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!

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.

Tulip Tales: Lilly

Another Tulip Tale to share this week! I am excited to introduce you all to the sweetest little girl named Lilly. Her mom, Sammi shares her story.

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I had a typical pregnancy, with nothing unexpected or out of the ordinary. At 35 weeks, I was admitted for high blood pressure and after many ultrasounds I was told that Lilly would be born with just one kidney. At the time, that was the only thing the ultrasounds picked up on, and we thought, ok that’s fine there are a lot of people who live full lives with one kidney.. not a big deal. Little did we know, there was a lot more going on than what we thought. 

At 38 weeks, I was told that I would have to be induced because Lilly wasn’t gaining any more weight. She arrived on May 20th, 2012 and that was just the beginning of a very long road. 

I remember asking over and over again "Is she ok?" because I didn’t hear her cry or make any newborn baby sounds. They rushed her off to the NICU at Western Memorial Regional Hospital in Corner Brook and I wasn't able to see her until 5 hours later. By this time there were a million things going through my mind! They told me that Lilly had to be airlifted to the Janeway Children's Hospital in St. John’s, but they couldn’t tell me exactly what was wrong.

Lilly had deformed ears and a very small jaw, which was causing breathing issues for her. We later learned that our daughter was born with a rare chromosomal disorder called "Cat Eye Syndrome" (a duplication of the 22nd chromosome) which affects between 1 in 50,000 and 1 in 150,000 people. We had no idea how long we would be in St. John’s, but we didn’t care. As long as she was safe and was getting the care that she needed, that was all that mattered. There were some days that were terrible and we didn’t know if she would pull through and there were some days that were really great. It was a roller coaster, and absolutely the hardest thing we have ever experienced but she is the highlight of our lives and we truly are so grateful to have such an amazing little girl!

When Lilly was four months old, her airway became very critical and we were told that she would need a tracheostomy and g-tube placed. I was so scared but I knew it was going to be the best decision for her. After a few months of healing and my husband and I going through training for trach and g-tube care, the day finally came when we were able to bring our precious girl home. 

For the first few years we had appointments after appointments along with rehabilitation therapies and more surgeries. Lilly received cochlear implants in 2013 and had a jaw distraction surgery in 2014. The jaw distraction helped to move her lower jaw forward and make her airway bigger. We are hopeful that she may be able to have her trach removed sometime in the near future! 

Today, Lilly is in Grade 1 and loves going to school and being around her friends. Of course, she has many obstacles to overcome but she has come so far since the day the doctors first told me she might never walk or do many of the things a typical child could do. Lilly is deaf, blind in one eye and developmentally delayed, but we continue to give her the best life possible and include her in everything she can handle because this girl is a fighter!

This is a quote taken from Sammi's Facebook page, which shows just how much love she has for her little girl;

"As I sit here and watch my daughter sleep, I wonder how I ever got so lucky to be her Mom. Some days are harder than others but that’s what makes the good days so much more special. I know you don’t truly understand right now but as you get older I hope you realize that your Mom has always fought for you and will always fight for you and she loves you with every bone in her body. You gave me meaning baby girl, and I’ll be forever grateful for that. I still remember the day the doctors asked us if we want them to do whatever it takes to keep you alive, one of the hardest things I ever had to hear, but it just made me fight for you that much more! I left the room that day because I didn’t want to feel weak around you and as I was sitting in the family room this beautiful nurse talked to me and she said "Lilly will write her own story, no one can write it for her." And wasn’t that true! You have overcome so much and will continue to overcome many obstacles in life but just know you never have to do it alone."
-Love Momma

Sammi, thank you for sharing your daughter's story, and thank you for making me aware of a condition that I had never heard of before! I have said many times that when you have a child with a disability, regardless of the diagnosis, many of the feelings are the same. As parents, we all want the best for our children - we want them to be happy and to know that they are loved. Your sweet Lilly certainly seems to have a lot of love around her, and that beautiful smile of hers says everything! I love how you speak about your daughter, as this is exactly how I feel about my own son. I feel so lucky to be his mom, and am so thankful that he is mine. Lilly will continue to surprise you, overcoming challenges and living a life with independence and a strong spirit. She is a treasure, and I wish your family nothing but happiness and love! 

