RECAPPING 2011...

Like other years, 2011 was very busy and eventful with a continued dedication to Thomas’ development and quality of life.

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

LOOKING BACK AT 2010

This past year was by far Thomas’ most busy and challenging. So much time/effort and resources revolved around his surgery which took place in June. Percutaneous Myofascial Lengthening (PERCS), a highly specialized procedure that releases contractions from the legs/ankles - areas that Thomas overused by pointing his toes, locking his knees and crisscrossing his legs when he attempted to stand, sit even lie down.

We travelled to Summit, New Jersey to have this done with Dr. Nuzzo (1 of 2 surgeons in North America) and extended our stay another week in NYC to receive immediate rehab. Thomas’ recovery was substantial – much more than I anticipated. Although the procedure was minimally invasive (pin-hole incisions that did not touch the muscle), the scope of the work changed the dynamic of Thomas’ whole lower body.

Thomas immediately gained movement/flexibility – his legs spread wider, he relied much less on crisscrossing and his ankles were pitched back to give him a flatter foot to stand (finally, he can wear a boot!). I noticed little things right away like reaching to pick things up from the floor while sitting in his car seat and pulling on the front belt; his hips were freer. Thomas’ knees folded more easily when he sat, sometimes dangling which was new. With added stability on his feet, Thomas could stand for a period of time with his walker- independent of my support (see pic right in moving hay ride!) and this stability transferred to his upper body, allowing more control of his arms and hands.

But there was misuse too; Thomas would spread his legs too much when he attempted to crawl, he was more prone to stand, even in situations that didn’t call on it and he engaged in a term called “jack-knifing", bending at the hips and holding his upper/lower body in a “V” while trying to sit/stand, instead of folding up/down in a squat.

Thomas also experienced much pain and trauma following the procedure and was in a state of disassociation; initially wincing and guarding his movement because it was so unfamiliar.

For weeks Thomas wore casts on his feet and knee immobilizers to bed to safeguard the new range. He now wears ankle foot orthotics to help reinforce new stepping patterns. Most importantly, Thomas must “use it or lose it” - his success incumbent on being on his feet and learning to access the available movement properly and override old patterns.

This created an immediate need for much more support; to provide Thomas with the therapy he needed to learn to inhibit misuse and move with greater ease/mobility and to provide Thomas with the opportunity to integrate this movement throughout his day. It was an intensive period of care; it was constant and exhausting to continuously engage/motivate Thomas into purposeful movement. But I never lost sight of the tremendous opportunity that was at hand or for the respect and sensitivity towards Thomas’ ability to learn something new, particularly with the added confusion and discomfort of surgery.

As the summer progressed, we plugged away. Thomas’ casts were removed and we spent most of August in northern California where he worked intensely with skilled practitioners familiar with the surgery who helped Thomas move past the guarding and into more differentiated movement.

The changes that took place in the past 6 months are significant – the most obvious is that Thomas is on his feet which he enjoys and which calls on different skills and awareness. We never leave the house without the walker! Time and efforts continue to guide Thomas towards easier, more fluid movement and function; function that takes shape in everyday tasks like getting from here/there, stopping to engage in or follow Thomas’ interests, or just have meaningful conversations. We are guided with a simple goal; to empower Thomas to participate in his life with as much independence and allow him the time and focus he needs to participate with as much attention and intention. The rest is up to him…

Following our busy summer, Thomas started school at Sunnyview- a school dedicated to children with physical disabilities. Thomas really enjoys it - it’s warm, physically friendly and he is loved by staff. Integration has been slow, new situations are typically difficult for Thomas and he exhibits behaviours that are not purposeful or lend to cooperation. Familiarity continues to be exchanged on both sides and the school is very open to feedback. Most importantly, Thomas has a very caring and devoted teacher who is eager and interested to support his learning in all areas and we communicate extensively.

The single largest drawback to school is the excessive time Thomas spends in his wheelchair; not only does this affect his physical goals but it spreads to other areas of development as well. There is a direct relationship to engaging the brain in movement/awareness and Thomas’ system downgrades dramatically when is not participating in either. Because there is not a 1:1 care-giver ratio to support his mobility and because academics/transportation are primarily sedentary, we desperately try to provide for the lack of movement outside of school. Thomas is never in his wheelchair at home, his transportation is self-directed as much as possible and he takes part in bi-weekly 4 day intensive blocks dedicated to movement therapy. The school administration, in appreciation for the learning Thomas does at home, granted him a later/quicker bus ride in order to participate in his morning routine and circumvent a 7:20am pickup/90 minute ride with other children.

School remains a big priority and paramount to Thomas’ learning (just like other children) so striking the right balance is critical and his participation continues to be monitored closely.

My training with Anat Baniel carried thru 2010 and I will complete my basic practitioner segment in May of this year. Following graduation is an intermediate children’s mastery which specializes in working with the special needs population – I have been eagerly waiting for this and it will elevate me to work more intently with Thomas and possibly other children. Anat’s work and training has enlightened me in many ways to understand and appreciate the degree of Thomas’ neurological issues and how to empower him to overcome not just physical constraints but emotional/social and intellectual limitations as well. It is by far, the most empowering use of my time which I channel directly towards Thomas’ development and care.

It was an incredibly busy and full year and as I wrap up my final thoughts/recollections of 2010, I am well into planning 2011. My first order of business is hosting a very special 7th birthday party for Thomas, which takes place today! Looking back on his special day, I could have never predicted how our lives would change or the extraordinary childhood Thomas would lead. I do know is that I will continue to be guided by an unwavering commitment to honour Thomas’ life with dignity and learning that will serve him for the rest of his life.

I would like to extend my thanks to the many generous people who provided the financial resources to support an extremely ambitious and eventful year. A lengthy recognition list is posted on Thomas’ website (please see www.hopeforthomas.com) which includes hundreds of individuals and businesses who collectively contributed towards Thomas’ goals, including those who gave generously of their time and talents. I would also like to acknowledge the team of dedicated professionals who worked passionately with Thomas to help him overcome a difficult transition following surgery; Judith Dack, Cheryl Eichner and Marcy Lindheimer, who collectively brought relief and clarity to Thomas and created more freedom to move.

I look forward to keeping you posted on our plans for 2011, as well I am committed to creating a new video to chronicle the next chapter of Thomas’ journey (for those who have not viewed the earlier years please see video at left sidebar).

Thank you again for your continued interest and support of Thomas.
I wish you and your families the very best in 2011.
Linda

PS If you would like to "chip in" towards Thomas' goals this year, and/or have aeroplan miles you are able to spare towards Thomas' efforts, please see links at side bar for direction.