Saturday, November 18, 2017

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"

Wednesday, November 15, 2017

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!

Sunday, November 5, 2017

F-Words Survey

You guys! Exciting things are happening!

I have written several times now about my involvement with the 'F-Words' research with CanChild Centre for Childhood Disability Research. (See HERE and HERE).

Our goal has been to address the knowledge needs of families with children with disabilities and to support the uptake of the F-words concepts in children's health care.

The 'F-words' we're talking about are Function, Family, Fitness, Fun, Friends, and Future.

There has been a very positive response to the F-words concepts, and it is exciting to see that they are being incorporated into therapy planning by both clinicians and families all over the world.
We have recently created a Knowledge Hub, where people can go to learn about and share ideas for moving the F-words into practice.

There are six main sections in the Knowledge Hub: 1) The F-words Homepage; 2) ICF Resources; 3) F-words Footprint; 4) Family & Clinician Voices; 5) F-words Tools; and 6) F-words Research Team.

In order to ensure that the Knowledge Hub is meeting the needs of stakeholders, we are conducting a pilot evaluation. After exploring the Knowledge Hub, we hope you will share your feedback with us by completing a brief and anonymous survey.

You can access the survey HERE.

A new video was also created to bring awareness to the 'F-words'. That video has been entered into the CIHR Institute of Human Development, Child and Youth Health (IHDCYH) Video Talks Competition, and is now in the running to access funding for our research. We just need to get a few more 'likes'.

I encourage you all to click here to watch the video and give it a thumbs up! 

On behalf of the 'F-words' in Childhood Disability Research Team, we greatly appreciate your time and support! Thank you!!

-Julie B

Wednesday, November 1, 2017

Halloween Recap

I'm a day late but I wanted to wish you all a Happy Halloween!

We have been enjoying the festivities - visiting the farm and the pumpkin patch, and doing our best to keep up with all that is going on this time of year. It's been a busy couple of weeks for us (not that we are ever not busy), but it seems like there are certain times when everything happens all at once.. and this is one of those times.

We didn't go all out for Halloween this year, as far as decorations and things. We are selling our house, and it didn't seem like spider webs and tombstones would add a lot of curb appeal. I may be wrong, but I didn't want to take any chances. And it looks like I made the right call, because our house is SOLD!  It's great, and we are happy about it, but with a weird sort of jumble of feelings as well. Andrew and I really love this house, and we have spent some of our best years here, but as I've said before, we need more space and it is time to move on. We are here until the end of November, and then will be staying with my parents until our hew home is ready (Thanks Mom and Dad!!).

It is a relief to have this part of the process over with. I have to say, it was quite challenging having to pack up three children and all of their equipment every time there was a scheduled viewing. It would take me a full day to get the house ready each time, cleaning and tidying, hiding medical equipment and filling the cars with mobility devices - wheelchairs, walkers, standing frames, you name it. On top of trying to fit in all of the daily appointments and therapies and home programs for each child, it was just too much. Honestly, I just didn't have time to deal with the house stuff, so I'm glad that part is over with!

Even though we didn't go overboard with the decorations, we did go for it with the costumes!

Considering all that Brennen has been through, and how well he recovered from his spinal surgery earlier this year, we thought this costume was appropriate! What a Champ!! We also had a Super Girl, and a tiny parrot who rocked their costumes and stole all of the attention at the parties we attended.

We went to the Halloween party at Easter Seals on Sunday, which is always such a great time! I just love seeing the little ones all dressed up, and to see how they've grown from year to year. Brennen is one of the 'older kids' now, which I still find so hard to get my head around. He was always one of the youngest in his group, but he is a big boy now! Many of the older kids have moved on and outgrown the Halloween parties, and maybe Brennen only has another year or two, but for now he is still interested and still loves to be a part of the celebrations (and my Mamma heart is going to milk it for all it's worth!)