* If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com 

Tulip Tales: Trent

You guys! I am excited to share a new Tulip Tale with you all today, and I have several more in the works! This series really is my favourite thing about my blog. I just love being able to share the stories of these remarkable children and families. I read them over and over because they are all unique and all so important. I am continually encouraged and challenged to share my own personal story - to share a glimpse through the window of special needs parenting, but it is in reading the stories of other parents that I find comfort and learn so much.

Trent Gerald James Vincent was born on December 4th, 2012, in Corner Brook, Newfoundland. His Mom, Abby shares his story.

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With a seemingly healthy pregnancy, I gave birth just one day before my due date and was sent home with a "perfectly healthy" baby boy. We had no reason to think there was anything wrong.. until there was.

When I look back on the day of my delivery, I remember the overwhelming rush of love and pride along with a sudden worry of knowing that something was just not right. I remember being shunned during my labour pains for being "a baby having a baby". At just 15 years of age and about to deliver a baby of my own, I felt that I was not being taken seriously. When I was 9 cm dilated, my body began to push and I knew it was time for Trent to make his arrival. The next thing I knew, I was getting an epidural to relax me as we waited for the doctor to finish up a meeting. This was 14 hours after first arriving at the hospital so naturally my body was drained and I had fallen asleep. The doctor finally arrived and said it was time for me to start pushing. I was tired, weak and though I tried as hard as I could, the baby was just not moving. With the help of the doctor's foot on the hospital bed and a vacuum extraction, with a few tugs he was out. He did not cry. He was blue, grey and lifeless. He did not suck from a bottle and did not make a sound. I felt in my heart that there was something wrong but I kept being told that he was perfectly healthy and that we were "lucky" because he was a very content and quiet baby. With that, we were released from the hospital. 

As the days went on there was still no improvement. I remember the long nights trying to feed Trent his bottles - it would take multiple hours just to get two ounces into him, and he spent ninety percent of the day sleeping. He did not cry when he was hungry or had a dirty diaper, he simply slept. Being a worried first time mom, I set alarms to feed Trent regularly, making sure he would not go hungry or dehydrated. 

When he was two months old, I was feeding Trent his bottle when I felt him become more lethargic than usual. I immediately took the bottle from his mouth and tried to get some movement out of him. He wasn't responding. He turned completely blue and was lifeless. I jumped up and screamed to my fiancé and we rushed to the hospital with our baby in my arms. I was hysterical. I could feel my little boy fading away from me. We were told that he had choked on his milk and that he has acid reflux, but my motherly instincts kicked in and I demanded they do more testing before sending us back home. 

After an EEG, the doctor came running back to the room in a panic. His brain scan showed seizure activity and we were airlifted to the Janeway Children's Hospital within the hour. The most terrifying moment in my life was the day we were told our little boy would be in a vegetative state and there was nothing they could do to help him. They told us that we should prepare ourselves for the worst. Trent was diagnosed with epilepsy and global developmental delay. After spending a few months at the Janeway doing more testing and talking to specialists about our new life with Trent, we were once again sent home, feeling defeated and even more confused as to how this could happen to my little baby. 

Trent has brought us closer as a family. We only want the best for him, to make sure he has as much support and love that he needs and we are determined to push through every obstacle together. Trent is a wonderful big brother to his two year old brother, Jack, and as you can see, there is a lot of love shared between them!

Beating the odds, Trent is now six years old and is still our pride and joy. He is such a happy, content and loving little boy. He continues to brighten our world and teach us the true meaning of life each and every day! Although the past six years have been a struggle from multiple therapy appointments, doctors appointments, ISSP meetings, checkups, numerous phone calls, and the constant battle for inclusion services, I can not imagine life without him. We face new obstacles every day as he grows and gets bigger, but we do so with a smile. Our main goal is to give our son the best life possible, as he has made our lives so full. Who knew someone so small could impact and brighten your life in such a drastic way! I am so thankful to be his Mom!

