Wednesday, June 5, 2019

Outdoor Inclusion Summit

Last week, I attended the inaugural Outdoor Inclusion Summit, facilitated by TA Loeffler and Tomás Aylward. The goal of the Summit was to bring practitioners, students, individuals and/or families experiencing disability, and community organizations together to share their stories, experiences, and visions for inclusive outdoor recreation.

Dr. TA Loeffler is an educator, adventurer, nature advocate, author, and professional keynote speaker from St. John’s, Newfoundland and Labrador. She brings 30 years of expertise leading people through significant life-changing experiences to every facet of her work. Her work and adventures have taken her to 45 different countries and all seven continents. TA has completed 6 and 4/5 of “The Seven Summits,” the highest peaks on all seven continents! In 2015, TA was named to the “Canada’s Greatest Explorers 100 Modern-Day Trailblazers List” by Canadian Geographic.

As a Professor of Outdoor Recreation at Memorial University of Newfoundland, TA has developed a reputation for excellence in experiential education because her students are more likely to be outside chasing icebergs than sitting in a classroom. TA inspires hope, possibility, and vision in those whose lives she touches. Over the past 15 years, TA has shared her message of “Big Dreams, Big Goals” with over 100,000 youth in the province of Newfoundland and Labrador.

TA believes that we all long for a balanced, engaged, and creative life that challenges us to be the best we can possibly be. She models this belief in her life on a daily basis and combines her broad range of skills to inspire all to create the life they truly want.

Tomás Aylward joined us from Tralee, Ireland, where he has been teaching Outdoor & Experiential Learning modules at the Institute of Technology, Tralee (ITTralee) for the past 16 years. He lectures on degree programs in Outdoor Learning, Health & Leisure studies, Adapted Physical Activity and Field Biology/Wildlife Tourism. He continues to have an evolving outdoor learning practice with influences from adventure sports as well as experiential education and environmental education.

The Summit included a combination of keynote presentations, discussion, and workshops related to inclusive outdoor recreation. After some instructional time in the morning, we spent most of the afternoon outside, stepping out of our comfort zones and experiencing the outdoors in ways that we might not have ever before. Some participants tried navigating the grounds of Easter Seals House in a mobility device, some of us were blindfolded, eliminating our sense of sight, or some wore noise-cancelling headphones, reducing our sense of hearing. It was incredible to see how drastically our experience of the world is altered when our senses are impaired. You quickly learn to depend more on your other working senses.. and to rely more on others for help!

There were a number of different pieces of adaptive equipment available to try throughout the day. There was a TrailRider (which we previously borrowed, and I wrote about HERE), as well as a Hippocampe (see HERE). It was great to be able to try these different pieces of equipment first-hand, to ask questions about their use, and to see them demonstrated on all types of terrain. 

Here I am testing out the GRIT Freedom Chair. What a workout! The GRIT Freedom Chair is an all-terrain wheelchair built for every type of adventure. It is a lever-driven wheelchair that comes armed with rugged mountain bike wheels, a big, sturdy front wheel that doesn’t get stuck, and optional trail handles, allowing you to choose your own custom journey. (TA was spotting me here because I wasn't so great with the steering!)

We had a lot of great discussion about the importance of getting outside, regardless of your physical ability, and it made me think about the things that we do as a family and how we can incorporate more outdoor recreation into our lives. It can be tricky here in Newfoundland, because the weather doesn't always cooperate when we want it to, but we recognize how important it is for our health and well-being to spend time in nature, away from screens and electronics, enjoying our natural surroundings.

When I think of some of my all-time favourite moments, the majority of them involve some sort of outdoor adventure rooted in nature. I think of days that Andrew and I spent hiking on the East Coast Trail, or walking the beach in Mexico, or snowshoeing across a frozen pond. Most recently, we took Brennen in a TrailRider up to the top of Red Cliff (see HERE), and my heart still skips a beat when I think of the magnitude of that. It was something I never though we could ever do, but we tried, and we did it, and it turned out to be one of those moments that I will rank up there with the greatest of all time. Perhaps it has something to do with taking risks, conquering our fears, venturing beyond our natural confines, and realizing that we can do more than we think we can if we put our hearts and minds to it. Brennen loved our adventure, and we loved being able to share that incredible experience with him. It won't be our last.

