Thomas had a busy year! Not just in terms of being active, but he ventured into new territory which overall was very worthwhile…
High on that list was an introduction to the Adeli Suit otherwise known as “Suit Therapy” (shown right); a concept designed by the Russian space program to counter the effects of long-term weightlessness on the body. The suit was adapted to treat children with physical disabilities to recreate the framework of forces on the body, they otherwise lack. Through a system of elastic bands and pulleys, the suit stabilizes the torso to allow more fluent and coordinated movement for the limbs.
Thomas and I attended an open house at Revivo -a new clinic in Scarborough that offers Canada’s 1st/only Adeli treatment. I’ve always been intrigued with the concept and never had the chance to see it up close. I entered Thomas’ name in a draw for a complimentary 3 week intensive session and was delighted to receive the call that he had been chosen! During the month of August Thomas attended 3 hrs. of therapy each day, he was managed by a 2:1 ratio of highly trained therapists who kept him constantly engaged and moving in ways that were compromising for him. I noticed less tightness in Thomas’ legs; his muscles relaxed and moved with more coordination and his balance was more centred. At the end of each session, Thomas would ride an adaptive bike with great ease and pride - a nice reward to the end of his workout!
Thomas is doing weekly sessions during this month, and if affordable, we will include Suit Therapy in his ongoing physical maintenance.
With an adaptive bike now at top of Thomas’ wish list, we were thrilled to acquire one this fall! Surfing the net led me to a gently used bike for a fraction of the $5K price (yes, $5K!) located in New Jersey. Friends of ours who live in NJ jumped in to assist, not only picking up the bike up and driving to Ontario, they also insisted on paying for it! We are so grateful to Mary and D’Arcy for their extreme generosity. Needless to say, Thomas absolutely loves his bike (pictured left).
Not so new is Thomas’ continued enrolment at the Academy of Conductive Education (ACE) where staff describe him as “an enthusiastic member who knows how to have fun and ready for new tasks and challenges!” And challenged he is. Twice a week, Thomas participates in a full complement of learning that calls on his utmost physical and cognitive participation. ACE recently acquired an Eno Board which allows instruction to be done in an interactive way and the children are expected to stand up to participate in various lessons (see photo). Thomas’ mobility is improving; he completes his transfers more easily in/out of his potty and chair and proudly walks the parallel bars by himself! Similar to home, all children must complete their daily living skills with the least amount of assistance; paying attention, participating and being social are also key. Thomas interacts well with his peers and thrives in a class of 3 students who receive sufficient individual attention to develop and learn beyond their limitations.
Thanks to a very successful fundraiser - another new venture, the majority of ACE’s fees was offset by sponsorship towards Thomas’ participation in the annual Toronto marathon. A short clip of photos captures this heartwarming feat, as well as local press that followed the event from beginning to end. I remain very grateful to Michael Rumi for creating this opportunity for Thomas and championing him in this race AND to the many generous donors who supported their efforts and cheered them on.
This year, we received news that Thomas meets criteria of Autistic Spectrum Disorder (ASD). It was a diagnosis that followed a series of assessments to further observe Thomas’ many behavioural, communication and sensory challenges previously linked to Cerebral Palsy. I am processing this information with sensitivity and respect for the very complicated nature of Thomas’ challenges - I always knew were very unique, while working closely with a # of professionals and organizations who support ASD to create strategies to maximize Thomas’ function and limit behaviours and compulsions that surface throughout his day.
Thomas’ other medical news remains good; he is otherwise very healthy. His bone density is close to par with other typical children, thanks to being so active and mobile. His circulation and digestion is good, he eats well and sleeps well and does so independently. He is rarely sick and always eager to start his day in the morning and find out what is happening. He is stimulated and leads as full of a life as possible!
We continue to access and participate in programs and services in our community; Thomas attends a local library program and also started attending cooking classes at our local Loblaws. We joined Variety Village this year which is a fabulous recreation facility for all abilities, with an accessible pool, snoozlelin room (for the sensory seeking/deprived) and a track to ride his bike all year round!
We also became more involved with Easter Seals this year –another amazing organization. Thomas and I attended family camp which offers all classic activities like fishing, archery, sailing and campfires; Thomas enjoyed the new experiences and loved to swim each day - staff provided excellent support and made it all possible. We also attended their annual regatta this summer and met a wonderful family who treated us to a sail along Toronto’s harbour. Thomas again happily attended their annual Christmas party. Next month, he was chosen to participate in fundraiser involving the Toronto Maple Leaf hockey team and he will skate with many of the players! Easter Seals provides an enormous amount of activities for children to enhance their lives.
In closing, I would like to recognize the many individuals who supported our very full year and the many opportunities that afforded Thomas to further his development. I would particularly like to recognize the very large multi-disciplinary team of professionals who work cooperative to support Thomas’ many medical and developmental issues. You do so with compassion and encouragement, you further allow me to email you. We are so fortunate to live in a city that offers access to top medical services and professionals and you most certainly feed into Thomas’ progress.
This coming year, I will endeavour to write more frequent updates and perhaps even tread into social media (gasp!). It’s daunting to try to capture it all in one blog and I can imagine trying to take it in too - esp. during such a busy season.
And on that note, I would like to wish all of you a very joyous holiday – for Christians, the 3rd week of Advent is the spirit of Joy, so I spread that spirit in abundance your way!
Thank you again for your continued interest, encouragement and support of Thomas, for blessing us for another year with your many gifts. Should you wish to support Thomas’ ongoing progress, please see the online contribution button (top left), or contact us directly.
We look forward to another busy and productive 2014.
Linda
