CONGRATULATIONS TO VINEET AND ALL OF US !!!

Vin's exams went on for a month and he was allowed to sit in a seperate room with his writer and an Invigilator from different schools.Most of the papers were good and easy and if I had to give those exams a second time ,I would have done a better job than I did some twentyfive years back!! LOL!

VINEET WITH HIS DADI AND HIS WRITER ON THE LAST DAY OF EXAMS

So days passed by and finally the last day of the exams came. It was also the last day the boys would meet each other . I had some momentos for these precious classmates of Vin and we took lots of fotos for the memories....

So on 15th May 2016, Friday, the much awaited Class 10 Board Results were published. Vineet and us were a nervous wreck since morning and so was his writer for the exams! So Vineet passed in the First Division with an average of 68 percent in a total of 10 papers!! YAY!!!

(A small note- his marks in the 'Arts' papers were better than the 'Science' ones.So he's an Arts student.)

But since the Arts stream was in a school located far from home, Vineet is currently studying in the Commerce stream which he abhors :/ Lets see where he's headed...

 Here's a link to my Fb post on his results -
https://www.facebook.com/photo.php?fbid=10209569446097751&set=a.1885774228829.110337.1375597855&type=3&theater

Vineet, Math and Academics

This is an important post which I had started drafting some time back. But I have to respect Vineet's wishes and not relate this topic entirely to his situation. So this is going to be a general topic mostly and I hope it helps you who are having similar situations, especially people in Eastern India.

So, as the story goes, Vineet was doing mediocre in his mainstream  school until middle school. Only when he went to high school did we realise that his handwriting had turned illegible and he was also having problems with arithmetic part of mathematics. I now understand that both are problems related to spina bifida. I was supposed to take him to "Manovikas Kendra "  in Kolkata for his evaluation, but unfortunately we couldn't do it for time constraints  (which is a bad excuse I guess...) :/

Fast forward to today. Vineet is going to appear for his class 10 board exams from Monday, and he has gotten himself a writer. Math is still a problem but he is concentrating on the algebra and has worked hard on arithmetic too. Geometry is still a problem though...

So here's a small request for you dear friends, kindly keep Vineet in your prayers as he goes for his board exams from Monday. It will go on for a month till 28th March. Please pray that he may get back his self confidence with the results later this year....

Thankyou so much!

Vineet needs a new mattress. But it can't be the 'normal' one.

For years now, Vineet has been using the normal mattress that we all mostly use - the coir one with thin foam lining. Maybe there are springs inside as well, I don't know. In India its the number one brand by the name- 'Kurl-on''. We have known this brand since our childhood and we know no other.

Vineet has a very severe type of scoliosis associated with his condition and I am told that it might be called ''LORDOSIS". I don't know whether surgery will be beneficial for him, and frankly, I dread it. Coz the Orthopaedic doctor at 'Christian Medical College and Hospital, Vellore' had told us that he could put in rods, but rehab would take around 6 months or so. Now Vin and me can't stick around at any hospital for a period of more than 7 days, 6 months??!!! NO NO NO!! is what we both said :P So we left it at that. Vineet has been very gracious enough to allow me to put up the fotos of his back at an earlier age in this blog. He said its okay since its supposed to help parents of other similar kids :) Isn't he an Angel :)

Top viewof his SB site
 at age 5

Side view at age 5

   

Now at 15 years of age , Vin suddenly lost all his baby fat and with all the changes of the body at 15 years old, suddenly I find his bone deformity at the SB site has risen up like a mountain! Its uncomfortable to the eyes and though Vin does not have much probs with it considering he uses his back as a support, I know what it means. It means all his organs inside are crushed including the lungs - which is Dangerous as his Uncle Dr. Nitesh says. Any kind of surgery or therapy correction, etc can now happen only after his Class 10 Board Exams next year in February-March. So as of now, I try not to make him sit at his wheelchair for long hours at a stretch at home. Can't help much at school though....but there's a rest cushion for his back. Its always been there....

