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!

KoolKapes for Cool Kids

A couple of years ago, I introduced you to Koolway Sports - a company that designs and manufactures outerwear for people with disabilities, enabling them to achieve their maximum level of independence in all aspects of life. (You can see my previous posts HERE and HERE).

Brennen has outgrown his KoolKoat, which we enjoyed for several seasons and many winter adventures, and we have passed it on to a family who is now enjoying it with their own little boy.

This year, we are excited to try out the Koolway KoolKape! With a water-resistant outer shell and a warm layer of fleece inside, the KoolKape is practical, functional, and it looks really good! We struggle with dressing Brennen at times, so the ability to pull a cape on over his head in one smooth motion is a blessing. There are adjustable toggles on the sleeves to adjust for sleeve length and tightness, and a hood that can be removed or tucked under his headrest when not in use. 

We will be happy to put away our heavy coats and boots after what has seemed like an endless winter here in Newfoundand. Temperatures are finally beginning to rise above the deep freeze that we have been in, and +1 and +3 degrees is starting to feel a lot like spring! We were happy to see the sun yesterday, so Brennen and I took a leisurely walk around the grounds of Government House. The KoolKape is perfect for this type of weather, and Brennen was cozy and warm, and super comfy for our afternoon out and about.

Walking around yesterday with Brennen, enjoying the sunshine and blue skies, I felt reassured with every step that spring might be right around the corner. I think everyone just feels better when the weather is good, and I am all for feeling better! There is a sort of energy that is reborn in the city each spring, with people outside, parks and playgrounds full of kids and families. People seem happier when they are not rushing around with their heads down trying to block the cold sleet and wind from their eyes. I know I talk a lot about how we love spending time outside together as a family, I feel like a broken record, but my excitement is hard to contain at times when life feels good.. and yesterday was good! Hopefully this is the start of more beautiful spring-like weather!

Check out the KoolKape and other adaptive outerwear at Koolway Sports!

NL Human Rights Award Winner: Kim White

On December 4th, the Human Rights Commission of Newfoundland and Labrador announced the nominees for the 2018 Human Rights Awards. The annual award recognizes an individual who has made and/or continues to make a meaningful contribution to advancing and furthering human rights in the province.

"Each year, the selection committee faces the ultimate task of reviewing numerous well-deserving applications for this award. It’s never easy to choose and we are grateful to all of the applicants for their exemplary work to further human rights in our province. We are very pleased to be able to recognize people who have made such significant contributions to enrich our communities.”
Kim Mackay, Vice-Chair, Newfoundland and Labrador Human Rights Commission

This year's nominees included:
Blair Curtis - an 18-year-old university student and trans rights activist.
Gemma Hickey - a widely known St. John’s-based activist, poet, and soon-to-be author.
Anastasia Qupee - an Innu from Sheshatshiu, Labrador and the first female chief of her First Nation.
Craig Reid - a long-time advocate for inclusion for persons with disabilities.
Joanne Thompson - Executive Director of The Gathering Place.
Dane Woodland - a 27-year-old transgender activist residing in St. John’s,
and this year's Human Rights Award Winner, Kim White!

Kim White was born and raised in the rural community of Twillingate, but currently lives in St. John’s. At age three, she acquired a disability due to a spinal cord tumour. Experiencing life with a disability has definitely fed her desire to help create a “just world” but she also credits her parents’ passing along a strong sense of altruism and compassion. Educated at Memorial University with a Bachelor of Arts and a Bachelor of Education, Kim fulfilled a life-long dream to become a teacher. Fate intervened and led Kim on a career journey that was definitely ingrained in justice, but was outside her original vision of being “a traditional classroom teacher”. Kim’s life’s work has been mainly in the non-profit sector focusing on adult education, employment and career services, poverty reduction, and community development. Kim is the former Executive Director of the Coalition of Persons with Disabilities. While with the coalition, Kim’s work focused heavily on education and awareness; leading task forces, developing resources and facilitating info sessions and workshops for projects such as Emergency Preparedness for Persons with Disabilities, Inclusive Electoral Processes and Inclusive Customer Service.

