In March, we returned to Ability Camp for 5 weeks (see separate blog, sidebar). Being his 7th session, Thomas was familiar with his teachers and the “drill”, and participated well in the daily classes that challenged all motor skills. Living away from home and all its distractions allowed us to further concentrate on total care and function and Thomas made noticeable gains in all areas of development.
Thomas completed his first year of school at Sunny View, a school dedicated to children with physical limitations. It’s a lovely, functional facility and Thomas was happy to attend, yet it was a challenging transition. The obvious drawbacks presented from sitting in a wheelchair most of the day and Thomas’ participation was low; he was disruptive and difficult to engage and was under-achieving. It also became apparent he had sensory issues; he was distracted and reactive to noise and surroundings and had difficulty transitioning from one activity to the next. Several meetings took place with teachers, therapists and administration to problem solve. It became apparent that Thomas required more attention and skills than staff could accommodate and we began the first steps to identify and defend that. These efforts continue and have necessitated a number of additional assessments. Meeting the needs of a multi-exceptional child in the school board requires a lot of time, effort and patience and strong advocacy skills…
We enjoyed an unusual summer staying home this year and created a “home based” plan, with a primary goal of retiring the wheelchair. It was stabilizing, less expensive yet required a lot of energy and creativity. I hired a part time caregiver and as luck would have it, found a physiotherapist from Chile who was spending her summer in Toronto looking for casual work. Barbara lived with us for 2 months and experienced what she described as the “privilege of seeing the child in the home”. Thomas’ days were full; his learning took place by participating fully in daily life and play. It was necessary to have the extra set of hands; engaging a child in all his activities is mentally and physically exhausting. Thomas took part in early childhood development programs at the local library, visited indoor and outdoor play centres, and even spent time gardening and cooking. I ambitiously took him to Ontario Place and Wonderland and was reminded about his and my limits. The constant activity and engagement was stimulating, Thomas was mobile and free, and looked forward to his days with anticipation. It was an exercise in itself to plan and sometimes required two people to facilitate an activity.
Throughout the year, Thomas continued his movement lessons with his therapist Judy - who comes to our home now and saves us time, effort and travel. During the summer, these lessons intensified with blocks of 10 per week, followed by a prolonged break – an advanced formula that allows skills to be “clustered” then left alone to be integrated/adapted to the child’s environment. Thomas did well, he interspersed his therapy with being on the move and engaged, so much so that he finally made a leap with his potty training and spent his entire summer out of diapers and fully reliant on the potty during the, even initiating the need to go. We committed ourselves to that goal and took his potty everywhere. Regrettably Thomas was unable to sustain his success during school, but I feel confident we can get it back.
This fall, Thomas began therapeutic horseback riding therapy, which he loves. It’s recreational and promotes balance and independence, it adds variety to his learning. He also continues to swim with mom at Bloorview Rehab’s pool, learning to be functional in the water while still having fun. Downhill skiing is next on our list!
Earlier this year began a renewed medical investigation into the cause of Thomas’ neurological issues. A series of genetic tests were completed to rule out different syndromes and disorders. A few months later, new finding from an MRI led a metabolic and neurology team at Sick Kids Hospital on a path of a possible new diagnosis. This investigation continues and I will share information as it becomes available. Unrelated, we further discovered that Thomas has a thyroid issue that affects his calcium levels and he is under the care of an endocrinologist. Last week, during an eye exam, Thomas received news that his vision is weak and he requires glasses.
Despite the obvious trials, worries and roadblocks, we are ending 2011 feeling optimistic, resilient and ready to conquer our challenges head-on. We continue to be surrounded by many people who are vested in Thomas’ success and well being. Family, friends, community and professionals, collectively lend their support towards a goal of possibilities and promise for a better life. The people who continue to surprise and touch me most are those who are new to us; strangers who reach out from nowhere and sometimes far away. This year was no different than others, and I would like to share a sampling…
In February I received an email from a man in the UK who, believe it or not, learned about Thomas on a BBC radio show. He contacted me wishing to contribute to Thomas’ fund financially and with airmiles. A different contribution came from the contractor across the road who unbeknownst to me, witnessed me struggle with Thomas’ wheelchair each day up my front steps. He insisted on building a new ramp and he did, that weekend. Before leaving for Ability Camp, I took Thomas for a haircut and his hairdresser, a generous donor to his raffle, refused payment then gathered a # of bath/beauty products for “mom”. This summer I responded to a 22 year old who contacted Thomas’ school wanting to volunteer her time with a family in whatever way was most needed. Nikki is now part of Thomas’ special circle of caregivers and provides respite care on alternating weekends.
These random acts of generosity and kindness touch me more than words can say, they not only provide added support to Thomas, which in itself is a huge benefit, they give me insight into a deep and compassionate humanity I don’t think I would have otherwise encountered or fully appreciated. My strength and inspiration are fuelled by that spirit and the continuous encouragement I receive from people I know and people who randomly stop me when I least expect it and often need it the most.
It is that good will I would like to especially spotlight, with my full appreciation.
On that same note, this year The Hope for Thomas BBQ celebrated its 5th anniversary, a 3rd party event that was spearheaded by two guys who took leadership and inspired others to join them in raising money and awareness in support of Thomas, 5 times. I recently totalled their proceeds and was astonished to learn that $70,000 was raised. Unsolicited, yet powerful benevolence that has translated itself into untold opportunities for Thomas.
I would like to extend my recognition and heartfelt thanks to everyone who continues to support Thomas in every shape and form. You collectively keep my son happy and bright, you give him hope for a future he deserves and is capable of.
I will continue to share his journey with you throughout 2012 and wish all of you a very Happy New Year with blessings of health, happiness and good will.
Linda