So now Vin complains of a backache at times and we do a massage. But he's also tired of sleeping on his sides all the time and now wants to sleep on his back. So started our search on the internet for the most suitable mattress for his condition. First I asked in my various spina bifida groups on Facebook. I received a variety of answers but the most prominent of them was the usage of air mattresses by most respondants.Some were also using water-beds and normal foam mattresses. But I had seen 2 friends and family using air-mattresses and thought they worked fine. So I just walked into a pharmacy and got one - it was cheap so to say, Rupees Two Thousand for the brand Karma. I chose Karma because they had a free replacement policy-no questions asked.

Although Vinsy found the bed very comfortable, it didn't serve our purpose. Even after pumping air to its full volume, it was not high enough to fit-in his bony deformity. Now I had to search online. I searched a lot but couldn't get a satisfactory answer. All I could make out was that you didn't need to have a stiff mattress for backaches anymore. It was completely a wrong notion. Neither are you supposed to use a very soft one. Below are a few sites I stumbled upon searching for the right kind of mattress -
http://myergobed.com/best-mattress-for-scoliosis.php

https://www.novosbed.com/mattrepedia/how-to-find-the-best-mattress-for-scoliosis/

http://www.ebay.com/gds/Which-Mattress-Is-Best-for-Back-Pain-/10000000177628320/g.html

http://www.spine-health.com/wellness/sleep/selecting-best-mattress

https://www.resurgensspine.com/education/resources/frequently-asked-questions-faqs/78

http://www.spine-health.com/wellness/sleep/mattresses-back-conditions

So I deduced and gathered after all the searches of various kinds that there is this mattress called "My Ergo Bed' which they claim is very good for scoliosis. Then there's this 'Memory Foam Mattress' which is the best type that has been developed by NASA scientists. I think this post will be way too long to say more about it, so I am posting a link about it.
http://www.bedinabox.com/history-of-memory-foam-mattresses.php


Now just like you, I too was getting confused between the My Ergo Bed and the Memory Foam Mattress.But blogs and forums like these helped me make a decision -

http://scoliosisnutty.blogspot.in/2007/12/scoliosis-and-memory-foam-mattresses.html
http://scoliosisscoliosisscoliosis.blogspot.in/2010/10/best-mattress-for-those-with-scoliosis.html
http://www.scoliosis.org/forum/showthread.php?1027-Get-a-new-bed

(This is why I blog- we help each other :)

Secondly, I doubt if 'My Ergo Bed' was delivering to India coz it had to be custom made.
Third was the price factor. I found that it was exorbitantly priced.

And then as usual, my dear God helped me :) One day as I was returning home from work, there was a billboard near Vin's school saying - The number One International mattress company was here! In Asansol! A small town in West bengal India! - ECLIPSE. I googled at home and sure enough, they had the Visco Memory foam Mattress! Below is the link to their official website -
http://www.eclipsemattress.in/mattressingredients.html

When we went to visit the store, we had no idea that the memory foam mattresses were so expensive! There were so many varieties, for a moment we got puzzled. Then we tried on a few samples and decided on this one- The 'Ortho Visco' memory foam mattress. We were told it would cost us around Rupees Thirtyfour Thousand for the size of Vin's bed! okay.....hmmm....okay.....so we'll take it. Maybe we 'll  have less pizzas ;) .Papa can sleep next to Vin on it as he's got a slight back prob as well ...
I wished they had a trial period as well....

So the order has been given and we should receive it within a few days. Do please check in the Comments section for my reviews on the mattress when it will have arrived, as also after using it for a month or so.
Wow, this post got lengthier than I thought! Thankyou All for going through and sharing our journey with Vineet - our very special child :)


(P. S.  Please leave your valued comments and suggestions in the comments section, I love going through them  :)

Standing Power Wheelchair

In seated Position

In standing Position

A standing wheelchair is the dream of most paraplegics I could say. And ever since I showed it to Vineet on youtube he had been eager to experience it. For him , as he said, it would be the first time he would stand on his own.