We trick-or-treated at the Janeway yesterday. Every year the staff and volunteers go over the top with the decorations, treats and costumes, creating a positive, fun environment for patients and their families. Having to spend occasions like this one in the hospital is no fun for anyone, but the Child Life Department at the Janeway ensures that the children get to experience the joy of each holiday while being away from home. Every kid deserves to have fun on Halloween, and it was wonderful to see smiles on the faces of children who are battling some pretty serious illnesses and conditions.

I have to add here that I don't have all happy memories of Halloween at the Janeway. Brennen's First Assessment Clinic day actually fell on Halloween (twelve years ago), and I spent one of the hardest days of my life in an examination room with doctors and therapists who were dressed as pirates - complete with tea leaves on their faces and hooks for hands, telling me for the first time that my child has cerebral palsy. It was bizarre, and uncomfortable, and not entirely appropriate. I have since learned that they no longer hold First Assessment Clinic on Halloween, so I am happy about that!

While trick-or-treating through the hospital yesterday, Andrew and I decided to visit the NICU with our littlest baby boy. He spent several weeks there after he was born, before he was able to come home with us, and we haven't been back there since. The nurses and neonatologist were so excited to see him again! It was an emotional moment for me to see how much love they have for our boy, and how proud they are of how far he has come. I cannot say enough about the incredible staff in our Neonatal Intensive Care Unit. They provide such high quality care to these precious little babies who fight so hard to be there. I was so happy to be able to go back and show them just how well our boy is doing! It was also a sentimental journey for me, thinking back to how this baby came into our lives. Those early days spent visiting him in the NICU changed me forever, and my memories of that time are the ones I go back to when things are rough and when life feels overwhelming. This was not ever how I imagined that our family would grow, but am I ever glad that we opened our hearts to the possibility of providing a loving home to children who need us the most. We have been through a lot, but adversity has shaped me and made me strong. It’s given me the family and life I have today, and I wouldn't trade this path for any other.

I hope you all had a Happy Halloween!!

-Julie xo

Thursday, October 12, 2017

Canadian Blind Hockey

When Brennen was very young, and I was still coming to terms with his diagnosis, I had no idea the impact it would have on all of our lives. I knew nothing about raising a child with a disability, nothing about navigating the world with a child with special needs.

With his diagnosis, the dream I had for my child and for my family was shattered. I had to reorganize my expectations, and it wasn't easy. Believe me. Letting go of years worth of day dreams doesn't happen overnight. It was a gradual process of acceptance to get to where we are today, and I can look back now and see how I struggled with so many pieces of our life at that time.

Little things, like when it came time to purchase a new vehicle - I was adamant that I didn't want to drive a minivan because I was not a "Soccer Mom". I wasn't going to be lugging around sports equipment and dropping my kid off to practice on Saturday mornings like other moms. At a time when I was faced with so many uncertainties, one thing I thought I knew for sure was that I wasn't going to be one of the moms cheering their child on from the bleachers. And I was mad. When life throws you a curve ball, it is easy to focus on what you don't have, and I know I did this for quite some time. 

This stubborn frustration carried over into other aspects of our daily life, whether I wanted it to or not. I remember picking out sheets for Brennen's first 'big boy bed', and steering clear of anything with balls or pucks or other sports paraphernalia. I was so sure my boy would never be able to use those things, and I didn't need the cruel reminder staring me in the face every night. It was all hard enough, dealing with a new diagnosis, and getting my head around what life was going to be like for my child. I certainly did not need footballs on his sheets to make my life even worse than it had become.

It's funny, the way our minds work. I had myself convinced that so many of life's opportunities would not be available to Brennen. But I was wrong!

This week, my child played hockey!

Canadian Blind Hockey (previously known as Courage Canada) is a national registered charity that leads the development of the sport of Blind Hockey and provides children and youth with the opportunity to learn to skate and try Blind Hockey.