Kim is also passionate about making change through volunteering. Kim's past volunteer work has ranged from being a Sparks and Brownie Leader to holding various positions with literacy organizations/ committees (including the PGI Golf Tournaments for Literacy) to being Chair of the provincial government's Buildings Accessibility Advisory Board. Kim currently sits on the board of The Duke of Edinburgh’s International Award as well as being Chair of Power Productions which is a new non-profit focused on making the performing arts more inclusive and accessible.

Kim has used every available platform - at work and in her personal life – to “teach” people how to shift the way they think about accessibility. Kim’s message is that all existing barriers we face in society have been created and they can be removed and prevented if people choose to remove and prevent them; if people choose to change their attitudes, if they choose to work together and if they truly understand that in doing so, they are choosing to make the world better for themselves and everyone.

On December 6th, the 2018 Newfoundland and Labrador Human Rights Award and Human Rights Champion recipients were announced at a ceremony at Government House. In her powerful acceptance speech, Kim spoke about how she tries to be "an authentic voice for those who cannot be heard." She said, "I recognized a long time ago that I could use my life to share a message with the world. That by doing so, people might see things differently and understand things differently. I thought my life could possibly help change the lives of others. Recognizing this has made my life very purposeful, very fulfilling, and has certainly provided me with lots to do!"

Kim went on to speak about her life's message, saying that while there are many, "One message is that I have an expectation to live a life of my choosing and live to my fullest desired potential.. expectations, such as getting an education, having a family, going to work, living a healthy and active life, and many other things.. that is to say, living with the expectation to choose to do all the things that other people get to choose to do, to live a full and meaningful life. And when those expectations are not met, for me and for others, because of barriers, I will push back and speak up because I know those barriers - those systems and those structures - are person made and they can be person un-made.. and must be person un-made."

"It is important for all of us to be reminded of our humanness and to see compassion in action, to have role models who display their 'will' for others to see.. and to look to others to help us collectively move towards a goal to do things differently, to do things better."

Kim spoke about love in the form of compassion, respect for others, justice and equality, and the fulfillment of our human rights. "And fulfillment of our human rights is not about charity. It is about removing barriers.. so individuals have equitable access to make choices; choices that others who do NOT face barriers get to make. This is a message that is hard for people to grasp sometimes - "equitable access", "equitable opportunity" - to be honest, I still struggle sometimes with how this applies in the real world my ownself but because it might be difficult or push our thinking does not mean it should not or cannot be done."

Kim ended her speech on a very poignant note, saying "My final message is that I am not extra-ordinary.. I am not Gandhi, I am not Mandela, and I am NOT Malala.. I am just Kim, but that is ENOUGH - it is enough to make change. I do not have to be extra-ordinary and none of us have to be. We can all live very ordinary lives and yet make great change if we are aware that ALL our lives are ALL our messages - and if we are aware of what that message is saying! Every day our words and actions tell the world something about us, about what we believe, what we value - what we will stand up for and what we won't accept. And I would ask you to stop and think about what you want your message to be and then go share that message with the world in any ordinary way you can!"

I was honoured to attend a celebration for Kim on Thursday evening at the Paul Reynolds Community Centre. I am so fortunate to call this beautiful woman my friend. I have learned so much from working with her and witnessing how she uses her gifts - both personally and professionally - to help better the lives of people with disabilities. She has so much empathy. I've never met someone who thinks about others' situations more than she does, and she doesn't just think about it. She does something about it. Kim is honest and real, and she is good at asking questions like, "How can I make that person feel loved?"

I love Kim for her heart and her vulnerability and the way she both pushes herself to be her best and yet accepts herself for who she is. I wish I could be more like that.

Congratulations Kim, on this well-deserved award. You are the definition of "compassion in action". You are a role model to me, and to so many others, and you make me want to do things differently, to do things better. Thank you for being my friend and for sharing your positive energy with all of us. Your work and your voice bring hope to so many.