In my post about his power wheelchair I had mentioned that our Surgico-pharma shop had conveyed that the standing power wheelchair would be available for demo soon. So on 11th July 2015 , we visited the shop and indeed, there it was! We were as excited as Vineet to try it. Maybe a little apprehensive too, thinking what if the knee support wasn't strong enough to hold him? Or what if the knee support was too tight on him and he wouldn't know if the pressure was crushing him? Nevertheless, Vineet sat on the wheelchair and slowly he began to rise up from his seating position. And then it struck us all - The huge bony deformity of his 'Lordosis" wouldn't let him rest on his back on the back seat. So as much as my brave Vin tried, he kept falling in front. Daddy was very worried about the knees too....And our demo personnel decided that the model being an adult size did not help much either. So after taking a foto of Vin in it (which he wanted to put up on his FB page :) , we switched it back to the sitting position.

 Our dealer has assured us that he will be on the lookout for a 'Paediatric ' model for Vin. So we came back home a little  disheartened, but our motto in life being - "NEVER SAY DIE", we will still be looking into it. ...... Maybe we'll get ourselves a neat Paediatric model into which I shall get a cutout for the back part and get an elastic cover with a cushion. ..... Or maybe they'll make a model where you can rest forward and not backwards........ The options are endless and our hopes and dreams will lead us to them..... :)

Here is the link to the official video of the product from Ottobock - Its beautiful!
https://youtu.be/uGwHwPx3qsI



THANKS TO ALL WHO ARE GOING THROUGH OUR JOURNEY WITH VINEET !
God bless you! 

Vineet is Prefect in School !!!! YAY!!

I was pleasantly surprised and a bit unbelieving when Vineet told me he was going to be Prefect; as soon as he started his Class 10 classes.But then his brothers told me it was true! He was selected to be "Extra-Curricular" Captain of the School.Then came the Invitation to attend his Investiture Ceremony on 14th May 2015. We as parents were overwhelmed.
            Gratitude and Thankfulness are small words to describe our feelings for Vineet's school and all the teachers in here. They have been the wind beneath Vineet's wings ever since he joined in Kindergarten. Yes, it was an advantage at that point that his dad was one of the teachers, but we were sometimes apprehensive whether he being specially-challenged would be admitted. All we knew at that time, some 15 years ago was that children in wheelchairs don't attend normal school. They have special schools.Here in India there is no difference in treatment of an 'Orthopaedically challenged' person and a "mentally-challenged' person. So a deaf and dumb child goes to a Special school alongwith an Autistic child and a child with Cerebral Palsy. I wonder if Vineet's dad would not have been a teacher in this school whether he would have been admitted. But yes, these apprehensions of parents of other special kids have been taken care of now by our government. ALL kids irrespective of their challenges- physical or mental, have to be taken in by mainstream schools.

To read more on INCLUSIVE Education by UNICEF click here

It is heartening to see ramps all over the 2 Christian Brothers Schools here in our small town of Asansol. Vineet's struggles have paved the way for many more specially-challenged children in school who are younger to him and his story is inspiring to so many parents. So, THANKYOU ALL you loving and caring teachers, students, supervisors and of course, Mr N. D'souza, Vineet's beloved Principal. He never misses a chance to help Vineet fly....

           So below is the link to some of his fotos of the Investiture Ceremony. As you all can make out, he's very serious about his post ;)

Click here to see fotos of Vineet's Investiture Ceremony

Click here to see a video of Vineet taking oath

VINEET THE ROCKSTAR!!!! [SPECTRUM 2013]

28th September 2013. Saturday. 12 noon approx.
Vineet performed on his Octapad for the first time in front of approximately 200 or more people (mostly participants, teachers , parents, guests from the 5 Topmost schools of Asansol). The venue was his own school - St. Patrick's Higher Secondary School's Auditorium.