I came away from this Summit feeling so inspired by TA and Tomás and the passion that they both have for the outdoors. I am grateful for the fact that they are committed to inclusion and exploring how we can provide support and opportunities for individuals to access the outdoors regardless of barrier or disability. The truth is that everybody should be able to enjoy their natural surroundings, and there are ways to make that happen. Physical activity and time outdoors is paramount to health and happiness, and no one should be excluded from nature for any reason.

We are looking forward to creating more adventures of our own this summer, and while they may not all provide the adrenaline rush of a mountain hike, or include a trip to a volcanic island, there are adventures to be had in our own backyard, and we are determined to find them!

Thursday, May 30, 2019

Inclusive Education Award 2019

Each year the Newfoundland and Labrador Association for Community Living along with the Department of Education presents an Inclusive Education Award to a school that has shown an exceptional spirit and commitment to creating a space that is welcoming and inclusive for students with an intellectual disability.

I was honoured to be part of the selection panel once again this year, to assist in reviewing the nominations and to help choose a deserving school for the 2019 Inclusive Education Award.

Inclusion is a way of thinking and acting that allows every individual to feel accepted, valued and safe. As a parent of a child with a disability, this is what I want most for my son. When he goes to school, I want him to feel included and valued, and encouraged to build on his own unique abilities.

Inclusive school communities are those with an open, welcoming attitude that respect every individual, while valuing and celebrating differences and diversity.

When reviewing the nominations for this year’s award, it was wonderful to see that some really great things are happening in schools all across our province, however, one school stood out unanimously across the judging panel. This year, we were thrilled to present the Inclusive Education Award to Roncalli Elementary!

Throughout their application, there were many examples of how Roncalli goes above and beyond to appreciate each and every child in their school. From installing a special swing in the playground to accommodate a young student with a physical disability, to the planned development of a sensory garden that will allow for stimulation and learning for all students, particularly those with complex needs, Roncalli has demonstrated a deep understanding of the link between social, emotional and academic achievement and unwavering commitment to ensuring that all students feel safe, valued, welcomed and included in all aspects of school life, not just in the classroom.

Perhaps the most compelling letter in their application package was written by the parent of a Grade 3 student. This young boy was diagnosed with a rare disorder that lead to the loss of his verbal expression and language comprehension. He began to use ASL (American Sign Language) and many teachers in the school took the initiative to learn these skills and to become proficient ASL as well. ASL is now incorporated into daily classroom instruction, and many of the students in the school have learned to communicate in ASL as well. This student and his peers are now able to communicate together in a way that truly celebrates the different ways we learn, communicate and live. Roncalli has clearly demonstrated the conviction that every single child belongs in their community school and in diverse classrooms, with the right to learn, discover and develop their unique talents and abilities together with their peers.

Inclusive education is the foundation for building a more inclusive world for everyone, and for all that they are doing to promote a culture of inclusion and acceptance, I was proud to present the Inclusive Education Award to Roncalli Elementary!

Inclusive education provides all students with the right to attend school with their peers and to receive quality programming and instruction. It involves a continuum of supports and services in the best possible setting, respecting the dignity of all children. We have some very positive approaches to inclusive education being utilized in schools throughout our province and they deserve to be recognized. I encourage all schools to apply for the Inclusive Education Award, to highlight their important work and efforts."

- Dennis Gill, President, Newfoundland and Labrador Association for Community Living

Tuesday, May 28, 2019

Sleep Study

Brennen spent the night at 'Hotel Janeway' last night to undergo a planned sleep study. We have been suspecting that he has some sort of obstructive sleep apnea, because his breathing in the nighttime is not ideal. For the past few months, Brennen has been struggling to breathe while he sleeps, and it has been very concerning for Andrew and I. We reposition him many times throughout the night, and have been taking turns sleeping with him to make sure that he continues breathing. It is a constant worry. We saw an ENT, who recommended this sleep study in order to properly diagnose whatever might be going on with him.