Sheldon Crocker - One Step at a Time

I recently had the great fortune of meeting an incredible man named Sheldon Crocker. I was so happy to be able to connect with him and reading his story reinforces to me that there are so many things that connect us all as we try to find our life's purpose.

Sheldon identifies as being a person with a disability that he says isn’t a disability. His belief is that a person is only as disabled as they let themselves be. He says that people with disabilities, like everyone else, must be free and empowered to make their own choices and to live with the consequences. That is how we all develop our character and personality. That is the real meaning of choice and control.

He plays pool using just one hand in the competitive Canadian Poolplayers Association against players using two hands, and he has managed to win a Top Gun Award and has also competed at the national level in Las Vegas.   

When he was a child, it was thought that he would never be able to walk. Sheldon wore braces on his legs with a bar between his feet connecting both shoes until he was about four years old. He learned to walk by placing  his back against the wall and sliding along. He knew from a very young age the message that he still feels to this day: "If we don't push ourselves, if we don't step out of our comfort zone, if we don't set goals for ourselves then can we say we are really growing, progressing and truly living?"

Sheldon has pushed himself to achieve goals that many thought were unattainable. This year, he completed the Tely 10 Mile Road Race, and also recently participated in the Terry Fox Run here in St. John's.

Sheldon is actively pursuing a career as a professional speaker and is an advocate of equal rights for all persons with disabilities. The following is from a talk that Sheldon recently gave at an ExxonMobil fundraising event for United Way. Thank you, Sheldon, for allowing me to share your powerful story here as well.

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As an only child, I grew up in a small Newfoundland community during the 1970s and '80s. Being the only one there with a physical disability, I was picked on, laughed at and bullied by the other children because I was "different". My home life wasn’t the best either. I had no supports and was forced to grow up long before I should have had to. For really no reason besides getting a few marks lower than my cousins, my mother always compared me to them. "Why can't you be more like them?" she would say. 

My entire life I felt like I had to prove myself to people, that I was just as good as others. As a kid growing up with a disability, I wasn't able to participate in activities and sports like other kids. Just about every recess time while I was in grade 8, I'd stand there telling other students to line up in front of me in single file, and take turns punching me in the chest as hard as they could to see who could knock me across the floor the furthest, to see if anyone could make me feel pain. At least this way, I felt important and that people were paying attention to me and that I didn't appear to be this weak little disabled kid.

I started drinking at 11 and doing drugs at 13 to numb the mental pain. I had no confidence and terrible self-esteem. I felt like I couldn’t trust anyone who wanted to be close to me, because I was convinced that I was stupid and worthless. I struggled with addictions, homelessness and poverty. I was physically unable to cook for myself, so ate only microwaved processed food (when I saved enough money to do so). I stayed places that had no hot water, no heat and I ate donuts off the sidewalk. 

I told myself I had to be strong and get through it on my own. I lived rough and by my wits. I slept on friends' floors. I was happy, and I was miserable. But it was an amazing journey. All the while, I managed to go to two colleges and graduate with two diplomas. I helped people see life in a different way. "If you're surviving and trying to strive ahead with a disability then why are we holding ourselves back?" people would say to me.

After 7 years of this, I moved to St. John’s. I continued with college and fortunately, the Guidance Counsellor connected me with Emmanuel House, a residential treatment program of Stella’s Circle. Through this program, my life changed dramatically. I quit drinking and using drugs 17 years ago and never looked back.

Prior to getting connected to Stella’s Circle, my life was a real struggle. I didn’t have much hope for anything; I had mostly depressing dark thoughts. I didn’t feel like I fit in anywhere, didn’t feel included, even when out in society I mostly kept to myself. I didn’t see a way out of the darkness. With the help of Stella’s Circle and the direction they provided, they helped me see that there were people who truly cared. They were the light in the darkness that I held tight, and each day was brighter and less shaded because I was gaining hope for the future.

Upon leaving Emmanuel House, it was determined that I was eligible for the Community Support Program, another program of Stella’s Circle. Workers from the Community Support Program help me shop for groceries, cook meals, and clean my apartment. They have also provided moral support, encouraging words and at times, words of wisdom. 