So as the story goes, Vin was supposed to take part in his Annual Talent show in school in August. I had in mind Justin Beiber's 'Baby' song for it and by pure chance, even got a video song of it where Justin sang the song only with a guitarist. It was the Best option and Vin started practising for it with the help of his Octapad Teacher (who's very kind enough to give him his classes at home once every week). At first Vin was a bit reluctant- he said there was not much time. Then we got news that the Talent show was only for kids upto Class 7. Then came the Half-yearly exams and we forgot all about it. Then after exams we came to know that the Annual Inter-school Fest of St. Patrick's School - ''SPECTRUM 2013'' was going to be held and Vin would perform the very same song. Vin was a bit nervous again, but his Sir gave him confidence that he would practice with him and it would be just fine. So they practised some more for 2-3 days and then his Sir had to leave for somewhere Outstation for an emergency, then our player (was supposed to be) conked out, and I was all worked up.I made Vin practise the last part with a 'roll-over' with the computer's help, but Vin would get worked up. I thought he wouldn't be able to perform. Then , as I believe , 'God Helps those who help themselves', things started falling in place. The night before the Programme it suddenly struck me that I had 'cut' the video from the point where Justin is playing the fool and laughing with his guitarist , at Vin's behest and had saved it in a format which my player was unable to read. And at 11.30 p.m. I tried out the original piece without cuts and it played perfectly well. So my player was perfectly alright. I beamed 'coz Vin's Sir would be coming early morning to help him practise last minute before he went on stage. By now Vin was already playing like a pro and I left for my work with a lighter heart :)

When Vin's part came, I gave the 'cut' CD to the person in charge of the music and during our short conversation , I think I confused the poor fellow. He stopped the CD seconds before it ended. So Vin could not do the roll-over. But inspite of it, the performance was great and everyone cheered for him. He even got a 'Participant' token! :)

He was Vineet, the Rockstar that day!!!

Click here to see the video of Vin's performance

Vineet's School Sports and Class Drill on 8th December 2012

So finally on 8th December ,the much-awaited (by Vin n me) drill display took place at St. Patrick's School ,Asansol. I always get the feeling that people don't understand what a kid on a wheelchair could be doing in a sports event. But let me tell you that people on wheelchair are very very attached to sports of any kind.Just because they can't take part in them normally (apart from those who go the athletic way),it doesn't mean that their enthusiasm is any less :) Like my Vin- very attached to sports , whether watching it on T.V. or on the fields. He likes to watch the school Tournaments, be it Cricket or football or basketball, loves cheering his school's teams. He plays cricket with his brothers and friends, bounces the basketball, and today,yes Just Today, he learnt to wind  the Top with the help of his cousin brother Vivek who's only 8 years old. That too in 4 different ways!!! aaah! to see his widest toothy grin was a treat!! :))) So what I was saying was, Vin loves to dance. And if you observe him minutely, you will realise what a fine dancer he would have been with his legs.
      The second aspect of this topic is his school - I have no words to express my gratitude to the teachers,supervisors and especially the Principal, Ms Seema Paul. I hold them in great esteem and I am sure that later in life Vineet will realise the greatness of their support to him.
          Vin had confided in me that he always wanted to take part in a dance programme,like maybe on a stage thing, and I always consoled him saying, 'Maybe, maybe, some day...." And this was That day- well, not on stage, but on the fields and it was almost the same thing, coz here was Vin - DANCING, that too in those moves he Loved doing :) God is good! And HE loves Vineet! :)
                 Just 2 days before the Sports Event, Vin fell sick with fever due to cold. And I thought 'Oh no!" this can't be happening.But I made him stay back at home and rest, and he was better the day before. Which is why he couldn't do the Final rehearsals. But I was happy to see him, Happy.I myself applied his face paint and his class friends applied hair gel for him. It was a great day! :)

Vineet and friends before the Drill

Click here to see his Amazing Drill-Dance on youtube. The link to the fotos are not yet ready, so will add them later..

Well here's the link to the fotos - http://www.flickr.com/photos/57634602@N00/sets/72157632816250379/