Sunday, 29 March 2015

Tackling Challenges Headon

“Sometimes even the greatest joys bring challenge, and children with special needs inspire a very, very special love” said Sarah Palin who reflects my own feelings. Farheena is a special needs child, and the kind of love she evokes in people is really something very special.
I agree that being a mother to a child with special needs can be challenging, because you fear for the safety of your child, falling short of taking proper care of them, not being able to understand your own child and also whether you are making the right choices or not. You feel more responsible for your child with special needs. Yet, when you connect with special needs people, you will know how much of optimism they can bring into your life. They are in fact special, because they are not corrupted by the vices of human kind. You can always #lookup to them for motivation and inspiration.
Farheena, with her own unique style and observations has been a great motivation for people around her, especially to her mom who was inspired to fight cancer more vehemently to be there for her baby girl. The way she continued achieving her goals, one step at a time is inspiring for more able people to do more.
Her struggle to get on her feet was no less. Initially she had trouble walking, and when she started walking, she developed crouch gait. She had to undergo triple fusion surgery on both her feet to start walking again. It was amazing to note how co-operative and understanding she was about the whole situation. She had complete trust in her doctor, Dr. Gautam Kodikal who did a wonderful job her feet to get her back walking without crouch gait.
Even though we do take speech for granted, it is a struggle for Farheena to communicate her thoughts. But she developed a language her family and friends can follow with the words she could pronounce easily. Just because she did not have speech ability, she did not give up on communication.
Her view of the world is not complicated at all, it is simple and so clear. She may not be touched with a genius wand, but at the same time she is also saved from evils of the world. She doesn’t like to hurt anyone. When everyone lets down a person, Farheena will be there supporting and showing her love for him/her. She is the first person to know when someone is sad and needs comfort.
She knows when to put down her feet and when to draw lines. With the life skills she has, she leads a dignified life, managing her needs by herself to a great extent. She lives her life with great plans for everyone around her. She wants to buy a house with swimming pool, a red car and adopt a baby.
Our society does not allow special needs people to make many choices. We pick the food they eat, the dress they wear, the school they go to etc. But Farheena is lucky that she gets to make her choices on many levels. She also had a choice of either to be happy or not, and she choose to be happy with whatever she has in her life. She takes pride in everything she does. We may still be pondering over whether the glass is half full or half empty, when Farheena with her simple way of looking at life would say, let us be happy that there is a glass without bothering whether it is empty or full. She has great optimism about life, about love, about the world and its future and she doesn’t hesitate for a moment to spread it around.

  Like Farheena, her art is simple and uncomplicated. 

Enjoying a Holiday with Paints

Saturday, 28 March 2015

A Step towards Freedom

Farheena was born and lived in Bangalore till she turned 7. Some life changes saw to it that she had to shift to Byndoor, a tiny coastal village with her brother and mother to live in home that belonged to her father’s family. Initially, the 7 year old child loved the fresh fish she could eat every day, visit to the beach, pet chickens and parties her mom threw for children. The biggest drawback was her social life. People had no idea that she was just a person like them with some challenges. They could not just treat her normal, either she was shown over sympathy or neglected completely – both equally pushing her away from people. Slowly she started disconnecting with people and living in a bubble of her own only communicating with immediate family members.
She went to a special school, unfortunately it did not have specific training program for her. Finally it was time to take a bold decision. Her mother decided to shift her to back to Bangalore and send her to a special school which would pay attention to her specific needs. It was a bold step to move away from a own home to a rented place #ToStartANewLife.
Back in Bangalore, Farheena started going to FAME India special school, and showed tremendous improvement. She learnt to socialize, communicate and became an interactive once again. She was given vocational training and life skills in the school which enabled her to gain confidence in social situations. More than anything else, she had great trust in the people who managed school and followed their advice even at home.
Participating in Cultural Day Activity - Pratibha
Slowly she started using microwave oven to heat up things, attend to every one of her bathroom needs, bathe herself with little help from her mom, and clear her own bed along with many other activities. Soon she was confident enough to be at home without her mom, but still was not confident enough to be alone. She could manage herself attending to all her needs if her brother or cousin was there at home with her.
Enjoying in Park with Cousin Manal
All the changed happened in a short period of just 2 years. It is unbelievable. She was a changed child once taken out from a social environment that curtailed her emotional growth. Her social skills also improved and she started communicating with some people who understood her. It is really sad that she had to spend nearly 10 years in a place that pushed her into social seclusion and repulsion as well.
With two years training in FAME India, Farheena shifted to YST vocational center where she is a special employee today with a tiny income of her own. One bold step taken 3 years ago brought about a great change in Farheena’s life.

A Bond Crossing Boundaries

Pepper waking up Farheena
Farheena doesn’t write much on her blog because she cannot write anything beyond basic conversation she has on facebook. She expresses herself through her art and her painting. She is a special needs child with speech and learning challenges. The problem with our society is that they cannot communicate with special needs people. Pointing out at our society may sound offensive to some people, but this is the bitter truth I have discovered with my own life experience.
Farheena has a great bonding with one of my online breast cancer survivor friend – Paula Gerding who knew how to talk to her. They used to chat through webcam and have fun together. Paula would greet Farheena with a ‘Hi’ when she came on and ‘Bye’ when she was logging off. Being unable to call her by name Paula, Farheena addressed her as ‘hi, bye aunty’ and we all loved that name.
Through months both my children grew very fond of Paula and her antics, so much that they wanted to meet her someday. It became a big agenda for us to visit Paula and meet many other friends we had met online in US. I was a part of cancer support group called ladybirds and we women had strong bonding among us.  Somehow, what started as a cancer support went way beyond that when Paula connected with Farheena.
Finally we decided to visit Paula and spend some time with her in USA. None of us had ever travelled outside India and we hadn’t been around much in India either. When we connected with Paula, we were living in a tiny home in coastal village known as Byndoor. We had to get our passports done, visa arranged and off course manage the ticket expenses. The bond between Paula and Farheena somehow encouraged me enough to go about the daunting task without giving up.
Finally the day came when we had to leave for USA. We were so excited when we got into the train and travelled to Mumbai. From there we landed in Dubai airport to change planes and then NYC. From there we were to go to Tampa where Paula would receive us.
Farheena couldn’t tolerate the long flight and started throwing up immediately. She was completely exhausted when we reached Tampa and had nothing for nearly 14 hours at stretch. But once she met her ‘Hi Bye’ aunty, everything looked fine. We were worried about Farheena fear of dogs, because Paula had 3 dogs and 3 cats. Amazingly, it was Farheena who bonded with the dogs more than her mom or her brother. Also she started socializing with everyone in USA. We were shocked to see the change in her. Later I realized that the Americans had a better way of communicating with her when she was shopping or in a gathering. Farheena even went out to have sleepover with her friend Katie. It was amazing to see her enjoy her life like never before in USA with her friends.

Everything good has to come to end, and so did our trip to USA. With a heavy heart, I brought back Farheena to India, a decision I sometimes regret. Once again Farheena has tough time socializing here because people cannot look beyond her disability and treat her like any other person. I am glad that Farheena and Paula shared their life #together for 4 months because a recurrence took away Paula from us the next year. Her memory lives on and she is missed by everyone known to her. 
Pictures that bring smile on Farheena's face

Farheena with Lois and Paula, friends we lost to cancer