I am proud to say that I graduated from The Employment Program - New Beginnings offered by Stella’s Circle, in 2014, and I feel like every day is a new beginning. This program has also helped me to feel empowered and realize that I am capable of working. 

My self-esteem and self-confidence have grown significantly with the help of all of the programs at Stella’s Circle, including the Inclusion Choir. It has been one of the most therapeutic and best things I’ve ever been a part of. It has helped me step out of my comfort zone, feel less isolated and I’ve grown tremendously as a person. I just recently celebrated my anniversary of being in the Inclusion Choir. I call it my anniversary of liberation out of silence. For most of my life, I’ve been told: “Kids are to be seen not heard.” I felt like I was without a voice. The Inclusion Choir is one of, if not the most positive thing that I’ve ever been a part of in my life. In the past, I tried to keep my distance from the events and programs of Stella’s Circle because of the social stigma I felt attached to it. It’s so awesome to see each year how the social stigma around mental health becomes less and less with the great work of this organization and others like it. 

With regards to my physical environment, I am grateful to have had a roof over my head for the past 19 years. I don’t have to worry about sleeping on park benches in January anymore. Working with an occupational therapist, I’ve had my bathroom adapted so I can be independent with my personal care. I have a hospital bed that is comfortable and adjustable that I can get in and out of. I have modifications done so I can reach my clothes hanging in the closet. I am able to access my computer through voice command and the setup is ergonomic. These changes at home have helped raise my confidence to look for work and access the community. The older I get, the more I feel these services will be useful in helping me maintain an adequate quality of life.

I believe that understanding my personal experiences and the support that has been necessary to help me live in the community is valuable. It will help develop an understanding of what support is needed to continue to help people, like myself, age successfully in the community. No person anywhere, especially here in this country, should live in the shadows or suffer alone, because they can’t afford treatment. I've learned through my connection with Stella’s Circle that fears limit us and our vision.

This may seem really obvious to a lot of you, but it wasn’t for me, so I’m going to say it anyway: There is no reason to feel embarrassed when reaching out to a professional for help. There is no reason to be ashamed and most importantly, no need to be afraid. People do not need to suffer. There is nothing noble in suffering, and there is nothing shameful or weak in asking for help. I am thankful for the help I received. If people hadn’t had the strength to encourage me to seek professional help, I don’t know how much longer I would have been able to even exist, to say nothing of truly living. 

Believing that it takes the whole community working together to change social conditions is essential. There is hope for everyone, work hard, believe strongly, focus, be aware of your thoughts and we can all change our lives if we want to bad enough. The journey of life is taken one step at a time. 

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One of the primary reasons I speak out about my mental illness, is so that I can make the difference in someone’s life that I wish had been made in mine when I was young, because not only did I have no idea what Depression even was until I was in my twenties, once I was pretty sure that I had it, I suffered with it for another ten years because I was ashamed, I was embarrassed, and I was afraid.

Those of us who live with mental illness need to talk about it, because our friends and neighbours know us and trust us. We need to share our experiences so someone who is suffering the way I was won’t feel weird or broken or ashamed or afraid to seek treatment. So that parents don’t feel like they have failed or somehow screwed up when they see symptoms in their kids.

People tell me that I’m brave for speaking out the way I do, and while I appreciate that, I don’t necessarily agree. Firefighters are brave. Single parents who work multiple jobs to take care of their kids are brave. People who reach out to get help for their mental illness are brave. I’m not brave. I’m just a man who wants to share his story with the world, who hopes to speak out about mental health so much that one day, it will be wholly unremarkable to stand up and say the words: "My name is __ __. I've lived with Chronic Depression, and I am not ashamed."

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Sheldon has had the opportunity to share his powerful message at several local events, and he welcomes requests from businesses and organizations looking to hire an inspirational speaker. Sheldon can be reached at coppertop25@yahoo.com

No Excuses. No Limits.

