Wednesday, February 24, 2016

Inclusive Communities Summit

The Independent Living Resource Centre (ILRC) is hosting an Inclusive Communities Summit: "Sharing Experiences and Exploring Opportunities" on April 13-15, 2016 at the Holiday Inn in St. John's, NL. This event will focus on a variety of topics as they relate to persons with disabilities and inclusion. Themes include Building Inclusive Neighbourhoods, Employment Opportunities and Challenges, and The Built Environment. This summit will be beneficial to everyone including individuals, employers, business owners, community organizations, educators, builders, health professionals, municipalities, and government officials. 

The goal of the inclusion summit is to bring together key stakeholders from within the community to talk about inclusion and to help move Newfoundland and Labrador forward in becoming a fully inclusive province for persons with disabilities.

I was on the planning committee for this event, and am so excited about the final program. We have an incredible group of speakers and presenters with a wide range of areas of expertise. When we first talked about having a conference on accessibility, we wanted to be sure we weren't just stating the obvious. Sure, ramps and blue spaces are essential, but we wanted to consider the scope of the word - "accessibility". Comprehensive accessibility is actually a whole lot more complicated than removing barriers or making the appropriate modifications. We want to talk about how we can create a province and environment where everyone feels included, safe, and connected. We want to create a community of people who all have the capability to lead active and productive lives. The fact is that we all experience the world differently from each other in one way or another, so let's see what we can do to make things as comfortable and 'accessible' as we possibly can!

There will be presentations and discussions on best practices and innovated approaches of inclusion as it relates to a variety of topics including employment, technology, education, recreation, legislation and universal design.

Our Summit Keynote Speaker is Laurie Beachell. Mr. Beachell recently retired as National Coordinator of the Council of Canadians with Disabilities (CCD). He has over 30 years of experience working to create more accessible and inclusive communities, and has been involved in advocacy, research, education and litigation to advance the equality of persons with disabilities. In 2004, Mr. Beachell was appointed by the Minister of Finance to the Technical Advisory Committee on Tax Fairness for Persons with Disabilities. In 2006 he was appointed to an Expert Panel by the Minister of Finance to recommend new federal tax measures that would address financial security needs of children with severe disabilities. The resulting report “A New Beginning” recommended the creation of the Registered Disability Savings Plan.

Our Lead Panelists include:

Mike Bradley - Mayor of Sarnia, Ont., who has made significant impacts in promoting the inclusion of persons with disabilities within his city. In 2015, at the Sarnia-Lambton Community Summit on Accessibility, Mayor Bradley was recognized by the province of Ontario for his tireless efforts in advocating on behalf of persons with disabilities and contributing to make Ontario an accessible place to live, work and play.

Dr. Cathy Chovaz - a Psychology Professor from Kings University College at Western University, Ontario. She teaches courses in clinical psychology, with her areas of expertise being mental health and deafness. Dr. Chovaz has published many journal articles, and co-authored the book “Mental Health and Deafness”, and she is Canada’s first Deaf clinical psychologist.

Ron Wickman - an architect from Edmonton who is best known for his experience and expertise in accessibility and barrier-free design. He is committed to providing affordable and accessible housing, and has received national recognition for his practical and functional designs.

Our Panel Speakers include a number of local professionals in various fields, such as architecture and construction, education, occupational therapy, sociology, and community planning, as well as the Deputy Minister of Seniors, Wellness and Social Development.

Allen Mankewich from the Canadian Centre on Disability Studies will present results from the CCDS VisitAbility Project. The Visitability Project is a three-year national initiative with the overall goal of promoting VisitAble housing for all Canadians, including persons with disabilities and seniors.

I am particularly excited to hear from John Rae, who is a powerful advocate for Canadians with disabilities. Mr. Rae is currently 2nd Vice Chair of the Council of Canadians With Disabilities National Council, and Chair of its Social Policy Committee. During the past 40 years, John has been a board member of many human and disability rights organizations. He has devoted his life to representing blind and disabled Canadians as a speaker, writer and, most predominantly, as an advocate for the rights and abilities of people like himself.

The Summit will open with the Stella's Circle Inclusion Choir, and there will be interactive parasport demonstrations, including boccia ball and wheelchair curling. The Inclusive Communities Summit is an opportunity to connect with a diverse group of people who are working on the front lines of disability advocacy. It is an opportunity to engage with others who have a vested interest in disability rights and inclusion, and to learn from those who are experienced in their field.