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Thank you so much, Abby for sharing your son's story! He is such a beautiful boy, and reminds me so much of my own son, Brennen. I remember how hard it was in those early days, shortly after Brennen was born. I just knew in my gut that something was wrong, but no one took me seriously either, and like you, I remember feeling so helpless and so alone and I would never, ever want to go back to that place. It is difficult to imagine, when you are in the thick of such a trying time, that things are going to work out and that you will find any sense of peace. It is amazing what we as mothers are capable of. Our strength and resilience are unwavering, fueled by our intense love for our children. Over the past fourteen years, I have learned a lot about myself as a mother. I have also learned a lot about grief and acceptance, the awareness they can bring, along with a distinct gratitude for the life we are living.

Abby, I am happy to see that you have a loving family around you for support, but know that if you ever need someone to talk to, I am here.  

* If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  

You Must See This Play!

Earlier this year, I attended a stage reading of "Crippled", a play in development by playwright Paul David Power. (I wrote about that HERE.) It was such a powerful and emotional performance. I fell in love with the story and the characters and just knew that this play was going to be something special.

“Crippled” is about Paul’s experience living with a physical disability since birth as well as dealing with grief after the death of his partner. The piece is designed to show that a disability does not define a person’s overall identity - there are many facets to a person and physical difference is just one component. “Crippled” shows rather than tells the importance of diversity, understanding and acceptance. It is unlike any other work dealing with disability currently on our provincial theatre scene.

Paul has been developing "Crippled" for two years, and has been successful in securing a grant from the Canada Arts Council’s Cultivate Grant Program – dedicated to supporting deaf and disability arts in Canada.

This past August, a working version of "Crippled" was performed at the Fundy Fringe Festival in Saint John, NB. This presentation received 5 star reviews and went on to capture the award for Outstanding Production at the festival!

I am thrilled to now be on the production team for "Crippled". Watch this quick video, to see why this production means so much to me!

"Crippled" is premiering at the historic LSPU Hall (Resource Centre for the Arts) here in St. John's on Wednesday, February 7th, and running until Saturday, February 10th. Tickets are available now! Click HERE to purchase!

The incredible team at Power Productions is raising the bar when it comes to theatre accessibility in Newfoundland and Labrador. It is Paul's hope that “Crippled” will not only entertain, but also inspire discussion and action to expand the diversity of our local theatre scene for artists living with a disability. Historically, in our province, accessibility to events, including the arts, has always come as an afterthought. A priority of this production is to play a leadership role in demonstrating how a community event can be truly accessible. “Crippled” will include such access supports as ASL interpreters, audio description, pre-show sensory set visits, and extra space beyond the norm for wheelchairs and other mobility aids.

ASL interpretation is available for the 8:00 pm shows on February 7th and 10th. Audio description is available for the show on February 9th at 8:00 pm, as well as February 10th at 2:00pm. This matinee is also a relaxed, pay what you can performance.

For more information about the accessibility accommodations for "Crippled", check out the Accessibility Guide that was developed in partnership with InclusionNL.

I truly believe this is a performance that everyone should see. Not only those in the disability community, or the LGBT community, or the arts community, or the whatever community. "Crippled" tackles hearty issues relevant to all of us as human beings. Paul tells his story through soulful and carefully selected words, hiding nothing and expressing his true creative self. In doing so, he removes all barriers, labels, and stigma, and generates meaningful conversation around the themes of inclusion, acceptance, prejudice, loss and mental well-being.

As you know, I am eager to support those who strive to make things better for people with disabilities, and even more so, I am happy to support people with disabilities who are striving to make things better for themselves, but Paul is not just a 'disabled actor and playwright'. He is a talented artist - a creative force who is passionate about his work and he has an incredible power to make people feel deeply.

I'll stand behind anyone who does that.

For more information, visit www.crippled.ca

Today's Kids In Motion

I am so honoured to be featured in Today's Kids In Motion magazine! If you're not familiar, Today's Kids In Motion is a Canadian pediatric health publication for families of children with special needs. I was thrilled when they reached out to me, asking if I would share an article for the Fall 2017 issue of the magazine.

My article is HERE! and I have copied it below. It might be a good read for anyone who is new to my blog!