You guys are going to be so tired of hearing me talk about Luca 'LazyLegs' Patuelli, but I just can't help myself! If you saw my last post, you know that Luca is here touring the province this week, and I couldn't be more exited! After hearing him speak on the panel at MUN about 'Reframing disABILITY' a couple of days ago, it was incredible to see him perform and present his "No Excuses. No Limits." program at City Hall here in St. John's.

Throughout his career, Luca has been able to share his message with over a million audience members world-wide. Offering a charismatic, interactive, and dynamic presentation on his own successes and failures, Luca spoke personally about how perseverance has gotten him to where he is today.

Luca talked a lot about his dance career, and demonstrated how he uses his upper body strength to create a unique dance style that has garnered him worldwide recognition. Luca is the creator and current manager of the ILL-Abilities Crew, and he co-founded Project RAD, which was Canada's first inclusive urban dance program offering people of all ages and all abilities the possibility to participate in accessible dance studios.

Luca explained that in Hip Hop, the words 'bad' and 'sick' mean good, and so he uses the term 'ill' in ILL-Abilities to mean really good. It represents an adaptation of power, strength, and creativity. Believing in yourself to accomplish anything you set your mind to. Creating advantages from disadvantages, and exploiting your capabilities - to live life to the fullest potential.

Thank you to Alick Tsui for capturing these images! 

Luca's performance was impressive. His presentation was remarkable, and his message was important: "No Excuses. No Limits." I've been saying it all week, and I'm not done talking about him yet! Luca will be performing again to a sold-out crowd at Easter Seals House on Saturday, followed by a dance workshop and social. I am excited to see how Brennen responds to him. I know he will love the music and the hip hop beats, but I am not sure if he will be up for showing off his sick moves on the dance floor. Maybe we will practice a little at home before the weekend. I'm always up for a pajama dance party!

"Dance challenges us to surpass our limitations by discovering strength within. So, live your life to the fullest and dance beautifully!" 

- Luca "LazyLegz" Patuelli

Jooay: Connecting Children and Youth with Disabilities to Leisure

This past September, I attended a Brainstorming Event: "Working Together to Promote Participation", held in Montreal (see HERE). Our discussion focused on the best ways to promote leisure participation of children with disabilities and to engage families in the community.

The meeting was hosted by the Jooay Team, lead by Dr. Keiko Shikako-Thomas, Canada Research Chair and Assistant Professor at the School of Physical and Occupational Therapy of McGill.

"Participating in sports and other leisure activities is an important part of childhood development; however, accessing appropriate activities and information is a challenge for children with disabilities. We created "Jooay", a mobile and web-based app, to provide families with information about appropriate leisure activities available in communities across Canada."

The Jooay App was launched in Spring 2015 to overcome the lack of access to information about inclusive leisure activities, and to create an online community of support through a mobile-health solution. Jooay is an App where parents, youth and other users can exchange information, rate and comment on activities, creating a community and building networks around adapted and inclusive leisure opportunities.

Participation in sports and other leisure activities is critical to the physical and mental health of all children, and essential to their social development. However, it has been found that engagement in leisure activities is low for children with disabilities compared to peers of the same age, both in terms of frequency of participation and diversity of recreational activities in which they partake. Families, healthcare professionals and educators have indicated that the lack of information about existing resources is a significant barrier to children’s participation and that a peer mentorship program could help facilitate this process. To address this issue, the Jooay App was created by Dr. Keiko Shikako-Thomas and Dr. Annette Majnemer, faculty members at the School of Physical and Occupational Therapy at McGill University.

I believe that participating in recreation and leisure activities is important to all individuals, regardless of ability. It is not only important in maintaining fitness, but it is also a means through which people have fun, meet new friends, and develop skills and competencies. As a parent of two children with disabilities, I also know how challenging it can be to find activities that allow my children to get involved and have fun. My son, Brennen has been involved in a number of adapted recreational programs over the years, and while our goal, always, is to provide him with meaningful life experiences and encourage social interaction, having him involved in sport and other extracurricular activities has increased the quality of life for our whole family.

