KoolKapes for Cool Kids

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

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

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

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

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

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

Alison - Living a Life Without Limits

You might remember our little friend, Ava, who I have written about several times now. Ava was the Janeway Miracle Child last year, after taking her first steps and unexpectedly learning to walk right here with Andrew and I. I say "unexpectedly" because Ava was born with a condition that greatly limits her mobility. We were not sure she would ever be able to walk independently (actually, I hate to admit it, but we were pretty sure that she wouldn't), but Ava was determined and incredibly motivated and she proved us all wrong! There is no stopping her now!

These are the stories I love to share - the stories of individuals who don't let their disabilities hold them back, who recognize their own potential, and prove that on the other side of fear is freedom!

I am excited to introduce you to Alison - an incredible young woman who refuses to allow her physical condition to limit her lifestyle. She has so much energy and enthusiasm and confidence in her own abilities. Despite having the same condition as Ava, Alison has recently realized her dream of being able to drive her own vehicle independently. She has pushed the boundaries, not allowing herself to be limited by other people's perceptions or ideas of what she can or cannot do.

I had the opportunity to chat with Alison at an event that we both attended recently, and she was excited to show me her new vehicle. She was also happy for me to share her experience here on my blog because "it demonstrates truly how many opportunities exist for people who may need some support or help being creative and thinking outside the box."

I will let Alison explain:

"My disability is Arthrogryposis Multiplex Congenita, which means that essentially my joints don't function the way I'd like them to. It hasn't prevented me from doing anything, though. There are some minor things that I'll always need help with, but I have traveled to eight countries, earned two degrees, and have had countless life experiences many "able-bodied" persons will never have! 

But driving didn't come as early for me as it did for my peers. I had always envisioned myself driving. It's never been a 'wonder' or a 'hope'. I knew I could do it, but I just did not know how it would be accomplished. Unfortunately, the options and possibilities are limited here on our island, so I did not receive a wealth of support or encouragement. While this was disheartening, I was still sure there was an opportunity out there. I was referred to Constance-Lethbridge, a rehabilitation centre in Montreal, where Occupational Therapist Dana Benoit and her team put my plans into action through their Driving Evaluation and Vehicle Adaptation Program.

Within roughly an hour of meeting Dana, she had me driving two different types of vehicles independently. After merely two days, I had a vehicle fully designed for me to drive! The garage started their work, and two months later my accessible CRV was in my driveway in St. John's! The car is one-of-a-kind, and can be operated completely hands-free. My hands are most affected by my condition, so while one of the vehicles we tried did involve me steering a horizontal wheel, we decided on foot-steering. This way, the original steering wheel is intact and anyone else can get in my car and drive it 'normally'. 

My gear shifts are now buttons on the door panel which I hit with my elbow. The indicators are on my head rest. There are voice scan buttons on my arm rest, a horn by my knee, and a simple stick for things I can't reach easily, like the radio controls. Thanks to Dana, Jean, and Stephane in Quebec, my dream became a reality. There are not enough words to convey my appreciation to them. I am so much more independent now. I am even accepting a position in Gander to pursue my career in psychology and I can easily commute back and fourth as I wish!

Alison, I am so very happy for you! I could hardly contain my excitement when you were showing me how you use your vehicle, just knowing how this opens up your world and creates so many more opportunities for you to have a full and fabulous life! There really is no limit to what you can do!

I am the first to admit that I wasn't always so optimistic. Before Brennen was born, my experience with persons with disabilities was very limited - like, I didn't even know anyone who used a wheelchair, or who had limb-differences, or any sort of physical limitation. I am sure that I had some skewed belief that they were somehow less-capable, or unable to do certain things, but the truth is that we are all capable of so much more than we realize. Sometimes you just need someone to believe in you and to give you that chance.

My perceptions have changed quite drastically in the past twelve years. I no longer view disability as an inferior human experience (I feel terrible even writing that!!). I hope that others are also able to replace their natural tendency of judgement with kindness and love, to look beyond differences and see people for who they are inside - for what they have to offer, rather than what they are lacking or how they are different.

-Julie

The Paul Reynolds Community Centre

Having grown up in the East End of St. John's, I can remember many Summer afternoons spent hanging out at the Wedgewood Park Recreation Centre. I remember attending birthday parties in the gym, taking swimming lessons in the pool, and playing tennis with friends on the outdoor courts. The centre served its purpose in providing a place for the community to come together, but it was dated and posed challenges even when I was a child.