Blind Hockey is one of the fastest growing Parasports in Canada. It is played with the same rules as traditional ice hockey, with only minor modifications to make the game more accessible, and is played by athletes who have a vision impairment ranging from legally blind (approximately 10% vision or less) to totally blind. The major modification is the puck. Made out of thin steel, it is hollow and filled with ball bearings to make noise, it is larger than a traditional puck measuring 5 ½ inch in diameter (nearly double the usual 3 inch diameter), and moves more slowly across the ice.

In partnership with the CNIB and AMI - Accessible Media Inc, Canadian Blind Hockey runs youth blind hockey programs, summer camps and tournaments from coast to coast, and this week, they were here in Newfoundland offering a learn to skate field trip at the Paradise Double Ice Complex.

It was so wonderful to see the children enjoying their time at the arena. For many, it was their first time on the ice, and you could see their faces light up as they swished and swerved around the rink, free as the wind and loving every minute.

Brennen has taught me many things over the past twelve years, and has opened my eyes to the world of opportunities that exist for individuals with disabilities. Schools provide educational and social opportunities, but there are many incredible organizations that provide extra-curricular and leisure activities for kids with different abilities.

There is no limit to what individuals with disabilities can accomplish and achieve, especially when they have access to programs that support their learning and development. Brennen may not go to university. May not drive a car. May never live on his own. But what matters most is that he is happy, that he lives a fulfilling life, and that he always feels loved and included. Our expectations have changed, but we have vowed as a family to give him all of the opportunities we can to learn, grow, and flourish.

It is easy to get lost in the stresses of life and to focus on the hard parts instead of the good. Motherhood is so much different than I ever expected it to be, but woven throughout the chaos are lessons about the world and life and who we are in the context of a much bigger picture. It is nothing like I had planned, but I am open to these lessons that life is intent on teaching me.

Thank you to Canadian Blind Hockey, the CNIB, and AMI, for providing access to sports for youth who might not otherwise be able to participate. We had an awesome day!

Thursday, September 28, 2017

Little Rumble

Yesterday, we said goodbye to our Little Rumble.

Rumble was a retired race dog, who we adopted seven years ago through the Newfoundland chapter of Greyhound Pets of Atlantic Canada (GPAC-NL). He spent the first three years of his life on the track, before retiring and finding his forever home with us.

Rumble has been such a big part of our family, and he has been a wonderful companion to Brennen. He was always so gentle and careful with him, and would walk along with his wheelchair, never pulling ahead or veering off to the side. Rumble was not just a good dog. He was the best dog, and we loved him very much.

Rumble has been on a steady decline these past couple of months. It started with him just acting a bit funny - staring off at nothing, pacing around the house at night, a lack of appetite, losing clumps of fur, and it seemed to go downhill from there fairly quickly. We brought him to the vet for a check about a month ago. They did some blood work, which didn't show anything obviously wrong, and we were referred to the Veterinary Specialty Centre, where they performed an ultrasound just last week. The results were inconclusive, meaning that, again, there was nothing obviously wrong.. but there was obviously something wrong. By this point, he had stopped eating altogether, and had lost a ton of weight. Andrew and I have been up with him all night, every night this week, and he was not doing well. We could not allow him to suffer any longer, and so we consulted the vet and determined it was time to say our goodbyes.

We are heartbroken, and feeling a tremendous sense of loss right now. Rumble was our boy. Our big baby.

Rumble loved to run, and we loved to watch him! He was in his element when let to run free. In his earlier years, he could fly like the wind, doing loops around us but always coming back to stop at our feet. He was built for speed - a canine athlete who could hit 45 mph in a double suspension gallop. Greyhounds are the second fastest animal on Earth, just behind the cheetah, and Rumble loved to show us what he was made of!

We are still a little in shock, not really believing that he is not coming home. There is an emptiness in the house, although it is full of activity. We miss our sweet Rumble. Our family is not the same without him, but we are better for having had him in our lives. He was the perfect dog for us - loyal and loving and super laid-back. He was a gentle giant who craved attention and would sit up on your lap if you let him. Rumble had no concept of how big he was, and would try to squeeze into the smallest spots just to be close to you.

