taken up crocheting as well!) 

I was so touched by the effort that she put into finding me a blanket that she knew I would love. This one means a lot to me, and I just love the story of how she got it - Let's just say she ended up at an old lady's house around the bay, having tea and a grand ol' chat!

This one was also a gift from Andrew's awesome relatives in Halifax. Thanks again, Phil and Marie! xo

This is the one we keep on our bed during the Winter. It's giant (90 x 55 inches), and is so cozy and warm! I found this one at a little shop in Green's Harbour. The store owner told me that the lady who made it was in her 90's and it was probably the last one she'd ever do. :(

And this is my grandmother's original granny square blanket that hung over our sofa when I was a kid. I am so happy to have it now, and to have so many wonderful memories of such a special lady neatly tucked inside. I love you, Nan!

Crocheting has become my new favourite pastime - it is a relaxing (yet productive) way to enjoy those fleeting moments of pure quiet where I can just do something for myself. In my 'down time', when I allow myself to take a break, to take a load off, to breathe.. this is what I like to do. Andrew is convinced that I am 100 years old, but that's ok! I don't even mind! Curling up on the couch with a work in progress is a great way to relax and unwind after a busy or challenging day. In a way, it keeps me from unravelling, one stitch at a time!

To put it another way - "I crochet so I won't kill people!"

One of these days, I would love to have an Etsy shop set up to sell my granny square blankets. Or I would like to have them available at a little shop or gallery somewhere out around the bay. (Anyone able to hook me up with that?!) For now, I am keeping them all for myself because I love them so much!! xo

La Manche

Whenever we get the opportunity (and if the weather is cooperating, and we have someone to watch Brennen, and the stars align), Andrew and I enjoy hiking the East Coast Trail. We have done a number of the trails in and around the city, and just recently went back to explore the area around La Manche, on the Southern Shore.

La Manche was once one of Newfoundland's most picturesque outport communities. Originally settled around 1840, La Manche served as a flourishing seasonal fishing village. It featured a beautiful protected harbour but very little land on which to build, so much of the community was built on stages along the cliffside. You can only imagine how hard the people of La Manche must have worked to run a fishery from such a difficult location. Walking along the trail, we were struck by both the beauty and the harshness of the steep cliffs and the rugged shoreline.

In 1966, a severe winter storm devastated the community, wiping out its stages and wharves, and forcing the residents to resettle. All that remains today are the old concrete and slate foundations upon which the houses stood, remnants of brick chimneys, and stone steps that lead to nowhere.

In the heart of the former fishing village is the most notable feature of La Manche. The 50 metre suspension bridge was built in 1999 - replacing the original bridge that was destroyed by waves in the storm of 1966. This new bridge was officially opened in June 2000, and is dedicated to the former residents of La Manche Village, many of whom resettled in nearby communities.

We continued on a side trail to Doctor's Cove, which is the perfect location to set up a picnic, or to just sit and watch the waves crash in on the rocks. The stillness and the beauty of the area was not lost on us, as we breathed in the salt sea air and enjoyed every moment of silence.

On the way back, Andrew let me take a picture of him in his cat tank top!!!
Back up, ladies. He's taken!

This was such a great day! If you get the opportunity to visit La Manche Village, I totally recommend it!

"There are things we will never see, unless we walk to them." - Thomas A. Clark