Brennen's Unexpected Journey

Brennen was born full-term, two days before his due date, in Sacramento, California. It was a normal pregnancy and delivery, although I replay it constantly in my mind, trying to recall if there was something I’d missed. I was sent home from the hospital with a “healthy baby”, and we were over the moon with joy and love for our precious baby boy! Until he started crying… and crying… and crying. You might think I’m exaggerating, but it is the truth - he didn’t do anything but cry for 5 whole months. I knew there was something wrong, but had no idea what. We went back to our doctor every other day. She told me he was a “colicky baby” and he would outgrow it. That didn’t happen. Feeling like I was not being taken seriously, and getting no sort of resolution, Brennen and I left California and came home to Newfoundland where we had the loving support of my family.

Almost immediately after arriving back home, we got in to see a pediatrician at the Janeway Child Health Centre. Though I knew there was something wrong with my child, I was not prepared for what I heard on that first encounter. Words like “serious”, “urgent” and “critical”. All of a sudden we were in an emergency situation and needed a battery of tests to be done right away! We were sent to neurology, cardiology, genetics, ophthalmology and audiology, among others. Brennen had a CT Scan, MRI, EEG, EKG and ultrasound all the matter of days. It was a whirlwind of tests and probes. I couldn’t believe what was happening. I knew that Brennen was behind on his milestones (ie. hadn’t met ANY), and I knew something was not right, but I wasn’t prepared for what they were about to tell me. My perfect little baby boy had something seriously wrong with him and there was nothing I could do about it. It was such a helpless feeling. I knew they were testing for conditions that I couldn’t even bring myself to contemplate. We were referred to physiotherapy, occupational therapy and speech therapy, all to begin immediately.

When Brennen was eight months old, after blood test after blood test had come back negative, we were given the diagnosis of Spastic Tetraparetic Cerebral Palsy. Spastic meaning stiff muscle tone, and tetraparetic meaning that it affects all parts of his body. As difficult as that was to hear, it was almost a relief. They say the scariest thing in life is the unknown, and now at least we knew what we were dealing with. It wasn’t going to go away. It wasn’t going to get better, but it wasn’t going to get worse.

As well as I think I handled the diagnosis, I was surprisingly knocked off my feet by the suggestion that I join a “CP Support Group”. Was it THAT bad that I needed a support group?! Support groups, I thought, were for people dealing with some sort of horrific tragedy or loss. I wasn’t one of those people, was I? What I was about to learn was that I was going through both of those things, and all of the emotions that go along with them. The tragedy of what had happened to my perfect unborn baby, and the loss of the child that I thought I was going to have. It was a mourning process, for sure.

When I think back on those early days, when I thought I was alone in the world, and that I would never have any sort of “normal” life again, I wish I could go back and tell myself that it really was going to be ok. When I look at our life now, I could never imagine things any other way. Brennen is a happy boy who loves life and spreads that love with everyone who knows him. He brings us so much joy every day and has taught me more about life than I ever could have imagined.

The past twelve years have been filled with doctors’ appointments, surgeries, therapy sessions and ISSP meetings. We have spent a small fortune on medical equipment, adaptations and therapy devices. We have learned who our friends are and who they are not. There have been dark days, but they make the good days that much better.

Most recently, Brennen underwent a spinal fusion surgery where he had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. He has been doing surprisingly well since his surgery, which is great, but I cannot deny the true and very real pain of knowing that my child has to experience a life that has so many struggles. Brennen is amazing and he fights it with everything he's got. His resilience, determination, and courage are far greater than my own. The journey we are on is a unique one, and I have come to terms with the fact that there will always be challenges and road blocks along the way. In the meantime, I will invest all of my time and love and energy into my son and supporting every single one of his complex needs.

Brennen is now headed into Grade 6, and I am thankful that he has wonderful teachers who love and support him. Brennen gets lots of attention and cuddles and love at school, and really, that is what I want for him. I want him to be happy and to be surrounded by love. That is all. Anything beyond that is a bonus.