I will miss his wet nose nudging my elbow. I will miss the sound of his heavy paws on the hardwood floor. I can imagine that for many years to come, we will be saying things like, "Remember when Rumble ate a whole cheese log off the coffee table?!" and "Remember that time Rumble got away from Mom and Dad's house?!" - To follow up on that, we were all out by the lake, and he wandered off. It was no time before I received a text saying, "Julie, is Rumble missing?" I'd hardly had time to realize that he was missing! Someone nearby saw a Greyhound walking casually down the road (by himself), and knew that wasn't right. They picked him up and called our friends at GPAC-NL. One of the members recognized him, and knew to contact me. Unreal. It was seamless - like the whole thing had been planned. My love goes out to our GPAC friends and family. We are so thankful for your support all these years. You guys do great work, and I am so proud to have rescued our sweet boy through such a compassionate organization.

Rumble had a wonderful life, and he certainly enhanced ours. We will miss him forever, and remember him often.

A dog doesn't care if you are rich or poor, educated or illiterate, clever or dull. Give him your heart and he will give you his.” 

Sunday, September 17, 2017

House For Sale

You guys, I can't believe I am writing this post, but here goes..

We are selling our beautiful home!

Andrew and I designed and custom built this house just five years ago, and it was the perfect home for the three of us. We have made so many wonderful memories here. We have worked here, and played here, and hosted friends and family here. While we built this home to be accessible and functional for Brennen's needs, ultimately we wanted our home to be a place where everyone felt safe and loved and where we could spend our days creating beautiful, exhausting, and real life moments that we would treasure for a lifetime - and we have certainly accomplished that.

Shortly after we moved in, our house was featured on (see HERE).

We are still so in love with this house, but the reality for us right now is that we need more space.

We had not ever planned on expanding our family to include two more children (and all of the 'stuff' that comes with them!), but as we well know, life doesn't always go as planned! Opening our home (and our hearts) to our foster babies has changed our lives in the best way possible. We have a busy house, full of so much love and every day is a new adventure. We are loving our life and we wouldn't change a thing, but we need another bedroom, and could really just use some extra space!

Andrew and I want our children to feel a strong sense of 'home', of belonging to this family and being loved by us. We have already begun building our 'Ultimate Dream Home version 2.0' and we are super excited about that! I will try to bring you along for the ride as we work on our new home, but there is so much to do and my brain is still catching up to all that is happening.

It is a bitter-sweet feeling, because we really do love our home here.

We love the open concept. It was important for me to be able to see Brennen at all times from wherever I was, but it has proven to be super functional and practical for many other reasons. The truth is that an accessible or universally-designed home will accommodate everyone and has many conveniences that we hadn't even thought of.

From Universal Design NL:
"Everyone will benefit greatly from a home with universal design features, as it makes life more comfortable and enables ease of access and movement throughout everyday tasks. A home that is constructed with universal design will also be a safer and more welcoming home, easily accommodating your family members and visitors of all ages and abilities. As you grow and age, your housing needs will also change. Planning for these changing needs and abilities helps you better customize your home’s features and can also reduce the need for costly future renovations.
Homebuyers who invest in a universally-designed home will benefit from an open, modern design that will be immensely useful to them in all stages of their lives – from parenthood when frequent in-and-out stroller use and active kids are in play, right through to retirement when mobility issues may become a reality. Consider how everyday scenarios will be much easier with universal design – you’ll have a safer home with the added convenience of layouts that allow easy clearance and access for movers, service personnel and equipment if ever you should need them. Finally, universal design can also make your property more valuable and appealing when re-selling."

The hallways are wide (4 feet), and all doors are 36". The garage is built up to be level with the floor, creating a "no step", level entry into the home. There is a ramp from the driveway to the backyard, which leads to an above ground, walk-out basement and beautifully landscaped yard.

We had a bathroom connect to Brennen's bedroom with a pocket door, and the bathtub was raised to make bathing him so much easier. This tub has certainly saved my back on many occasions!