There wasn't a lot of sleep happening throughout the study. Brennen wasn't fond of having the nasal prongs in his nose, but they were necessary to monitor his breathing. He couldn't get comfortable on his back, as he is used to sleeping on his belly, but he did manage to doze off for a couple of hours. Hopefully that will be enough for them to get some sort of reading to tell us what exactly is happening with his airway during the night.

We are fortunate that Brennen has been really well, medically, for the past few years. He hasn't had any illnesses or major procedures since his back surgery in 2017. He has been really happy and comfortable and we have had no real concerns until recently, when he started this unusual breathing at night. He is noisy and it sounds like he is snoring, but there are times that he really struggles to get a full breath. He has been tired during the day because he is not getting a good quality of sleep during the night, and this is not normal for him. We are anxious to get him back to a place where he can get a full nights sleep without these disordered breathing events.

Sleep is important for everyone and plays a major role in overall good health and well-being. We all know that we feel better after a full nights sleep, and though sometimes as parents we have to learn to function on broken sleep, it is not the ideal situation. Brennen's little body needs sleep to support healthy brain function and to maintain his physical health. Hopefully we are on track to get him back to his body's optimal condition. We haven't received the results from this sleep study yet, but our fingers are crossed that we will have answers soon.

If you guys have any experience with sleep disorders or sleep apnea, I would love to hear from you!

Sunday, May 26, 2019

Finger Puppets for the Janeway

Are you guys aware of the incredible thing that is happening right here in Newfoundland and Labrador right now? No, not the icebergs, though they are lovely.. I'm talking about something a little more personal. There are people - knitters - coming out of the woodwork to help put a smile on the faces of the children of our province.

On May 9th, Denika Philpott saw a Facebook post saying that the Janeway was running out of finger puppets, and it struck a chord with her. Denika told me that she remembers visiting the Janeway numerous times with her own young children, not for anything serious, but her daughter, Abigail had to have bloodwork done quite often and every time she left she would leave with a finger puppet, and she would dry her tears and that would be the highlight of her day. She said that the thought that a child might have to go to the Janeway for bloodwork or some other procedure, and not get to have that little treat really bothered her, and so she decided to do something about it.

Denika started public a Facebook group called 'Knitted Finger Puppets for the Janeway', and it has grown to include almost 1000 people, all eager to donate their time to such a wonderful project. It is such a positive group, with people sharing patterns and offering help to those who might not be seasoned knitters. It is amazing to see how creative some people can be with such a small canvas to work with. There are pictures of finger puppets in the shape of unicorns, sock monkeys, ninja turtles, you name it! There are photos posted daily of the batches of tiny puppets that people are ready to donate. My favourite photo so far was of a bag stuffed with finger puppets with a note attached that said, "Emma Wells, 97 years old, 175 finger puppets, original pattern since 1982". Amazing.

Denika has been so impressed that people are taking it upon themselves to deliver the finger puppets to the Janeway, and they are even checking with other hospitals around the province to see who might be able to use them. She says it really shows the true hearts of Newfoundlanders and Labradorians - people pitching in to help others.

The group has now expanded to include people knitting preemie hats, and booties for the Janeway as well. There are photos of tiny babies, with captions like, "My granddaughter was born December 9, 2018, 10 weeks early weighing 2 pounds 6 oz. These hats are what kept her little head warm while she was in the incubator." If  that doesn't pull on your heart-strings, I don't know what will!

I have visited the blood collection department with Brennen many times over the years, and he always leaves with a puppet covering his bandage, and a smile on his face. Like Denika, I can't imagine not having that little token of kindness to go home with. It's something so small, but it can really brighten your day and put a positive spin on something that can otherwise be quite scary for young children (and their Mommas!)

We invited some of our favourite kiddos over on the weekend (my niece and nephew), and they had a great time playing with the finger puppets that Nanny made! We look forward to bringing these in to the Janeway this week!

I am a sucker for a good-news story, especially when it comes to children in the hospital, and I commend these knitters (including my own Mom!) for putting the time in to help put a smile on the faces of some very special kiddos. Thank you, thank you!!

Monday, April 22, 2019

Exploring Red Cliff with a TrailRider

Today was a bit of a funny day. It was a holiday for some, either because of Easter Monday or St. George's Day. It was also Earth Day and it was 14 degrees, so we knew we were going to spend the day outside. We borrowed a TrailRider from Easter Seals NL, and were excited to get out and explore!