This whole unexpected journey has taught me so much about myself, my relationships, and about love in general. I never could have fathomed that in such a short time, Brennen would change my world in the best way possible. He continues to teach us what strength truly is and we are so inspired by our brave little boy. Life is good, because he is in it.

A huge thank you to Today's Kids In Motion for featuring us in their magazine! I am thrilled to be part of such a wonderful publication that deals with issues facing parents of children with disabilities in a positive way, and celebrates the joys of one of life's greatest gifts.

-Julie xo

Everyday Power

Have you guys been following the #EverydayPower campaign?! Each day this month, the Coalition of Persons with Disabilities Newfoundland and Labrador is sharing video and photo stories in their social media campaign, designed to raise awareness in our communities and challenge disability stereotypes. Along with photographs and collages, they will be releasing a dozen video stories throughout the campaign, each providing a short, poignant snapshot of a positive aspect of everyday life for persons with disabilities. In doing so, they’ll share their experiences, show their personal power and help build more inclusive communities.

This is Brennen's Everyday Power :

"Brennen has cerebral palsy. He is non-verbal, and uses a wheelchair for mobility. Despite his many challenges, he is a happy little boy who loves spending time outdoors. Brennen appreciates the simple things in life - the sound of moving water, the rich scent of pine trees, the changing colours of the leaves - and he teaches us to do the same"

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!

Dear Everybody

Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) recently launched a national public awareness movement and campaign called ‘Dear Everybody’ focused on challenging and breaking down disability stigma and stereotypes. It will focus on major issues such as employment, bullying, friendship, education, and health care providing tools that will educate the public about the role they play in building an inclusive and equitable society that includes young Canadians with disabilities.

While kids and young adults with disabilities have the same basic human needs as other kids and young adults – such as fairness, inclusion, and economic security – statistics show that barriers caused by stigma prevent those needs from being met.

"As a kids’ hospital, we feel strongly that you can’t care for a child’s health without thinking about their future," says Julia Hanigsberg, president and CEO of Holland Bloorview. "We have an important role to change minds about disability. We see the strengths that come from a more inclusive and accessible society. We believe in a world of no boundaries, and it’s time to build it together as allies."

In Canada, there are at least 400,000 children and youth (ages 0 to 24) with a disability, including physical, intellectual, cognitive, and many others. Many forms of disability are invisible but equally stigmatized. Many people with disabilities routinely experience staring, whispers, name-calling, social exclusion, bullying, and outright discrimination – otherwise known as stigma.

The impact of stigma is sobering:

•  53 per cent of kids with a disability have zero or only one close friend. They also have lower participation rates in camps, volunteer work, recreational activities, and part-time/summer jobs.
• Kids with disabilities are two to three times more likely to be bullied than kids without disabilities.
• Only 49 per cent of Canadians with disabilities aged 25 to 64 are employed compared to 79 per cent for Canadians without a disability.
• One-third of people with disabilities say they have been denied a job because of their disability. Likewise, 24 per cent say they have been denied a job interview.
• 25 per cent of kids with disabilities under 15 in Canada have unmet educational needs.
• 24 per cent of kids with disabilities live in poverty compared to 15 per cent without disabilities.

"Attitudes and stigma create actions that shape our world – it’s time to break the cycle and enable everyone to exercise the rights and opportunities they deserve," says Hanigsberg.

Dear Everybody targets disability and stigma by putting the voices of kids and young adults with disabilities front and centre.

The advertising campaign features an open letter written by kids and young adults with disabilities that answers questions that aren’t being asked and brings individuals face to face with their own biases. The website will be a source of information and resources, including a position paper with recommendations for teachers, employers, health-care providers, allies, and others that can be shared, start conversations, and end stigma.

The letter starts with "Dear Everybody, We live with our disabilities every day. You might think that’s the biggest problem but it isn’t. The biggest problem is the world that’s full of stigma around living with a disability. People are afraid to offend so they avoid asking questions or making conversation. But we need to get these answers out there, we need to start talking. So we’re putting it all out there. Every line of our letter helps people understand our lives, puts a little information into our world and takes a little stigma out of it." It goes on to include some straight to the point tips, like "Talking to someone with a disability like they’re a baby is rude, unless they’re a baby." and "If being around someone with a disability makes you feel uncomfortable, you aren’t around someone with a disability enough."
Click HERE to read and share the full letter!

