Thomas, Adrienne and I are back from NYC - Thomas had a very worthwhile 8 day block with Marcy Lindheimer, a trainer in the Anat Baniel Method with over 25 years experience...
During his 15 lessons, Marcy was able to reduce Thomas' involuntary movements - quite often, Thomas kicks and lurches, sometimes grabs and hits (not my proudest moments!) because he has difficulty self-regulating; part behaviour/mostly CP. As Marcy explained, the brain uses a much larger portion to inhibit movement and Thomas' over stimulation is related to that function - or lack thereof. She also expressed concerned of the danger this poses - because Thomas is so oblivious/fearless, it is an huge safety issue. Regardless, she would have no part of that, "there is no point is teaching Thomas to learn how to move with that running interference" and put discipline at the top of her list and successfully got Thomas to quiet his legs, after frequent stops. Marcy also introduced choices - i.e. if you chose that, then this happens, which by/large is still difficult for Thomas to comprehend and respond to but would absolutely add value and intelligence in the long run. We are now using Thomas' favourite treat - gum, as a reward for paying attention during lessons. He cannot chew gum any other time...
Marcy, who has a background in voice training, also coached Thomas' speech during his lessons and within a few days he was initiating 4-6 word statements and questions (as opposed to 1-2 word phrases). She corrected mispronunciation, using smiles to enforce "ee" sounds and fish lips to show the "ous" and animating the snake anytime the s sound was dropped from a word. And when communication didn't fit/make sense, Marcy would challenge Thomas and say "I don't understand", "what does that mean?" or "sorry, do you have a question?" This ended up being very motivating and effective and it was beautiful to see Thomas speak more clearly and at times, string up to 8 words together...
I was mostly encouraged to see an elevated quality of participation through Thomas' ability to follow and "keep it together" - which he often does not. He participated really well, many times asking for a Leap Frog alphabet bus which he played with for long periods of time, repeating and pushing letters we all talked about, often just keeping to himself. Not once did he throw a toy! Conversations at the table included a variety of topics aimed to engage him intellectually, illustrating and encouraging as many variations as possible. Marcy would argue "His brain is too good to waste!"
I could tell that by the 3rd day, there was a connection that forged, less discipline and Marcy now admitting how much she loved Thomas' personality! She assured me that we were on the right track, that Thomas needs to work with people who understand him and who will bring out the potential in him, and very complimentary of the work accomplished by our local practitioner Judith, who has been working diligently with Thomas for the past 8 months.
Not only was it a wonderful opportunity for Thomas to see someone as seasoned as Marcy (who exclusively teaches children with special needs - up to 12 per day), but I really respected how she intuitively perceived the road blocks to Thomas' learning and very patiently worked through them insisting on Thomas' cooperation which he did. It was this that allowed her to raise the bar and inspire his learning, which is what this work is all about; to learn how to learn -something kids with CP struggle with and exactly what I witnessed. I admitted that I was impressed (adding that I don't impress very easily) and was told that this is what brain plasticity was all about - making incremental changes. Throughout the days, Marcy would reiterate that Thomas is a learner - a sponge, and that it is killing him not to speak so to keep forging ahead with an elevated agenda particularly one that includes speech prompting...
In terms of muscle tone, there was definitely a reduction - I am learning to feel that just by holding him. One of the markers I also use is to remove Thomas' orthotic sandals while I push him in his stroller and watch whether his feet will sit flat on the rest (as opposed to pointing upward in the air) and most time they did. I was again encouraged to consult with a team of orthopedic surgeons in New Jersey - Drs. Nuzzo and Jordan who are experts in percutaneous surgery - a very specialized procedure whereby pin hole incisions - almost a feathering technique, are applied to the myofascia to allow lengthening of the muscles. If Thomas is a candidate, this would help alleviate the rigidity in his ankles and give greater range of motion and create greater possibility for standing, stepping and ultimately walking. Anat had recommended this to me last fall and while it has been on my radar, I have now contacted their office for an assessment. A huge undertaking should we proceed, with intensive post-op treatment to help Thomas adjust and allow optimal function. Of course both would require further travel and be very costly - still nonetheless promising...
So, all in all a very successful trip! I am home for another week and half, we will squeeze in a 7 day block of lessons with Judith while Thomas' swimming lessons get underway at Bloorview, then I'm off to attend my 3rd training session in San Rafael. Always busy, always moving forward, always keeping an eye on the big picture...
Nicole, our house guest who has been assisting us since March is leaving next week - she is moving to Maryland to be with her boyfriend. Not only has she been an invaluable help, but she has become a part of our family who we will miss dearly. The 3 of us (Adrienne, Nicole and I - and to some extent Thomas) are now seeking someone to fill her shoes - a place to stay in exchange for an extra set of hands around the house (fingers crossed!)
Adrienne is also departing next week for Germany! She and 30 other choristers from the High Park Choirs will perform to a # of German and French audiences; when she returns, it'll be time to get ready for high school (gasp!). Thomas too will be gearing up for school, he will begin an afternoon program at Silvercreek, an integrated nursery program he has attended in the past. Its high-ratio staff includes on-site therapists within a well-equipped facility to promote learning and social activities while still allowing him to devote mornings to his continued movement lessons with Judith.
September will also see the return of two big annual fundraisers, the 3rd annual Hope for Thomas BBQ hosted by Thomas' dad's friends in Oakville and the annual Harshaw Street Sale, organized by a dedicated team of neighbours and attended by a large group of local Bloor West community. Please visit Thomas' website (www.hopeforthomas.com) for these and other events in support of Thomas.
I would like to take this opportunity to thank everyone for continuing to assist Thomas through their generous contributions and participation in events. You have made these and so many other opportunities possible - your support is invaluable!
I hope you are all busy enjoying the summer and look forward to keeping in touch through this blog and other means...
Linda