"Sharing Experiences and Exploring Opportunities" - We all share responsibility for creating inclusive, accessible communities. We must work together to find solutions that remove barriers, provide services with dignity, fairness and respect, and advance our goal of an inclusive society.

Go to the Inclusive Communities Summit website for a complete list of speakers and program details. 
Click HERE to order your tickets today!

Sunday, February 21, 2016

A Princess Tea Party with Heroes

"Sometimes, real superheroes live in the hearts of small children fighting big battles."

This weekend, The Children's Wish Foundation hosted a Princess Tea Party.. with Heroes! Children were invited to dress up as a princess or superhero and join in a wonderful afternoon at an enchanted castle with some of their favorite Disney Princesses and Comic Superheroes.

It was truly a grand affair for both boys and girls. There were fun structured activities for the kids, free massages for parents, an awesome stage show, and lots of surprises! 

The Tea Room was decorated in a beautiful fairy princess style that every little girl dreams of. The event organizers concentrated on every detail to make the afternoon perfect for the children and parents in attendance, as well as for the special little "Wish Princesses" and "Wish Superheroes", whose most heartfelt wish will be funded by the event. 

All children love to dress up and play make-believe. A witch, a pirate, a police officer or a race car driver - children's imaginations can transform them into whatever they want to be. For many of the children at this magical event, dressing up as a princess or superhero was an escape from their everyday lives, which can be full of medical appointments and hospital visits. Pretending to be a comic book character is a fun way to escape the real world for the afternoon, and let their fantasies and imaginations take flight!

When we think of superheroes, we think of people who are stronger than normal, and that's really what these children are. They are fighters. They are extraordinary kids who are living with an illness or disability, and if you think of what some of these children have overcome and survived, they must have superhero powers. These children represent hope and courage, strength and determination.

Wish Princess Eva is 5 years old and has stage 4 neuroblastoma. 
She went on a Disney Cruise for her Wish in November of last year!

We decorated cookies and enjoyed a lovely tea party, with tea provided by Steeped Tea.
Steeped Tea is not just any kind of tea! They are all naturally flavoured and free of GMOs, chemicals, and artificial flavours. The fruit teas (made with real ingredients, no added sugar and caffeine free) are great for everyone, including kids! 

It was a magical occasion that was visually stunning, whimsical and memorable for all who attended. It was wonderful to spend the day with little Princesses and Superheroes, who's biggest and best super powers might just be the way they inspire and motivate others. A dear friend said to me yesterday, "Love the awesome costume, Brennen! I say costume, but it's more of a uniform. Dude's a superhero everyday!" I couldn't agree more. Brennen is my hero. These children are all heroes. 

As Batman once said, "You only have your thoughts and dreams ahead of you. You are someone. You mean something."

All proceeds from this event will go towards granting a wish for a child with a life threatening illness or disability in Newfoundland and Labrador.

Princess characters were provided by Dream Princess Parties Newfoundland.

Thanks to Alick Tsui for these beautiful photos!

Friday, February 12, 2016

Tulip Tales: Eli

My friend Leah and I go way back. We were friends long before we had children, long before life got crazy and serious and we had any sort of real responsibilities. Leah and I actually met in Bangkok, Thailand in 2002, through a mutual friend (hey, Lesley!). We spent a lot of time together, exploring the country, visiting the beaches and the Hill Tribes, and absorbing as much of the Thai culture as we possibly could. It was a bonding experience, and I knew we would remain lifelong friends.

Our paths eventually went in different directions. We lived in different cities and sort of fell out of touch for a little while, until December of 2014, when I received this beautiful message from Leah:

"Hey Julie, I just want to reach out and say "thank you". I've been following you on Facebook and reading all your posts for a while now. I found the stories of the many children and their families both heartbreaking at times, and always inspiring. I know that these helped me when Eli, my 7 month old, was diagnosed a couple of months back with Cri Du Chat, a rare genetic disorder that will affect his physical and mental development. At first, we were devastated and overwhelmed and I really want you to know that in those moments, I thought of the families I had previously read about on your blog and knew that, while there would be difficulties, there would also be love and happiness. We stay focused on Eli's abilities and the joy he brings to our lives. He is truly a light in our lives. Thanks again for everything that you do, for being an example of an amazing and dedicated mother and for the stories that helped get me through the darkest moments of this life adventure. Much love and light to you and your family. xo Leah"

Honestly, it is messages like this one that remind me every day that we are so, so blessed. Sharing our journey has helped me immensely, and being able to share the stories of other families raising children with disabilities is an absolute gift. If I am able to reach one parent, one mother or father who might be having a difficult time with a new diagnosis, if I can help them through their grief and sadness to find the light in their situation, then I am doing something right. 

