Tuesday, June 27, 2017

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.


Thursday, June 22, 2017

Easter Seals Accessible Park & Playground

Easter Seals NL is building our province's first fully accessible and inclusive park and playground, and I can't even tell you how excited we are!!

Playtime is important for ALL kids, and like all parents, I want my children to know the joy of play, but when your child has a physical disability, this can sometimes pose challenges. Most playgrounds are not accessible, meaning that the equipment is not easy to navigate by individuals with wheelchairs or other mobility devices. The pea gravel that is commonly used to surface outdoor play spaces is almost impossible to push a wheelchair through, and the majority of the play features are not usable by people with disabilities. The unfortunate reality is that playgrounds have traditionally been built without full consideration of the accessibility of all people.

(This an older photo of Brennen and I at a playground in our neighbourhood. It was quite the struggle for me to get his chair onto the rocky surface, and once he was there we were stuck. I actually had to get Andrew to help lift him out. It was challenging, and there was nothing for Brennen to do at this playground, but we smiled like we were having fun anyway!)

Easter Seals NL has plans to change the playground experience for families like mine. Located on the tranquil grounds of Easter Seals House on Mount Scio Road in St. John's, the new playground will be a place where persons of all ages and abilities can play together.

The plans include a sensory garden, amphitheater, multi-court and hockey rink, and a playground that features a wheelchair accessible glider, therapeutic rings, activity panels, and ramps to each play structure with double rails that allow for continuous gripping support, wheelchair turning areas and transfer stations.

This is an artist's rendering, but can you even imagine??!

On June 21st, Easter Seals held a groundbreaking ceremony for all donors, sponsors, community partners and friends of Easter Seals!

Easter Seals Ambassador, Nathan Chaulk spoke about what it means to him to have an accessible playground here in our community:

"A kid's work is play. I remember when I was a kid, I used to have to be looking in from the sidelines, and this will let everyone get in on the action regardless of their disability. I would like to thank Easter Seals and the donors for making this dream come true!"

Having an accessible playground means that it will be as easy as possible for everyone to play, regardless of their abilities or disabilities. This playground will promote physical, cognitive and learning experiences that will enrich play experiences for all children.

As a parent raising little ones in a technology-driven world, there is just something so appealing to me about old-fashioned play on an outdoor playground - the kind that encourages the social, sensory and interactive play that all children need. My parenting journey may not be typical, but I know one universal truth about raising kids - play is a key component of childhood development. All kids need to play.

Please support the Easter Seals "See Ability in Disability" Capital Campaign to build Newfoundland and Labrador’s first fully accessible and inclusive park and playground!

Click HERE to donate!

Monday, June 19, 2017

Cork and Canvas

About once a month, Easter Seals NL hosts a Cork and Canvas night as a fundraiser for their programs and services for persons with disabilities. I had never been to anything like this before but am always up for trying something new, so this weekend my Mom and I decided to give it a go!

Mom has a bit more experience painting than I do, so she was cool, but I was completely out of my comfort zone. I arrived thinking that I really wouldn't be able to keep up with the group, but under the step-by-step instruction of Parinita Verma, I think I did quite well!

Parinita has been involved with Easter Seals for several years now. She started by doing a painting auction fundraiser, and since then she has been hosting paint nights that are very popular and sell out every time! Parinita also does henna body art and has done several henna fundraisers for Easter Seals as well (I might have to try that next!!)

Cork and Canvas is a wonderful excuse for a night out with friends or family members. It is fun, relaxing, and all for a very worthy cause. There is no experience necessary, and they provide all of the necessary materials so you don't need to worry about a thing!

My painting started out pretty rough. I couldn't get the petal shape the way I wanted it at all, but I stuck with it. I stuck with it because I wasn't about to let the fear of looking stupid keep me from trying. (In fact, you should never let the fear of looking stupid keep you from trying!) It was tricky not to look at what others were doing, and to compare your work to theirs. Each painting was a little bit different, but they were all really great! By the time we got to the shading, my petals had developed nicely and I was quite happy with my work!

Here's how it went:

Who knew I could paint?!! I was so impressed with everyone's results! So many beautiful masterpieces were created in this one night!
Thank you to Parinita for your wonderful instruction, and for being such an incredible supporter of Easter Seals. I will definitely do this again!

Thursday, June 15, 2017

Mad Rocks

With three children keeping us extremely busy, Andrew and I have very little down time. There is always an appointment to keep or a deadline to meet or a pile of laundry to tackle, and every now and then we just need a break. Fresh air always does the trick for us, but the weather hasn't been great here lately. We are still waiting for it to warm up but we get very excited when we see the sunshine! We took advantage of a nice day last week and drove out to Bay Roberts to do the Shoreline Heritage Walk (we call it the Mad Rock Trail). This 6km trail starts at the tip of the Bay Roberts Peninsula and has incredible views of Conception Bay. It turned out to be pretty cloudy and grey, but we love breathing in the salt sea air, and will take it any way we can get it!

Here are some photos of our hike on the Mad Rock Trail!

We stopped at a pebble beach that looks out to the Three Sisters rock formation, taking some time to enjoy the view and the sweet sounds of the ocean crashing up against the rocks. This is our happy place! Well, ok, we are happiest when we are all together as a family, loving our littles with everything we've got. Our children are our obvious priority, but when we're busy and stressed and there's not a whole lot of sleep happening, we make an effort to trim off excess responsibilities and lighten our load. It is amazing how recharged we feel after just a few hours away from it all.. no cell phones, no laundry, just the two of us talking about life and how good we've got it.

"You only live once, but if you do it right, once is enough." - Mae West

Sunday, June 11, 2017

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.