"What I hope for is a world without stigma, without inequality, and with an increased understanding about disability," says 17-year old Maddy Hearne, who has sustained six brain injuries and faced stigma from her peers. "I support the movement and want everyone – kids and young adults like me – to have unlimited opportunities in every part of their life. Dear Everybody is important because for the first time, our voices are front and centre and answering questions that break down stigma. Everyone can, and should be, treated equally regardless of their disability."

The Dear Everybody campaign is the beginning of a five-year effort to change attitudes and behaviours in support of kids and young adults with disabilities, and I am all for that!

For more info, visit DearEverybody.ca 

 

Thoughts on Medical Aid in Dying

Many parents of children with special needs in this province received a swift punch in the gut this week when a news story came out about a mother in St. Anthony who was told by a doctor that assisted suicide was a recommended option for her daughter.

Here is a link to The Telegram article and a related article on CBC.

The Coalition of Persons with Disabilities - NL has released a position statement in response to a recent article in The Telegram around Medical Aid in Dying (MAiD).
 
Coalition Executive Director, Emily Christy, was deeply troubled when she read the article “Repulsed by Suggestion” (Section A6) on July 21, 2017. In her Letter to the Editor of The Telegram, Christy voiced the following concerns:

“I could not believe what I was reading. A doctor in St. Anthony had offered Medical Aid in Dying (MAiD) to the mother of a woman with spina bifida, cerebral palsy and chronic seizure disorder. Just finishing up the night before, we were talking about ways the federal government can work towards making our country more inclusive, breaking down barriers and fighting attitudinal discrimination and stigmas against persons with disabilities and the next day, I read about an overt discriminatory situation happening right now in our province.  

Here’s why this situation is a human rights issue. In Canada, we now have legislation that allows for individuals to request Medical Aid in Dying. There are important and clearly essential safeguards in place that ensure an individual’s rights are upheld and that coercion is not factored into an individual’s decision to make that choice. Now, it should be clear that I have deliberately used a very specific word in my last sentence – CHOICE. The legislation clearly states that this is about the individual’s choice to have this option considered. It is, however, not a doctor’s place to offer this as an option. Because that is where lies the grey area of coercion. In fact, in order for someone to be eligible for MAiD, it clearly states an individual “make a voluntary request for medical assistance in dying that is not the result of outside pressure or influence.”  Medical professionals are in a position of power and their biases can influence someone’s choice, especially when they make their own discriminatory decisions about someone’s value and worth—a fate far too often felt by people with disabilities.  

Another eligibility criteria on the list is to have a “grievous and irremediable medical condition.” This eligibility component is one the disability community advocates are more worried about. Because, of course, under this section it says the patient must “have a serious illness, disease or disability.” And in the case of Candice Lewis of St. Anthony, she does have a series of complex disabilities, one’s she has had her whole life – for 25 years. However, it is simply not just about having a disability that makes you eligible for MAiD. You are required to meet all four requirements under the “grievous and irremediable medical condition.”  You must also “be in an advanced state of decline that cannot be reversed, experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable,” and “be at a point where your natural death has become reasonably foreseeable.”  

The new Medical Aid in Dying Act was assented by the federal government June 17, 2016. Yet, we have heard little from the Government of Newfoundland and Labrador on how they intend to ensure the lives of persons with disabilities are respected and protected under this law. No parent wants to hear that their child is a “burden” or that they are “being selfish” for loving them, taking care of them and making sure their needs are met the best they can. What they want to hear is that the health authorities in this province are here to help and provide the best care possible for their loved one and work together to make that happen.”  

When my son, Brennen was born, I remember feeling completely lost and entirely unprepared for what we were thrown into. I was terrified of what our future might hold and was afraid to even think too far ahead. I worried about his quality of life. I worried about the struggles he would have and the challenges he would face. Would he ever walk or talk? Would he reach certain milestones?