The TrailRider is a single wheeled mobility transporter. The single wheel supports the rider's weight while the handles at the front and back allow two, three or four helpers to guide the rider along the terrain. It claims to "have taken people with disabilities to places they never thought possible", and they are not kidding. This thing is intense, and I actually think it could go just about anywhere.

Andrew and I were feeling adventurous this morning, so we decided to take Brennen up to the top of Red Cliff - a popular stop on the East Coast Trail with some fantastic views of the ocean.

We made it up to the top of the hill just as it started to rain, but we kept going, determined to let Brennen fully experience the incredible beauty of this place. Red Cliff is one of our favourite hiking spots, but I never imagined in a million years that we would ever get Brennen up there!

(Thanks to the lovely people on the trail who graciously took this picture for us!)

We stopped to check out some of the old buildings that were once part of an American air / radar station. At this now abandoned site, some of the original buildings are still standing, while others are almost completely in ruins. The graffiti is different every time we go there, and some of it is pretty impressive, actually!

While the old buildings are fun to explore, the real attraction up here is the view. I should note that while it looks like we are really close to the edge of the cliffs, we were sure to keep a safe distance.

Despite it being a rainy ol' day, we had a fabulous time. Brennen was super pleased with his off-road adventure, and we now know that he is able to join us on some of our favourite hiking trails! The TrailRider was super easy to use and Brennen had a blast! I am so grateful for opportunities like this to spend quality time with my favourite boy. I love seeing him so happy!

Thursday, March 28, 2019

Families in Canada 2019

On March 27 and 28, 2019 in Ottawa, Ontario, the Vanier Institute of the Family hosted the Families in Canada Conference 2019 - a national, pan-Canadian conference with simultaneous satellite events co-hosted by university partners across the country. Memorial University of Newfoundland hosted a satellite event here in St. John's, which explored themes and topics related to families and mobility.

"Geographical mobility and immobility are integral parts of daily life that affect us all. One of the key challenges for families is managing the diverse and divergent responsibilities of individual family members related to work, school, community involvement, recreation and other activities.
This can be particularly complex for some families, such as those who need to travel far from home for often prolonged periods in order to access education, work or health care (such as with many Indigenous people living in Newfoundland and Labrador); people who need to move frequently as part of their job and career (e.g. military, police); families living with disability; families new to Canada; families experiencing violence; and more.

Memorial University’s Families in Canada Conference 2019 satellite event will focus on Families on the Move, where catalytic conversations will be fostered and facilitated among diverse delegates, including mobile workers, immigrants, First Nations, Inuit, military personnel, veterans, public safety personnel, survivors of domestic violence and people with disabilities, as well as those who study mobility and families among these groups, and those who serve and support them."

I was honoured to be invited to speak on a panel entitled: Lived Experience of Mobility and Families. We are the experts of our own lives and yet so often those with lived experience are missing from the conversation. This panel gave voice to those who are most affected by mobility to help others understand how it impacts them and their families.

It was my pleasure to share some of my own family's lived experiences with mobility challenges, and while there was a lot of diversity around the table, it was interesting to note that many common issues came up across the panel. Feelings of isolation, a desire for connectedness and a sense of belonging, and the importance of family were shared by both myself and many others who have experienced mobility in different ways.

A huge take-away for me was the importance of not only sharing our stories and our lived experiences, but the importance of listening to each other. We can learn so much from each other if we take the time to truly listen and to absorb what we are hearing. There was much discussion over the past couple of days about the benefit of positive collaborations among organizations and community groups, and my hope is that going forward we can work together to create a community that cares well for its most vulnerable populations. All people are worthy, regardless of our backgrounds or our abilities and we are all interconnected. As this conference showed, our understanding of the world is perhaps best informed by learning the experiences of others.

Thanks to Bojan Fürst for these wonderful photos!

Thank you to Memorial University of Newfoundland for hosting this satellite event, and to The Vanier Institute of the Family - a national, independent, charitable organization dedicated to understanding the diversity and complexity of families and the reality of family life in Canada.