Winding Down 2012...

I hope the holidays find you surrounded by those you love and a sleighful of joy! For me, this is time for introspection – on the year closing out and the one coming in. In many ways we have been so fortunate, I wanted to take a moment to share some of the people and new places that are making a real difference!

Thomas completed his 1st term at ACE (Academy of Conductive Education), he has settled really well and works cooperatively with many staff who assist him in his goals. ACE's staff/student ratio is unusually high, a teacher/conductor who leads and a dedicated pair of hands to help each student reach their potential - this allows for a full day of dynamic learning.

I had the privilege to observe Thomas during a full day of school last month and was so inspired (and relieved) to watch him participate with his utmost attention - outcomes he has to-date been unable to meet. Physical, sensory and behavioral barriers that previously interrupted learning and isolated him were kept at bay. Thomas also eats with his peers, socializes and takes his turn to answer questions and produces many pieces of work.

So many experiences that elude children with cerebral palsy are part of ACE's day. Autumn leaves and pinecones are brought into the class so that children can touch, smell, and experience them fully. Students are blindfolded to smell/taste sweet and sour objects (to learn and enhance their sensory awareness), they participate in cooking, cleaning and role playing different community leaders- all while counting, spelling and differentiating shapes and colours. Science experiments include creating tornados and rain storms, and taking the temperature of different solids. Movement is paramount; the children do not sit for long and are expected to do as much for themselves as they can, a key ingredient to their learning.

Pages and pictures fill Thomas' activity book that pack a 4 day program with multiple outcomes. Thomas has exceeded goals he previously did not meet in his IEP (individual education program; his teacher told me he has made the most tangible progress in the class - this month he was chosen Student of the Month!

Thomas also sees a new speech therapist at home (Sarah) who challenges him to work on articulation and sentence formation. Paula, his new occupational therapist is working with Thomas to improve both sensory and fine motor control. His development is well-covered off!

We are now very settled into our new home and enjoying living in the very west end of Toronto, central Etobicoke. Our neighbours are friendly, kind, very elderly and quiet - we fit in well! We have an amazing park behind us that connects us with the younger local families. Thomas is making himself well-known in the neighbourhood.

This past fall, our old neighbours on Harshaw held their annual street sale and included Thomas in their event. Despite a rainy start, we persevered and sold valuable treasures and tickets for Thomas' raffle. Quite unexpectedly, Thomas became the chosen beneficiary of an annual Pig Roast held at Tessie McDaid's Irish Pub in Etobicoke. The roast and silent auction, frequented by guests who had no previous knowledge of Thomas raised $6,000 towards Thomas' school and therapy. A true blessing! ACE is an added expense for Thomas, so this really helps.

This fall I had the honour of attending an awe-inspiring Gala that raises money and awareness for children with neurological disorders. Through March of Dimes, I met one of the founders of Three To Be, the mother of triplets born with cerebral palsy. Dana and her husband not only pour themselves into providing the best care and future of their three exceptional children, they further channel time, talent and hope into programs and research to support their wider population. Three to Be is a story that should be shared globally and I promise if you visit their website and watch their video of their incredible journey, you will receive the gift of courage and hope that is truly one of a kind. The theme of this year' Gala was "Heroes Among us” and not only was I proud to attend, but proud that Thomas was included in their depiction of such heroes (see video).

Truly it has been an amazing year. Full of steps forward and a few unfortunate ones back. It continues to be both challenging and rewarding to raise a child with multi-exceptional needs and it goes without saying, new friends and old favourites make life much easier for us. We are grateful to all of you for asking about Thomas, cheering on his success, contributing to his care and enriching his life. May Santa reward you big time!!!

Here’s wishing you all the good things you deserve this holiday season.
With much love and thanks,

Linda

A New School Year, A New Opportunity...

As summer closes and a new school year begins, I wanted to take a moment to share news about some very exciting developments for Thomas. You have all been so kind to ask. Life has been so busy for me to even pick up a phone so please forgive the long-awaited post.

Last month we moved to a bungalow in Etobicoke. Moving is never fun but at least it’s over. The house was very carefully chosen and is still being modified for safety and accessibility, but the great news is no more stairs! Thomas has a large play room/gym (20x10') off his bedroom dedicated to his learning so he’s thrilled too.

Thomas is doing really well. We’ve had a few set backs along the way, but overall his development greatly supported with regular physiotherapy that refines his mobility and allows him more freedom to move. Thomas also continues to enjoy therapy horseback riding which promotes balance and control while riding "Flurry".
This summer Thomas participated in camp run through March of Dimes which specializes in the same mobility taught at Ability Camp – a program he’s participated in since he was two. Both organizations follow the Conductive Education (CE) approach by teaching children (and their parents) to become more independent by changing their daily lifestyle. By repeating tasks and integrating intentional movement with learning, the brain creates alternate pathways to send messages to muscle groups creating the desired movements, recovery and rehabilitation. The learning gains from this approach have been nothing short of phenomenal for Thomas over the years—getting him out of the wheelchair, walking from A-B, being engaged and empowered to do so many tasks while learning academics. It was huge added value to have access to this learning so close to home - and not having to travel out of town for lengths of time.

And now for the really BIG news…

Thomas has been accepted into The Academy of Conductive Education (ACE), a new service offering of March of Dimes Canada! It is the first not-for-profit Ontario Ministry of Education-approved private school for children with neuro-motor disabilities guided and grounded by the practice and principles of conductive education.
Staff resources for ACE include a principal, conductors, classroom assistants, and Ministry-certified teacher employed by March of Dimes. Thomas will also be supported by physiotherapists, occupational therapists, speech language pathologists and specialists in augmentative and alternative communication strategies. His learning will be supported by a 1:1 staff ratio – an incredible blessing on its own. And staff are exceptional!
This is a dream come true for us. We can’t wait to see what Thomas will accomplish, but the program comes with a hefty fee: $15,000 per year (more than double if not highly subsidized by March of Dimes). As such, we have started a massive fundraising effort.

First up is Tee Off for Thomas online golf auction. Please visit and circulate to any of your golfer contacts! As you will see, some incredibly generous golf courses (and a weekend getaway to NYC)have donated packages to support Thomas’ launch into school.
In spite of our recent move, we will also continue to participate in Harshaw's annual street sale with a raffle in support of Thomas. Raffle tickets can also be sold by those wishing to volunteer.

As always, we are thankful to all of you for your support. If you can think of any ideas—big or small—to help in our efforts it is so much appreciated. If you have any great ideas for a fundraiser, ways to include us in any charitable activities you’re already engaged in, or even point us to some golf courses that might help us with the spring version of Tee of for Thomas we’d love to hear from you. Your support has always paved the way to opportunities to further Thomas’ development and on his behalf, I cannot thank you enough.

I wish you all a wonderful September and start to fall and look forward to continued updates very soon.

Thanks again,
Linda