I am now the Jooay Ambassador for Newfoundland and Labrador, and will be working collaboratively with the Jooay Team to help identify adapted leisure activities, to provide information about Jooay and adapted activities to children and families in our region, and to actively help promote participation for children and youth with disabilities across Canada.

Please contact me if you would like more information on the Jooay App, or if you know of an inclusive or adapted activity that can be added to our database. I would love to hear from you!

This project is part of the Child-Bright Network: A Canada-wide, patient-centered research initiative, including 12 research projects to improve the life conditions of children and youth with brain-based disabilities and their families.

Jooay is part of the Childhood Disability LINK community.

Future Planning for Persons with Disabilities

As a parent of a child with a disability, it can be frightening to think about the future. I have written before about how I worry what will happen to my son when I am no longer able to care for him, when I am no longer here, or when his needs surpass my ability. It's a terrifying thought. Sure, we are managing quite well right now, but the truth is that children with disabilities grow up to be adults with disabilities, and with that comes a whole other host of challenges.

Leighton Jay is a parent of a young man with a disability. He has been a strong advocate for his son, and for individuals whose lives are affected by intellectual or developmental disabilities. He is committed to facilitating the empowerment of people who are often marginalized, and who live with significant challenges in their lives. He is passionate about enabling all people to have meaningful roles in society, exercise self-direction in their lives and develop friendships and social connections.

We were fortunate to have Dr. Leighton Jay, Global Disability Expert here in Newfoundland recently, all the way from Perth, Australia, to share his wisdom and experience with regards to future planning for persons with disabilities.

The Newfoundland and Labrador Association for Community Living and the Coalition of Persons with Disabilities NL hosted several information sessions across the province while Leighton was in town.

I attended a workshop on 'Claiming Full Citizenship for Persons with Disabilities', and another on 'Shared Responsibility'.

"When it comes to supporting a person with a disability, parents and caregivers can't always be expected to do it alone. A 'Shared Responsibility' approach looks at how individuals, families, community groups and government can all work together to make sure that people are supported and have a plan for their future."

This session also covered information on housing for persons with disabilities, supported decision making, future planning, and home supports. There were lots of thoughts expressed and ideas shared, and it was wonderful to see so many people with invested interested in the well-being of persons with disabilities coming together to support each other and to learn how we can best care for our loved ones with the resources that are available to us.

I was also happy to attend a Capacity Building Workshop, in which Leighton Jay spoke about the new Individualized Funding policy that will be implemented by the Government of Newfoundland and Labrador next year.

Individualized Funding is a new way of delivering disability supports, offering much more individual choice and focus on what the person wants or needs. Individualized Funding allows persons with disabilities to be their own boss - to have choices in who supports them, who is invited into their home, and who is (or is not) involved in their personal care. It hinges on recognizing and respecting the ability of the person to make decisions about matters which directly impact their daily life. 

"Individualized Funding recognizes that funding, services and supports should not define the individual's needs, but should respond to, and be built around them. Further, it recognizes that these needs must be identified by the individual, and not by the professionals around them. Choice and greater control by individuals over the supports and services that are part of their lives are key aspects of IF."

Individualized Funding already exists in six Canadian provinces, as well as in the United States and Australia, and it has been shown to achieve higher levels of satisfaction and enhanced inclusion for people with disabilities.  

Without getting into my own personal frustrations with the way community support services are currently delivered here in our province, I will just say that there are issues. The main problem, for me, is that the application is financially based, not needs based. For us, this means that even though my child has a severe and permanent disabling condition, we have never qualified for any type of support or service offered under the Government of Newfoundland and Labrador's Community Supports Program (CSP).

I voiced my concerns at this meeting, and while I was in a unique situation around the table, I know that I am not unique in the community. There are many families like mine who have children with complex disabilities, children who are medically fragile, and who require 24 hour care. We know many families who are struggling to meet the needs of their children - trying to balance the doctors appointments with work, school, therapies, family life, home programs, medications, equipment needs, sleepless nights, hospital stays, reports and meetings and all of the other extras that come along with their child's condition. There are extra and significant costs in caring for a loved one with a disability. The financial burden is great, and the physical and emotional demands can be exhausting. Caregiver stress and burnout is a real thing and it could be prevented if families were offered some form of support - whether it be respite care, financial assistance for medical equipment, or another intervention service. 