I am so happy to have connected with Leah again, and I am thrilled to open up this space to her today, to share the story of her sweet boy, Eli!

Diagnosis Day

It was a regular doctors visit. After my mother saying that she would love to know how much he weighed more times than I could count, I made an appointment for my 4 month old son, Eli, to see a doctor for a regular check up while I was visiting home. We had returned home when Eli was 4 weeks old and were intending to stay for about 9 months, the length of my husband's parental leave from work. It was August and we were just coming out of the hottest month I can remember for St. John's. The visit to the doctor was normal. Eli was gaining weight, so the minor issues with feeding (sputtering every now and then while breastfeeding) weren't an issue in my mind. His head was smaller but nothing alarming. Again, not an issue for my doctor. When I mentioned to her that Eli had a really high pitched cry (we used to call him "The Banshee" and even wore earplugs sometimes while he cried as we changed his diaper! It was intense!), she said that she would refer us to an ENT to see if there was anything going on with his vocal cords. I remember leaving the office relieved. There had been a few things we had noticed and only talked about in passing to one another but put down to nothing more than "different kids develop differently". I talked to Chris about the referral and we went about our day. When we got home, the kids and Chris went for a nap and I got a snack and sat down to the computer to, of course, Google "high pitched cry". I wasn't expecting anything serious but the search results stopped me in my tracks and gave me a horrible sinking feeling. Cri du chat, Cri du chat, cri du chat. A rare genetic disorder that affects the short arm of 5th chromosome, manifesting in a characteristic high pitched cat-like cry, small head, small chin, trouble swallowing, epicanthal folds in the eyes, developmental delays, heart defects, and, in 10% of cases, death.

The words spilled into me and, even though I was in disbelief, they rang true so many times. What seemed like forever later, Chris got up from his nap and I shared with him what I had read. We both felt sure this was what Eli had but the clincher for us was looking at his little palm to see the single palmar crease -the single line that runs across the hands of those with syndromes like Down Syndrome and Cri du Chat. It was then that we both knew in our hearts that we were dealing with something we had not expected.

The following weeks were filled with tears, talking about all of our fears, reading what little information was available about Cri du Chat, and attempting to navigate our way through our lives with this mind blowing diagnosis. We were able to get into see a pediatrician within a couple of weeks and quickly after that, a geneticist. When the results from the blood work came back positive for Cri du Chat, we were already moving into a place of acceptance and just wanted to get the ball rolling on therapies, knowing that physio, speech pathology and occupational therapy helped kids with CdC realize their full potential. We were on board and all in, committed to giving Eli what he needed to thrive. We decided to move our lives back to Newfoundland from Vancouver to have family support and Chris quickly started the process that ultimately ended with his work moving us home on compassionate grounds.

Eli is now 20 months old and writing about that day I found out about CdC still gives me a pit in my stomach. We have come so far and Eli has been the one to help us get there. He is a funny, determined, stubborn, sweet little boy who loves his sister, his puppy, his food and is quick with a smile. The diagnosis took over our lives in the first few weeks of finding out but Eli showed us quickly that he isn't his diagnosis. He is a little boy like any other who just happens to have an extremely rare genetic condition.


Leah has started a new site - True Heart Tribe - where she hopes to raise awareness of Cri du Chat, and connect with other families who are experiencing any kind of rare diagnosis. 

She writes, "I am excited to continue to share our learnings on this path we have found ourselves on. I am meeting amazing individuals and my world view is certainly opening up and changing for the better. My goal is to shed light on the amazing qualities all people with exceptionalities have. There is no room for sympathy, sorrow or fear. Instead, this is a life of strength, happiness and determination. Join us in this journey and understand that we are all shining stars who shine the brightest when we support and respect one another, no matter what condition or situation we may find ourselves in."

Thank you, Leah for your openness and honesty in sharing your personal story. Like I said when I replied to your very touching message, "You will be surprised at how Eli changes your life. I can promise you that you will know more love and joy than you ever have before. I am actually excited for you! Sounds strange, hey?! All I can tell you is that you are going to be ok. You are going to get through this and you are going to have an awesome life! Brennen has been such a gift to me and my family, and I’m sure that Eli will be that for you. He will teach you more than you can imagine, and you will be stronger and better for it. Just love him. That’s all you have to do. The rest will happen, and you will be surprised at how capable you are to handle whatever comes your way."