I know now that quality of life is not measured by milestones or accomplishments. It is not for others to judge by what one can or cannot do. If quality of life is based instead on the love and joy that surrounds us, and the experiences and relationships that are nurtured, then Brennen has a quality of life greater than anyone I know.

I am sure that Candice Lewis's mom would say the same about her daughter, and my heart breaks for what they have had to go through. Like all parents, what we want most in this life is for our children to grow up feeling safe and loved, and for them to become valued members of welcoming communities. While my son's physical limitations are extreme and his level of cognitive understanding is unknown, his inner light is phenomenally bright. I am grateful for every day that I get to be his mom, and no doctor has the right to suggest otherwise.

TD Summer Reading Club

At the end of this past school year, Brennen received an exciting card in the mail - it was an invitation to the TD Summer Reading Club. The invitation was printed in English and braille, and stated that it was "For kids of ALL abilities", so we headed off to the A.C. Hunter Children's Library, renewed our library card, and eagerly signed him up! The TD Summer Reading Club is Canada's biggest bilingual summer reading program for kids of all ages, all interests, and all abilities. It is a free program that is offered at 2,000 public libraries across Canada. It celebrates Canadian authors, illustrators and stories, and inspires kids to explore the fun of reading in their own way. There is something for everyone, including children with print disabilities as well as preschoolers and their families. (You can learn more about print disabilities HERE.)

We were excited to receive an accessible notebook, which contains a place for your child to state their summer reading goals, a list of top recommended reads for the summer, a space to collect stickers from the library each time we visit, and a list of challenges for school age readers and pre-readers - really fun things like "Make up a story about you and your favourite toy" and "Say hello to every animal you see"! Our notebook also included an audio book on CD that we can listen to at home, and a program certificate that can be personalized once we complete our reading goals.

Children's books are one of my greatest loves. I have always been an avid reader, and I love to get lost in the quiet of a good novel, but there are some children's books that I read as much for me as I do for my little ones. There's just something so powerful about having a life's message condensed into just a few words in a way that a child can understand. It gets me right in the heart. At our most recent visit to the library, I spent some time looking around - meandering through the aisles of hard-bound treasures, while Andrew settled into a cozy chair reading stories to our youngest. I came back with tears in my eyes, and he said, "What's wrong with you?!" I said, "I read THIS book.."

We are big readers and book collectors in our house. Our little ones love to look at the pictures and listen to the sounds of the words on each page. Reading books aloud to children stimulates their imagination and expands their understanding of the world. It introduces concepts such as numbers, letters, colors, and shapes in a fun way, and it builds listening, memory, and vocabulary skills while preparing them to understand the written word. You should definitely, absolutely, without any question read aloud to your children. Reading together at home creates a special time for you to bond with your child, while at the same time helping to develop their lifelong appreciation for reading.

Diversity in children's books is a big issue for us, as I believe that every child has the right to see themselves reflected back from the pages of picture books. Here are some of my favourite books that celebrate difference and uniqueness and feature children with a range of abilities:

We Go In A Circle by Peggy Perry Anderson - A story about therapeutic horseback riding that reminds me of our time with Rainbow Riders.
Just Because by Rebecca Elliott - A young boy describes all the fun he has with his big sister, who has special needs.
What's Wrong with Timmy? by Maria Shriver - Answers to questions that children might ask about a child who looks or acts different.
Don't Call Me Special by Pat Thomas - Talks about equipment that children with physical disabilities might use to help them live happy lives.
Different is Awesome by Ryan Haack - Shows how some people do things differently, but that's ok!

Do you guys have any favourite books that help children learn to celebrate being themselves? I'd love to hear about them!

Raising a child with a disability, I have come to realize that we live in a world where accessibility is generally an afterthought, but I am happy to see that our local public libraries are super accessible and super accommodating, and the staff are eager to help. They have put a lot of time and thought into considering people who experience reading in different ways.

Our libraries also offer activities and events that children of all abilities can participate in. The website states, "If your child has special needs that affect their ability to participate in programs at the library, mention this to staff so that programs can be adapted. Any specific suggestions you can offer may be helpful."

Talk to your local public library staff this summer to find out how your family can join the TD Summer Reading Club!