Tuesday, August 15, 2017

Adventures with Serial Casting

Brennen had botox injections a couple of weeks ago, which I wrote about HERE.

The botox helped to reduce the tone and muscle tightness in his left leg, which had become a bit of an issue and was causing his legs to pull to one side, putting his hip at risk of dislocating (once again). 

Since then, he has been undergoing serial casting to hold and stretch the muscles in his leg, and to correct a turn in his foot that had become quite pronounced. The casts hold his foot and leg in a position where the muscle has a slight amount of tension, causing it to adjust and become longer and more flexible. With serial casting, a new cast is applied each week, with the angle being changed slightly to stretch the muscles and move the joint a little closer to the correct position.

We know that Brennen will never walk or bear weight through his legs, but we want to do everything we can to promote his highest level of function. Serial casting will improve his passive range of motion, and will decrease the risk of him needing further corrective surgeries down the road.

He had one week with the purple cast (that he picked out himself!), then a second week with a shiny green cast. Other than scratching up his 'free' leg, the casts don't seem to bother him at all! We have been out on the go and Brennen has been quite happy!

We took a walk around Quidi Vidi the other day, and just had to stop for lunch at the new QVFC - Quidi Vidi Fish and Chips truck! 
Oh my God, you guys. The "Iceberg Beer Battered Cod" is to die for!!

So, we are pretty sure this will be the last week of casting. Brennen will get his cast off on Wednesday, and have a new AFO made to hold his foot in an aligned position, and to keep the flexibility that was gained by serial casting. We also have a fancy new hip abduction pillow that he uses at night to keep his legs apart. Fun stuff.

I have to say that even with all of the appointments and casts and botox and seizures, and everything else that comes along with having a child with a complex disability, we have been enjoying the summer, and making the most of the time we have to spend together before Brennen goes back to school in a couple of weeks! It's been nice to relax a little bit these past few days. We get so caught up in the craziness of our lives - the constant pressures, the demands of our children, and the accumulation of many little stresses that can make things start to seem really hard and out of control, it's easy to forget that much of life is actually not so hard! It's days like this one, spent enjoying the sunshine and warm temperatures and a leisurely stroll around the most beautiful neighbourhood that brings us a welcome reminder of that balance - the good and the ugly, the hard and the easy. It's a complicated mix, and the weight of everything in life is constantly shifting. We are in constant motion, tipping the scales and readjusting, but the love we feel for our family is an overpowering force and things always have a way of balancing out in the end.

There are so many fulfilling moments in between the madness, and here is the truth: I love my life because it has an abundance of both.

Saturday, August 12, 2017

Stroll and Roll Relay

On September 30th, we will be participating in the 6th Annual Stroll & Roll for Easter Seals!

The Stroll & Roll raises much needed funds to allow Easter Seals NL to continue to offer quality programs and services for children and youth with disabilities right here in our province.

We look forward to the Stroll & Roll every year, because as much as it is about raising funds, it is also about bringing together a community - families, children, parents and caregivers, all united by a common thread: we live with, or support persons with disabilities. I have written many times about how important it has been for me to connect with other parents who are experiencing similar challenges, and I am lucky to now have so many friends in this community. It's the people we meet at events like this one who help me to think differently about disability and help to bring more understanding and acceptance to this sometimes intimidating journey.

The Stroll & Roll is open to anyone and everyone, and this year, we are inviting any of Brennen's friends and supporters to join our team! Come and enjoy a fun day with us, cheer on our little ones, meet some amazing families, and know that you are supporting a very worthy cause.

Register HERE and join us on Saturday, September 30th at the NL Sports Centre on Crosbie Rd. from 11:00 - 3:00.
We would love to see you there!!

Here are some of our favourite moments from previous years:

Help us help Easter Seals raise $20,000 to support their programs and services for persons with disabilities! 
We can do this! Click HERE to register!

Monday, August 7, 2017

NL Folk Festival

This past weekend, we attended the 41st Annual Newfoundland & Labrador Folk Festival in Bannerman Park.

The NL Folk Festival is growing every year, which means that the need for accessible services is growing as well. This was the Festival's fourth year with a dedicated Inclusion Crew, and the accessibility options have improved as a result. The organizers are pleased to continue working towards making this annual event more inclusive and accessible to all patrons. They proudly partnered with InclusionNL to come up with a comprehensive Inclusion Plan for the Festival.