You've got this, girlfriend!
-Julie xo

Tuesday, February 9, 2016

A Weighted Blanket

Weighted blankets are becoming increasingly popular in the special needs community, and we recently decided to try one!

Brennen doesn't have trouble sleeping - in fact he loves his sleep, but he also loves to be snuggled up in a blanket, and he enjoys the feeling of something heavy on his legs. Weighted blankets create a natural calming effect on the body. Deep pressure stimulation causes the brain to release neurotransmitters like serotonin and dopamine that improve moods and induce a calming effect. Like a big hug, weighted blankets can make a child feel secure, grounded and safe.

When we were young, my sister and I would often sleep over at our grandparents' house. Our Nan always had a heavy quilt on the bottom of the bed, and I distinctly remember that feeling of being tucked in so tightly you just didn't want to move. It was like a baby being swaddled. It was soothing, calming, and we always slept great!

I ordered Brennen's weighted blanket from

Sensory Goods' company goal is to meet the needs of people affected by developmental disorders. They carry a wide variety of weighted blankets and other weighted items, exercise therapy equipment, sensory swings, oral motor tools, and more.

"Sensory Goods' Weighted Blankets are designed to calm the sensory system allowing individuals to rest their mind and body. The result is being able to properly process thoughts and feelings without becoming overwhelmed. Many families have gone months and years without a full night of sleep, or some families experience stressfully restless days from a poor night of sleep. Either way, after just one night under a Weighted Blanket you will begin to experience significant changes. You will see changes in sleeping patterns as well as attitude adjustments in the days following a night under the Weighted Blanket."

Along with the beneficial aspects of a weighted blanket, Sensory Goods has made their blankets fully customizable by allowing you to choose the weight, size, filling material, and fabric design. We chose a 10 pound, medium size blanket filled with tiny glass beads that are evenly distributed in a quilted material inside the blanket. It is so soft and cozy, and I love the red plaid fleece!

A weighted blanket can help individuals with an array of conditions, such as sensory processing disorders, neurological problems, PTSD, ADHD, cerebral palsy, sleep disorders, autism, and practically any type of anxiety. They are commonly prescribed by Occupational Therapists to help improve body awareness, to calm and improve attention and focus, and to decrease sensory-seeking behaviours.

Brennen really enjoys the weight of his blanket. He started singing when we first tried it on his legs, which is how we know he is relaxed and comfortable. I love that it is therapeutic without looking like another piece of medical equipment. There is nothing that shouts "special needs" about it. I think that this is something we will use quite often with Brennen - and I will sneak under it myself sometimes when I feel like I could use an extra hug!

Friday, February 5, 2016

For your Birthday.. A New Cast!!

We had an unexpected visit to the Emergency Room last week.

They called me from school one day, saying that Brennen was very upset and they weren't sure what was going on. Andrew went to pick him up and brought him home, and I knew as soon as I saw him that something was seriously wrong. He was screaming in pain, and was holding his legs in a very unnatural way. He wouldn't let me touch him. My first thought was his hip - either the one he had surgery on already (see HERE), or perhaps his other hip had become dislocated. Neither option was going to be good. I rushed him to Emergency, where they brought us in immediately. He was given morphine for pain, and we were sent straight up for x-rays.

It turns out, his hips are fine (that's great news!) but there is a fracture in his right foot (the talus).
How did it happen??! We have no idea.

He was much more comfortable as soon as they immobilized and braced his foot. Brennen was admitted to the hospital for a couple of days so they could monitor and control his pain, and watch for any signs of swelling or infection. Andrew and I sat by his bedside, watching him sleep. Watching the monitors. Listening to the beeps and the buzzers and the alarms going off when his oxygen levels would drop or his heart rate would increase. It is so hard to see your baby in pain and not be able to take it away from him. To feel so completely powerless is the absolute worst. My heart has been broken, crumbled from worry and exhaustion, but we will carry on. Always. And with love.

I have so much respect for all of you warrior mamas who spend countless days and nights in hospital rooms with your precious babies. I can't even imagine it. Though we have had some trying times with Brennen, and plenty of hospital visits, we have been very fortunate not to have too many lengthy admissions.

