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I will not give up till I am done – Mousumi Gogoi
The mother-daughter duo that proves that dreams come true with dedication, patience and hard work.
When people come to know that they are going to be parents, their life begins to shape around new dreams, hopes and aspirations. Imagine the condition of parents when they are told that their child is autistic. Hard to fathom! The world suddenly seems to crumble down and it seems almost impossible for them to come to terms with the fact. Some take more time, some accept soon that what lies ahead is a long journey that requires patience, sacrifice and, sidelining a lot of things one dreams of, one hopes for.
Here’s the story of Mousumi, evolving from a pampered daughter to an independent student to a mother whose daughter Pakhi was diagnosed with autism when she was in play school. Mousumi knew that life ahead would be tough but she chose to be tougher and face the challenges with the right mindset, positive approach and inner strength. In this journey, she did lose a lot, but what she attained is far more precious than these losses. Today Pakhi is 18 and is studying in one of the most reputed colleges of the country. She has a bright career to look forward to.
Mousumi chose not to give up and stood by; she did everything in her capacity and beyond to give Pakhi a childhood she always wanted to.
A Reiki practitioner and a Theta healer, Mousumi has come a long way, carving a path not just for Pakhi but also for many others through her experiences and advices.
Read her story in her words.
I am Mousumi Gogoi from Assam, currently living in Bengaluru with my daughter Pakhi. After helping us settle down in this new city, my husband Shantanu has moved back to Gurgaon where we were staying earlier for his work.
Pakhi
My daughter Pakhi is 18 now. She is a girl with special needs. She has high functioning autism. She was diagnosed with it when she was in the play school. For the sake of her education and overall development, we decided to sell our flat in Ghaziabad and shift to Gurgaon as there were no good schools with an integrated set-up in that area.
It was a leap of faith for us. She studied in Pallavanjali till 8th and then shifted to The Shri Ram School, Moulsari. These two schools contributed tremendously in making Pakhi what she is now: confident, cheerful and always positive.
Pakhi is the light of our lives. Her disability has never stopped her from following what she believes in. She is passionate about movies and dreams to make one someday.
She manifested these thoughts and to our utter surprise, she cleared the test and got admission in Srishti Manipal Institute of Art, Design and Technology, a prestigious college of India.
We again took a leap of faith and landed in Bengaluru to let our child chase her dreams. My husband moved back to Gurgaon after helping us settle town. Thereafter, began another challenge of adjusting in a new city. I realised the importance of learning the local dialect (Kannada) as I was facing difficulties in interacting with auto drivers, vegetable vendors, shop-keepers and delivery guys.
My day now revolves around taking Pakhi to college, picking her up after her classes, accompanying her to the multiple outdoor assignments that she gets.
It would be wrong if to say that the journey has been smooth. We have seen the worst times and together we have survived. I have lost many friends, only because their children don’t want to mingle with Pakhi and my child is not welcomed at their place.
Autism and Mindset of People
Autism is not a disease. It’s a developmental disorder that affects a small percentage of population. There are varying degrees of autism. Children with mild autism can become high achievers with proper guidance when they grow up. Those with more severe autism may need life-long support.
It’s heart breaking but people in Indian societies treat children with special needs differently. This is the main problem. The differently abled don’t want to be treated as different, they want to be treated as equals. They are equal and can perform to best of their abilities with little guidance and support. The problem lies in the mindset as there is very little awareness among people.
We don’t have many schools with well trained teachers and even the special teachers are not dedicated to their jobs. Pakhi went to a reputed school in Indirapuram, Ghaziabad (before moving to Gurgaon) but we had to take her out of it as the principal thought she was not fit for a school with “Normal Students.” We still live in a society where people consider neurodiverse kids as abnormal. I don’t want to change my child to be accepted by some ‘neurotypical’ people. A girl who doesn’t know how to lie, how to manipulate, who never gets jealous of anyone, always ready to help others; is a blessing. Who are we to challenge what God has already planned for her? All we can do is give her the love and support she needs to flourish.
Life with Pakhi
In Pakhi’s 18 years of academic life, I was her teacher for Music, Art, Design, Computer, Math, Science, French, Bakery and Confectionery (subject in 12th), Business Studies and what not. As she is learning, I am learning with her and this adds so much meaning to my life.
