On the move...

Lap 1 ----------8 minutes 37 seconds

Lap 2-----------4minutes 25 seconds

Lap 3-----------3 minutes 29 seconds

Lap 4----------3 minutes 54 seconds

This is no Olympic record, but the times Yatish took to complete the circuit at his school gym in his Gait walker. To imagine that Yatish would be able to reach this stage was unthinkable even a couple of years back. I could only dream about it.

Once we returned from Boston we were told by the doctors that Yatish may never be able to walk and seeing his condition then, we almost believed it. But somewhere deep within we kept our dreams alive. Yatish was about 3 years old and I was visiting my sister in Mumbai. Yatish did not have head control and his extension pattern made it difficult to carry him. My sister presented Yatish with his first stroller. We used it mostly at home and since it was light and compact we could use it often to give us some hands free time. This was his first taste of freedom. He could look at the world in a new way and was not lying down all the time. He used it till he was almost 6 years old. Subsequently we got him couple of more strollers, since they were meant for normal children; he found it extremely difficult to sit in them for long hours.

We made several attempts to get a proper wheelchair, considering that there were no local manufacturers we had to import from USA. The cost of the wheelchair would typically be in the range of 4000-5000 USD, however the problem was that it attracted 150% customs duty which was ridiculous. A specialised wheelchair would almost cost us 7 lakhs INR albeit without service support, which we could at the most use for 2-3 years. (I am told that this customs duty has now been removed, hurray!). We got a few chairs fabricated locally but they were not really road worthy.

Amidst all this he had a few surgeries to decrease his spasticity and the rehabilitation was aimed to get his mobility. While his spasticity definitely decreased, there was nothing to show in terms of mobility. We had even fixed up parallel bars at home in anticipation that, Yatish would start walking after the surgeries, but it was not to be.

All our attempts at making him mobile seemed futile, until we moved to Australia. Firstly he got a proper special needs stroller, which proved to be so liberating simply because we could move around with the knowledge that Yatish’s posture was not compromised. Yatish showed great interest in bikes, just to make him happy we got him a second hand bike. He loved to sit on it, even though he could not really ride it.  We came across a not for profit organisation which makes modified bikes for special children and they made a special bike for Yatish. His joy knew no bounds; he rode the bike as if he ad done so all his life.

 

 

 

 

 

There was a little boy in Yatish’s class who had started using electric wheelchair and Yatish was fascinated by it. One day when I had gone to his school to pick him up, he showed me the electric wheelchair and said he too wanted one. I did not know what to say to him, I was not sure if he was ready and moreover they cost a lot. As if God heard my dilemma, some kind soul donated an electric wheelchair.   From then on all his teachers took upon themselves to teach Yatish to manoeuvre the electric wheelchair and he did not disappoint. He is learning to negotiate the obstacles and continues to improve by the day.

 

Meanwhile he practises his walking in his gait walker and standing in his prone standing frame.

 

Charles Allen said  “When you say a situation or a person is hopeless, you are slamming the door in the face of God.”

 

Now we are recalibrating our goals for Yatish. We are exploring ways to make him independent and mobile. We have a very long way to go and the journey is arduous. But we will get there eventually.