6 degrees of Separation...

When my brother and his wife invited me to spend this summer with them, I was little apprehensive, since my last journey to US with Yatish was not so pleasant and this time it was going to be even longer about 25 hours. However I did really want to meet my brother and his wife and my cute little nieces. This time I applied for my visa from Melbourne and all the forms were completed online, got an appointment for the interview. The interview was a breeze and got my visa stamped in two days flat. My brother told me that we could visit Canada, and see the magnificent Niagara Falls. My last visit was in winter and during that time of the year it is completely frozen. So now I had to apply for my Canadian visa. I only had about 12 days before my journey and the Canadian visa office is located in Sydney. The visa process takes between 2-10 days. I sent all the papers and it was just 4 days to my journey date and there was no sign of my visa. So we mailed them asking them the status and I was relieved as they promptly replied saying it was already in the post. I called the airlines toll number was pleasantly greeted by an Indian sitting in his Pune office. He seemed equally thrilled and told me it is always nice to speak to somebody in the same accent and not have to put on one. He booked all the seats nearer to entrance and I also placed a request for assistance for Yatish.


The journey date arrived and we checked in. I could take Yatish’s stroller right up to the aircraft entrance and inside the aircraft they have an aisle chair, which is used to transfer wheelchair bound passengers on to their seats, which meant that I did not have to carry Yatish. Our first leg of journey was between Melbourne and Sydney, which was about 45 minutes. We were pleasantly surprised, when we were upgraded to business class. Yatish was very thrilled to have his own TV and could watch his favourite cartoons not to mention the comfortable seats. Our next leg of the journey was between Sydney and San Francisco. We had about 2 hrs wait time before our next flight and by the time we freshened up and grabbed a bite, we were off again. The airline staff helped me with Yatish and we were comfortably seated, but Yatish was not happy.

He told me that we should go to the front of the aircraft as he had just passed the business class, and thought the seats there were better and they had their own TV. It is very difficult to explain to a nine year old that you can’t expect to be lucky every time to be upgraded to business class, when you have bought economy class tickets. So every time a flight attendant passed us, he would nudge me to tell her to move us to business class. It took a lot of convincing and cajoling before he reluctantly made peace with his surroundings. I wanted to put my cabin luggage in the overhead compartment, but since I am vertically challenged, I could not reach it and was looking for the cabin crew for help. Just then the person sitting next to me volunteered to help me put the luggage. I thanked him and suddenly he flashed a card which said that his name was Jonathan and he was deaf. He was a very sensitive guy, seeing that I was trying to balance both the lunch plates on my lap board, as I was afraid Yatish would knock off the plate, if I placed on his, Jon took my plate and held it for me till I finished feeding him.

Jon wanted to read and wanted to put on the overhead reading light, but noticed that light was falling on to Yatish’s face and since he could not fix it himself , he called the cabin crew to fix it. He tried to explain what he wanted in sign language, but they could not get it, no matter how hard he tried. Finally he asked for a piece of paper and wrote on it what he wanted. They fixed it and also came back with a written apology for being insensitive. This started a flurry of written exchanges between Jon and me. He wanted to know more about Yatish. I also noticed that he was very good in solving sudoko puzzles. So Yatish ended up showing off his math skills too. After every movie, they would display the aircraft position and Jon would tell Yatish in his sign language how far we have reached and how much more distance was there to be covered. They had perfect understanding. Jon would look over Yatish every time I had to visit toilets.

It is especially difficult for kids on a long flight. So I took Yatish up and down the aisle couple of times, so he could stretch. There were buttons on the arm rest of our seats, one for the lights and the other to call the attendant and Yatish was so bored that he started playing with the buttons. I noticed that every 5 mins an attendant was coming and checking on us and also getting a little testy. I was half asleep and not really sure what was happening. When I realised, I told the attendant to ignore any request for attendance from our seat as there was no way I could stop Yatish, bored as he was with the whole flight experience.

Finally we reached San Francisco and bade goodbye to Jon, before leaving he wrote on a piece of paper”you are an amazing mom and your son is lucky to have you” and I wrote back “Jon you are a kind soul, thanks for all the help”. I guess this is what they mean by “6 degrees of separation”.

When I reached SF, we had to do the immigration checks, but because of Yatish we did not have to stand in the long queue and it was all done very quickly without any hassles. I wanted to call my brother, but I had no 5 cent coins, so went and bought a coffee, so I could get some change, then went around looking for a coin phone booth. After locating one no matter how much I tried I could not get through and had already lost 10 cents. Finally my antichrometophobia took over me and I decided to give up the whole idea of calling him. In this whole process, I narrowly missed, missing my flight. The flight from SF to Boston is about 5 hrs, but it seemed the longest. It is a domestic flight and you are not served food free and you have to buy it. You can buy food only if you have a debit card, which I did not have. Thankfully I had carried some food for Yatish, just in case and so did not have to go hungry...We reached Boston by night and the airline staff helped me with the luggage and my brother was there to receive me...

Going through the Stretch.....

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.

http://www.healthgrades.com/health-professionals-directory/nicole-polizzi-pt-9e408c37

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