As I write this I am on my second trip to the US with Yatish, thought it would be a great idea to compare both trips and give you an account. Meanwhile I will tell you about the physical therapy sessions. After we completed all the scans and tests we were referred for the physical therapy evaluations and we were to meet the physical therapist (as they call in US) Nicole Polizzi.
Physical therapy is the cornerstone of the treatment programme for cerebral palsy. The aim is to help a child’s mobility to develop and to carry out and teach exercises designed to avoid contractures, bone deformity and unwanted movement. In general, it enables to obtain maximum physical function. There are three aspects to it viz: Stretching, strengthening and positioning.
http://www.cerebralpalsysource.com/Treatment_and_Therapy/therapy_cp/index.html
We had started physiotherapy for Yatish when he was two months old and come to think of it Yatish has had physiotherapy for most of his life, so much so that Yatish is quite well versed with his deltoids and trapeziums and knows exactly where they are located. Over this period of time, Yatish has had numerous physiotherapists and all kinds.
To this day, I am not very sure, what should be the goal of these sessions, even though I would have spent over 2000 man hours on physiotherapy and not to mention the commute time to get to these places, in terms of larger goals like sitting, standing or walking we have not reached there yet and we are not sure if we will ever. Yes, he does not have any contractures and bone deformity, but apart from that we still have a long way to go.
According to my experience, I feel the therapists in US give priority to managing the condition than achieving the physical goals. So they rely heavily on gadgetry to make life easier for the person and the carers, while in India, gadgets are a thing of luxury. Even for a simple thing like wheelchair, we do not have safe roads, so to ask for footpaths for wheelchairs is simply too much and most of the buildings do not have ramps, some of them do not have lifts. This is true of even homes. So what is the point in paying through your nose, getting a wheelchair which will cost you anywhere between 50,000 to 3, 00,000 INR and not being able to use it outside your home? Life for the disabled in India is pitiable, because even for normal mortals, life is full of struggles to get around; the disabled of course stand no chance. So they end up missing on every simple experience like going to the supermarket, getting around in public transport, going to a movie or just going for a stroll. Even though there has been some change, it needs a strong political will and huge community effort in terms of awareness and empathy for anything to happen in this direction.
After staying for 9 months now in Australia, I have been able to take Yatish to every possible place imaginable, to the 20-20 cricket match at MCG, Footy match at Etihad stadium, the beach, sightseeing to numerous places, all the possible malls, in the trams, trains and to the disabled friendly playground, even for strawberry picking effortlessly, not to mention his school trips to the farm, supermarkets, post office. I am fortunate that I am able to give all these experiences to my son but I dread to think, how our disabled in India are living with impoverished experiences and we are doing nothing substantial towards this.
We took a few physical therapy sessions at the Boston Children's Hospital and also got a home programme. The therapist suggested that we get a wheelchair, a trunk support brace, both of which would cost us upward of 5000$. So we let that wait.
http://www.convaid.com/fixed-tilt-positioning-wheelchairs-cruiser-cruiser-wheelchairs-style-classic-c-1_2_3-l-en.html
http://www.ottobock.com/cps/rde/xchg/ob_com_en
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