As parents, we all desperately want to do the right things for our children, and we try our absolute hardest but sometimes we need help. They weren't lying about it taking a village. We are not meant to do this on our own.

I am excited that people are talking about these important issues. There are some wonderful components to the new Individualized Funding policy, but there is no plan to change the application process or the qualification requirements, so while I am happy to have been part of the discussion, it is unfortunate that the outcomes will likely not affect working families like mine.

It was a pleasure to meet Dr. Leighton Jay, and to have had the opportunity to learn from him over a number of days. He has great ideas with regards to future planning for persons with disabilities, and he lives what he speaks. His experience and advice about helping to pave the way for a brighter future for children like mine is invaluable. Knowing there are new opportunities opening up for people with disabilities certainly gives me hope and empowers me going forward as I advocate for my son to have the best life possible. That is my dream for each of my children - simply, the best life possible.

To assist with future planning, the Newfoundland and Labrador Association for Community Living is offering a two-part webcast series for families on 'Creating Financial Security for Persons with Disabilities'.

Part One: The Registered Disability Savings Plan (RDSP) - Wednesday, November 29 at 7:30 p.m. NST 

Part Two: Financial & Estate Planning - Tuesday, December 4 at 7:30 p.m. NST

To register, click HERE!

Adventures with Serial Casting

Brennen had botox injections a couple of weeks ago, which I wrote about HERE.

The botox helped to reduce the tone and muscle tightness in his left leg, which had become a bit of an issue and was causing his legs to pull to one side, putting his hip at risk of dislocating (once again). 

Since then, he has been undergoing serial casting to hold and stretch the muscles in his leg, and to correct a turn in his foot that had become quite pronounced. The casts hold his foot and leg in a position where the muscle has a slight amount of tension, causing it to adjust and become longer and more flexible. With serial casting, a new cast is applied each week, with the angle being changed slightly to stretch the muscles and move the joint a little closer to the correct position.

We know that Brennen will never walk or bear weight through his legs, but we want to do everything we can to promote his highest level of function. Serial casting will improve his passive range of motion, and will decrease the risk of him needing further corrective surgeries down the road.

He had one week with the purple cast (that he picked out himself!), then a second week with a shiny green cast. Other than scratching up his 'free' leg, the casts don't seem to bother him at all! We have been out on the go and Brennen has been quite happy!

We took a walk around Quidi Vidi the other day, and just had to stop for lunch at the new QVFC - Quidi Vidi Fish and Chips truck! 

Oh my God, you guys. The "Iceberg Beer Battered Cod" is to die for!!

So, we are pretty sure this will be the last week of casting. Brennen will get his cast off on Wednesday, and have a new AFO made to hold his foot in an aligned position, and to keep the flexibility that was gained by serial casting. We also have a fancy new hip abduction pillow that he uses at night to keep his legs apart. Fun stuff.

I have to say that even with all of the appointments and casts and botox and seizures, and everything else that comes along with having a child with a complex disability, we have been enjoying the summer, and making the most of the time we have to spend together before Brennen goes back to school in a couple of weeks! It's been nice to relax a little bit these past few days. We get so caught up in the craziness of our lives - the constant pressures, the demands of our children, and the accumulation of many little stresses that can make things start to seem really hard and out of control, it's easy to forget that much of life is actually not so hard! It's days like this one, spent enjoying the sunshine and warm temperatures and a leisurely stroll around the most beautiful neighbourhood that brings us a welcome reminder of that balance - the good and the ugly, the hard and the easy. It's a complicated mix, and the weight of everything in life is constantly shifting. We are in constant motion, tipping the scales and readjusting, but the love we feel for our family is an overpowering force and things always have a way of balancing out in the end.

There are so many fulfilling moments in between the madness, and here is the truth: I love my life because it has an abundance of both.