The playroom gets tons of natural light and has provided countless hours of fun for our little ones. We are so proud of this space, and will certainly miss it when we go.

And this room (the nursery) has to be my favourite. I just love the feeling I get when I'm in this room, knowing that we are providing a safe and loving home to these precious little ones. I get emotional just thinking about it. It's the personal details and the love that goes into making each room as cozy as can be, that really creates the feeling of "home" and brings us so much joy.

I can't even believe that we are selling this house, but it has served us well and now it is time to move on. This little family of mine is everything, and home is wherever we are together!

Want to buy my house?! You can see the MLS listing HERE.

If you are interested in a private viewing, contact Erica at 709-330-0575.

Friday, September 15, 2017

A Quick Trip to Montréal

This week, the 71st Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) is taking place at the Palais des congrès de Montréal in Montréal, Quebec. The purpose of this conference is to bring clinicians, allied health professionals and researchers from around the world to present on innovations that are improving the lives of individuals with cerebral palsy and other childhood onset disabilities.

While I wasn't able to attend the full conference, (I just could not fathom leaving Andrew with three children, countless appointments, and a million other responsibilities for a full week), I did make a quick trip to Montréal to attend a couple of the meetings and seminars that I was specifically invited to.

I spent some time at McGill University, meeting with Dr. Keiko Shikako-Thomas, Canada Research Chair and Assistant Professor at the School of Physical and Occupational Therapy of McGill. Keiko is head of the Jooay team, which has created an app that aims to connect children and youth to leisure activities. I was invited to a brainstorming event on the best ways to promote leisure participation of children with disabilities and to engage families in the community. I will have lots more to say about this in another post!

McGill is such a vibrant campus, full of history, with its beautiful old Victorian mansions interspersed among modern architecture. Chartered in 1821, McGill is among the oldest and most distinguished of North American Universities, and is among the most prestigious universities in the world. McGill is a world leader is research excellence and has four affiliated teaching hospitals, and with 40,000 students from 150 countries, it has the most international student body in Canada.

The University campus is located in downtown Montréal, at the foot of Mount Royal, Montréal's grand mountain park. I took some time in between meetings to climb the 400 stairs to the top of the mountain. I was completely overdressed for the 26 degree heat, and not wearing appropriate footwear for such a climb, but the views were spectacular, and it was totally worth it!

I also had the opportunity to meet with Dr. Peter Rosenbaum, whom I have been working with on the F-Words in Childhood Disability. Dr. Rosenbaum is a Professor of Paediatrics at McMaster University, Canada Research Chair in Childhood Disability, and Co-Founder of the CanChild Centre for Childhood Disability Research. 

It was great to chat with Peter about the F-Words research project, the work that has been done so far, and where we hope to take it from here. Peter is a wealth of knowledge when it comes to childhood disability, and he was very interested to know about Brennen and how he's been doing since his spinal surgery. Peter will be presenting on the F-Words in Childhood Disability in Montréal on Saturday at the Community Forum. If you are in the area, you should check it out! 

Also, it was just announced that Peter will be the recipient of the 2017 Award for Individual Leadership from the Canadian Association of Paediatric Health Centres!

"Formerly known as the CAPHC Contribution to Child Health Award, the CAPHC Award for Individual Leadership annual award was created to recognize outstanding leadership by an individual who has dedicated their career to making a difference in the health and well-being of children, youth and families in Canada. The award specifically recognizes creativity and initiative to promote positive change and long-term improvement."

Well deserved! Congratulations, Dr. Rosenbaum!!!

I spent some 'free time' exploring the city. I enjoyed walking around Old Montréal, and the Old Port, and I discovered some wonderful art galleries. I ate ALL the smoked meat poutine, did some window shopping, and really made the most of my short time in the city.

I had a wonderful time in Montréal, but even after a few short days, I was anxious to get home to my family. I have said it before, and I will say it every time - the best part of being away is always, always coming home.

-Julie xo