The Inclusion Plan included:
  • Inclusion Crew volunteers – In addition to the general team of Folk Festival volunteers (all of whom were offered inclusion sensitivity training in advance of the festival), the Inclusion Crew were there to assist in any way they could for attendees to be able to access and enjoy all aspects of the Festival.
  • Designated accessible blue zone parking spots in the Bannerman Park parking lot with city-issued Blue Zone parking passes.
  • Free entrance to attendant (with City-issued attendant’s pass) accompanied by a ticket-holder.
  • Listening devices – The Canadian Hard of Hearing Association loaned the Festival listening devices.
  • Spare wheelchairs – Organizers tried their best to make the festival site wheelchair-friendly and were pleased to offer spare wheelchairs for short-term loan.
  • Designated blue zones in the audience to provide easy access for persons with a mobility disability.
  • Large-print and braille schedules for each session (available at the Inclusion Tent)
  • Accessible portable washrooms throughout the park.
  • Quiet zone – A safe space for people who may be feeling overwhelmed to sit out of the sun, away from the crowds. The hope was that this additional measure would enable more people to come to the event who would have otherwise stayed away. This space was conveniently located in the same space as the Inclusion Tent.

Access Advisor, a program of Tourism Quality Assurance that validates and assigns designation levels of accessibility, officially designated the Newfoundland & Labrador Folk Festival as Fully Accessible, and Hearing and Sight Accessible. These designations signify the Newfoundland and Labrador Folk Arts Society's commitment to enhancing accessibility for all persons, regardless of ability.

"The Newfoundland & Labrador Folk Festival is a celebration of community, and the inclusion measures allow people to get to know their diverse community, and encourages meaningful conversations that explore, embrace and celebrate the diversity of our shared human experience. It's also an opportunity to expand outreach, and enhance community engagement in order to stay relevant to our growing and ever diversifying audiences. The Festival also continues to be one of the most inclusive and accessible festivals in the country for seniors and persons with disabilities."

The NL Folk Festival truly is for the whole community, and everyone is welcome. Andrew and Brennen and I had a really great time checking out the various stages and entertainment line-up, including Amelia Curran and the Stella's Circle Inclusion Choir, who received a standing ovation for their heartfelt performance of 'Be the Change'. We were so happy to be able to attend the festival and not have to worry about accessibility, parking, seating, or other barriers that make outings difficult - sometimes impossible - for families like mine. The event grounds were easy for us to navigate, and there were plenty of volunteers on hand to assist us if we had any questions or concerns.

All music festivals should be accessible to anyone who wants to attend, regardless of ability. Access to the music, the emotions, and the feelings associated with coming together as a community at a live, outdoor event like this one is a wonderful part of the human experience, and having an inclusion plan in place so that everyone can participate is key to a successful festival. Organizers of this year's event have clearly demonstrated how access and inclusion can be at the core of creative planning, and how this can benefit the experience of all attendees.

Our community has made great strides in promoting inclusion and accessibility, and the Newfoundland and Labrador Folk Festival is raising the standards, embracing the needs of everybody and celebrating the great range of abilities that make us all unique. Seriously, what better way to bring people together than through music? It is a unifying force that cares not about disability, but instead allows us to share a common experience while rising above any discriminatory factors.

John Denver said, "Music does bring people together. It allows us to experience the same emotions. People everywhere are the same in heart and spirit. No matter what language we speak, what color we are, the form of our politics or the expression of our love and our faith, music proves: We are the same."

Thanks to Alick Tsui for letting me share his beautiful photos!

"The Newfoundland & Labrador Folk Festival showcases the skill, talent and ingenuity of some of the finest artists in our province, and everyone should have a chance to enjoy their magic. Our continuing work with our partner InclusionNL is aimed at offering a great experience to anyone and everyone who wants to experience the Festival." - John Drover, President of the Newfoundland & Labrador Folk Arts Society

"We applaud the Festival organizers and volunteers for their continued commitment to inclusion. This is the third year of our involvement with Festival organizers and we are proud of our expanded outreach within the community to help diversify audiences at the Festival, ensuring that many accessible features are offered again this year." - Kathy Hawkins, Program Manager for InclusionNL

The illustration above was created by Caroline Clarke and prints are available to purchase HERE
One good reason to buy a poster? $5 from every sale will be donated to the Newfoundland and Labrador Folk Arts Society!

Our thanks and appreciation go out to the Festival organizers and Inclusion NL, who played a large part in making this event as successful as it was. We had a fabulous weekend celebrating the rich spirit and culture of Newfoundland and Labrador - a place that we are proud to call home.