Pakhi has given purpose to my life. Right now, my priority is to make her independent and self-sufficient. In this process, I too have learnt many skills. I am no longer the person (shy, introvert) I was, 20 years ago. I have become more confident and patient and feel more capable.
Role of Family
Family plays an important role in nurturing a differently-abled child. Frankly speaking, my daughter doesn’t have a best friend. But fortunately, she has classmates who are very helpful and supportive. Like other kids, making friends is not easy for Pakhi. Although she tries to make friends, she doesn’t know how to keep them. Right now, I am her only friend and the best one.
It’s a double responsibility for me. She always looks up-to me and considers me as her idol. For her there’s nothing a mother cannot do. So, I am always trying to live up-to her expectations, trying everything to make her happy. How do I do it? Well, I too lose cool and get depressed at times. But God has been kind enough to give me a green thumb. Gardening has taught me patience.
In Gurgaon, I had created a terrace garden with all kinds of fruit trees, vegetables, flowers, oranges, mango, jujube, chikoo, custard apple, drumstick, pomegranate, water lilies, lotus, night jasmines, cherry and so on. You name it, I had it. I brought some of my plants to Bangalore, gifted a few to my friends and left some for my tenant.
Energy Healing
I am also into energy healing. I am a Third level Reiki practitioner and also a Theta healer. These healing modalities have helped me and Pakhi to live with a focused and balanced mind. Reiki helps in reducing stress and anxiety, increasing concentration and in overall wellbeing. Reiki also works on plants and animals. Theta healing is basically working with the divine. You go to Theta, a dream state without even dreaming and, work with the creator in areas where healing is needed.
I am grateful to these healing modalities.
Blessed to have Pakhi
I consider every moment spent with Pakhi as special and I can go on and on talking about them. I remember once she volunteered to donate her long hair for patients undergoing cancer therapy. She heard about it in a TV show and suggested she should do it too.
It’s a myth that children with autism cannot be sensitive. This is just one example of Pakhi’s compassionate side.
Another moment was when she did a live stage show on calendaring. She has this ability of telling what day it is if the date and year is given. This is God gifted and she has not learnt it by any training.
She also loves to make comic books on Bollywood movies. This is her favourite pastime. She has made five of them till now and is working on two more. That is another reason to be proud of as she is doing it independently without any training. She loves to travel just like me and we always look for our vacation trips.
Advice for Parents
1. Find out their strength and work on it
If we look back in history, we see famous personalities with ASD (Autism Spectrum Disorder) like Einstein, Anthony Hopkins, Tim Burton, Charles Darwin, Emily Dickinson, Sir Isaac Newton, Nikola Tesla, Leonardo da Vinci, Vincent van Gogh, Steven Spielberg and so on. But not everyone is gifted. Look for the child’s strength and the areas where they are good at or interested in. train them accordingly.
2. Take care of yourself
You need to take care of yourself first. If you don’t, you will not be able to take care of those for whom you are responsible. Also, teach your children about selfcare.
3. Accept and appreciate your child for who she/he is
Free yourself from thinking about the “what-ifs” and stop thinking what other people will say or think. Support the child in every possible way. Remind them that no matter what you will always be there for him/her.
4. Life skill and personal care
Life skills are important to make them functionally independent and to prepare them for future. Daily living skills like handling money, shopping, safety awareness, housekeeping, selfcare and social skills like travelling alone, communication skills and self-awareness
5. Distance yourself from negativity − people, situation and surroundings
Keep a safe distance from people who continuously judge you. If they are your relatives and you cannot avoid them, limit your time with them. You cannot afford to drain your precious energy.
6. Surround yourself with positivity
Be with people who encourage you and treat your child as one of their own. We are not looking for sympathy. Good people still exist and the world is a better place because of them. Be one if you cannot find one.
7. Never give up
God has chosen some of us specially to take care of his special children. We cannot give up. We will not.
8. Instill self esteem
It is important to instill self-esteem and self-worth in your child. Before expecting your child to accept their own selves, you should accept them the way they are.
I am often asked why I have wasted my education and skills sitting at home. People only see me cooking and doing household chores. They don’t see what I go through each day. I know what I am doing and how important it is for me and for my family. It is high time we understand our value and not get demotivated by what others have to say.
My priorities are clear and I am working hard each day to get there. The road ahead is not smooth but as someone has said: “God gives his toughest battles to His strongest warriors, I’ll not give up till I am done.”