Brennen (and our whole family, really) received the best possible care from doctors and nurses who understood that their job was not only to make people healthy, but to strive to make them happy, comfortable, safe and relaxed. We couldn't have asked for better treatment. The thing is, hospitals are always unsettling when you're there for your child - even if you know everything is going to be ok. 

I am feeling deeply grateful here today. After a scary time of not knowing what was making Brennen so upset, and blood tests and x-rays and heavy pain medication, we can breathe a sigh of relief that it wasn't anything more serious than a broken bone. I am grateful that my boy is as strong as he is. I am grateful for the comforts of home and the life we have right now. I am grateful for the support of my family. I am grateful, too, for the challenges we have faced and all that we have overcome together.

Brennen had a temporary cast for almost 2 weeks, and we had to go back to the Janeway today - on his birthday - for more x-rays and to get a shiny new red fiberglass cast. I can think of a million other ways I would rather spend his birthday, but life had other plans for us, once again, so we are rolling with it.

Today is Brennen's 11th birthday, and we will celebrate our boy like we do every day - surrounding him with love and laughter and people who make him happy.

Eleven!! Holy Crap. It has been a wild ride, but we are loving every minute! I feel like today is my birthday. I know it's not, but it sort of is.
Thank you, Brennen, for bringing me into this world!

Happy Birthday! I love you!

Today, and for the next three weeks, Brennen will be keeping me on my toes.. while I am trying to keep the pressure off of his! 

Tuesday, February 2, 2016

Benjamin's Wish

You guys, this has been such an incredible day! One of Brennen's dear friends (one of the 'Friday Friends' I talked about HERE), was granted a wish through the Children's Wish Foundation! I've watched Benjamin grow up, and have spent so much time with him and his family, so it was an absolute honour to be there today when he received such a special gift.

Benjamin's mom, Lisa describes her son as follows:

"Benjamin is an incredible 11 year old little boy. He has gone through so much in his life, and he deserves every bit of happiness that can be brought his way. He was born 15 weeks early (at 25 weeks gestation) and spent over 6 months in the NICU, just trying to survive each day. He had a very difficult first few months of life, and came home on oxygen and monitors to help him get stronger. He's had many stays in the Pediatric Intensive Care Unit, numerous surgeries, and he's had too many "close calls". Despite all of this, Benjamin has the biggest and most genuine smile.

Benjamin is diagnosed with spastic quadriplegic cerebral palsy. He has chronic lung disease, he wears a cochlear implant, he has vision loss (but sees well with glasses,) and he has a seizure disorder that is controlled well with medication. He is g-tube fed, and he is nonverbal but vocal when he wants something or is excited! He has the best brother and sister who see him as a regular kid who just needs some extra assistance with things. He enjoys music, doing Legos, and watching hockey, Wipeout, America's Funniest Videos, and anything else that makes him laugh. He is a very happy boy!"

Today, Benjamin was granted a wish by The Children's Wish Foundation! Lisa says, "We have chosen to get Benjamin a Hippocampe, which is a type of all-terrain wheelchair. It will allow us to take him on trails, in the snow, and on the sand - places that are pretty much impossible for him to go in his wheelchair."

Wedgwood Insurance Limited raised money for the Children's Wish Foundation, and presented a cheque to Benjamin's family for $10,000 - the average cost of a wish. When the staff at Wedgwood found out how much the Hippocampe actually costs after all the accessories are added on (about $15,000), they said they'd write another check for the additional amount! How incredible is that?!

Lisa added, "We are beyond thankful for their generosity. This will give us so much freedom to be able to take Benjamin places that he otherwise would not be able to go."

Anyone who has tried to push a wheelchair through the sand (or the snow more often here in Newfoundland) knows that it is nearly impossible. This greatly limits the activities that someone in a wheelchair would be able to participate in, and the locations that they would be able to explore.

A Hippocampe is an all-terrain wheelchair that enables everyone, of any age to enjoy outdoor activities to their full ability. Benjamin will now be able to explore sandy beaches, snowy trails, and off-road paths with his whole family, instead of having to either stay home, or take an easier route. 

The Hippocampe comes with all-terrain wheels, large beach wheels, and a ski attachment. 

Click HERE to see the story on CBC News

Benjamin, I can just imagine the fun you are going to have in your new all-terrain wheelchair! 

You're off to Great Places!
Today is your day!
Your mountain is waiting,
So... get on your way!
- Dr. Seuss, 'Oh, The Places You'll Go!'

You can donate to the Children's Wish Foundation by going to
Help grant the wish of a child living with a life threatening illness or life-limiting disability today!