We have moved into a new era, and with that begins a new legacy in Wedgewood Park. The old centre closed and was torn down in September, 2016. Construction began on the new facility in June, 2014 and was completed just recently. The Paul Reynolds Community Centre held its grand opening on Thursday, June 8th, 2017 and is now open to the public!

The Paul Reynolds Community Centre is a modern facility that will serve the residents of St. John's for many years to come. The centre was the subject of numerous well-attended public consultations, and I was happy to know that creating a safe and inclusive environment was at the forefront of the planning process.

I recently had a tour of the facility, and am thrilled to share with you the inclusion and accessibility features of the new Paul Reynolds Community Centre!

There is accessible parking near the main entrance of the building, with an automated sliding door main entrance. The building features an open-concept lobby, elevator access to the second level, and accessible counter heights at the front desk. There are gender neutral, male and female change rooms and washrooms, and a private accessible change room.

We really enjoyed swimming together as a family when Brennen was younger, but as he got older and bigger, the change rooms in the city's public facilities were not able to accommodate our needs. At twelve years old, he is much too big for an infant change table, and there was nothing else available to us. At times, we would lay him on a bench out by the lockers and try to quickly dress him before he got too uncomfortable. It would take two of us, both Andrew and I, to keep him on the bench without falling, and it was entirely unsafe for everyone involved. Changing him became far too challenging for us, so we haven't taken Brennen swimming now in quite some time. We believed that even though he enjoyed the water so much, Brennen would not be able to swim because the facilities here were not accessible to him.

Natalie Godden, Manager of Family & Leisure Services with the City of St. John's was excited to show me the private accessible change room in the new Paul Reynolds Community Centre, and for good reason! The room features an adult size hydraulic change table that lowers to the floor, and has a weight capacity of 440 lbs. A ceiling lift, grab bars for the toilet (LR and RH access), and a large wheel-in shower. I got a little emotional at this part of the tour, just thinking about how something like this can have a profound effect on the lives of persons with disabilities and their families. This change room means that families like mine will now be able to swim together, to have fun together, and to be fully included in recreational activities just like everybody else. It means that my son, and other individuals with disabilities can participate in activities with a sense of belonging in a community that welcomes and supports all of its members. (This is perhaps our greatest concern as parents of children with special needs - that while we work hard to overcome challenges and make appropriate accommodations, we know that there is no guarantee they will feel included.) 

The 74,00 sq ft. facility houses two pools: a 25 metre lane pool, two water slides, and a warmer-water leisure pool with a zero depth "beach entry", lazy river and splash pad.

To enter the lane pool, individuals with disabilities or mobility restrictions can avail of the Poolpod, which is located on the side of the pool just as you enter the Aquatic Centre.

The Poolpod is a multi-award winning swimming pool platform lift that was developed for the London 2012 Olympic and Paralympic games. It is the first of its kind in North America, and is transforming pool access, offering a more independent and dignified way of entering the water than the traditional sling and hoist. The Poolpod can be used either standing, or with a submersible wheelchair that allows users to transfer from their own wheelchair in the privacy of the accessible changing room.

There is a 1,500 square foot dedicated children's area that will host a childcare and after-school program as well as summer day camps and playgroups. I was more than happy to see a collection of dolls with various adapted equipment such as a wheelchair, walker, helmet, and a guide dog. (We have come a long way since I was a kid!)

There is also a 1,500 square foot senior's area, a dedicated youth room, a music room, several large multi-purpose spaces, and a full-sized 6,700 square foot gymnasium just waiting to be explored by kids of all ages who are eager to play!

The Paul Reynolds Community Centre is a first class facility providing state-of-the-art recreation, leisure and sports opportunities that are inclusive of all community members.

We are very excited to be able to take our son swimming again! Not only is it one of his favourite activities, but it also has therapeutic value for him. For Brennen, as for many individuals with disabilities, swimming is an opportunity to feel freedom through weightlessness. The warm water facilitates muscle relaxation, stimulates body awareness, and improves circulation. We know that swimming is good for Brennen, but getting him into the water is not only beneficial, it is fun for him and for our whole family. Swimming is a right of childhood that no one should be excluded from. The new accessibility features of the Paul Reynolds Community Centre will open up access to pools for people with a range of requirements, and will be a great asset for increasing participation in our community, encouraging more people to be more active, more often.

The City of St. John's is committed to providing inclusive and accessible recreation and leisure services for all participants. For more information on inclusion and accessibility, visit www.stjohns.ca or email inclusion@stjohns.ca

To see the full recreation swim schedule for the Paul Reynolds Community Centre, click HERE.

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 http://www.childrenswish.ca/

Help grant the wish of a child living with a life threatening illness or life-limiting disability today!