Nivedita's Blogs

Getting in touch with the feelings

During one of the assessments by a renowned special educator, when my daughter was reluctant to cooperate, the lady promised her to give her Coke after the work she does. The session went off pretty well and we were about to leave when my daughter said, “Coke”. The lady prepared orange squash and offered it to her. My daughter did not have it. Was she expected to have it because she could not express her disappointment in words? We were of course not paying much attention to this and were rather worried about the assessment results. But I did feel uncomfortable.

Though she could utter words to express her basic needs and to answer questions she understood, she could not express a lot of what she wanted. Making funny noises and moving up and down when excited did not encourage other children in the park to interact with her. The children of our friends reached out and made the effort to understand her ways.They called her on their birthdays and never ever made us feel obliged! We felt blessed and very grateful to these families, and still are!

I was focussed in the present and geared up to make the effort on daily basis. Once in a prayer gathering I was asked what I have planned for her future. I was confused and scared! I do not remember my answer, probably because I had no long term plans yet. Sitting on the steps of the temple, I just asked Lord to show me the way to the future and I would create the road. I don’t think I knew then how I would create that path for her!

My daughter was able to follow simple direct instructions after understanding their meanings. But she did not understand WHY she had to do or not do certain things! She did not know HOW to ask a question. She could not figure out WHY she was uncomfortable and HOW we could help her. Just like in the case of an infant, the mother understands if her child is hungry or sleepy, I had to read the face of a five year old and try to understand her feelings and queries! This made me more protective.

I discovered that immediate family members could not guide me in taking all the decisions, as they themselves were emotionally drained. I could relate to a few elderly ladies who helped me to think using the mind instead of the heart! I learnt to leave her behind and go out to nurture my passions like singing and drama. Not only did this take the monotony away but also freshened my mind and soul.

Life was good in terms of satisfaction and contentment!

With love comes acceptance….

To own a personal computer in 1999 became a necessity for us. I wanted her to type all the words she could read and learn more. Once on her computer chair, she was keen to take dictation of words she liked and remained settled for long. We introduced her to interesting games which kept her fruitfully engaged without help. I noticed that she figured out ways and methods on the computer on her own which was quite surprising for us, back then.

Those days we did not have the camera in our mobile phones. I wish I could click a picture of grinning face of the guard near our park, seeing my daughter ride the bicycle independently. He had once remarked, “Isko nahi aayega” seeing father running behind his daughter everyday, for more than a month teaching her to balance the bicycle. This was the first time we understood that small success can actually mean big achievement!

I did not know how to swim but dared to train her, hence left her in the big pool with floaters on and continued giving instructions which she could not follow. The coach observed us but was reluctant to help. I had a chat with him, “Agar yeh aapka apna bachha hota aap kis tarah sikhatey?” He dived in and vanished in the pool… was probably looking for an answer. I had never seen a commitment like this one, for a child not your own! My daughter learnt how to float in deep water and was doing lengths with not so perfect strokes, but without stopping. I did not have enough words to thank the coach! Another hurdle crossed and we were ready for the next!

I was lucky to come across a very compassionate lady who took dance classes for young children. Once she met my daughter, she was not sure how to go about, but she was ready to experiment and learn a new method. Most importantly she accepted her and wanted to go that extra mile to help her. Gradually they bonded beautifully and my daughter learnt mudras, simple steps and yoga exercises! Ma’am included her proudly in the group of her children in a dance on Vasant Panchami. Her daughter played the role of a buddy….this was inclusion into NORMAL world twenty long years ago!

A young and passionate artist, straight out of Delhi college of art agreed to teach my daughter to hold the paint brush. I was not looking forward to great paintings but noticed the joy on her face while using colors, her ability to work with another individual and the calming environment that was created. Presence of this bubbly sweet girl in the house lifted our moods including my daughter’s. After every class her art teacher went home with pride and satisfaction!

I was convinced that all you need is love to accept and reach out…

Sooner we accept….smoother becomes the path!

Principal and class teacher of the school shared very politely with compassion, that they have bonded with my daugher and discovered her special abilities but are unable to cater to her needs. Hence she will not benefit in a NORMAL school set up. When I walked back through the same corridors looking at the same glass paintings….I felt sad, very sad. I hugged my daughter tight with the firm belief that she was not at fault for not fitting into the NORMAL world.

A few months passed sulking, brooding and lamenting….! Friends and relatives reached out with suggestions and advice, prayers and solutions. It was overwhelming for us! I did run to temples, churches and tried attending prayer meetings. I had the same question, “Hey Khuda hai Kahan re tu!”…like Aamir Khan expressed in the movie PK.

Many suggested that I get her admitted into a special school, where she will easily be accepted. I was confident that we will give her the exposure to a NORMAL environment where she will get the opportunities to behave and live like all of us! I will teach her to work hard to bridge the gap between her and me ! She will be a part of holidays and functions that we will attend. It did not look easy from any angle for sure! But I wanted to include her!

Mornings were difficult as I missed the routine of getting my daughter ready for school, packing her tiffin and filling her bottle. Seeing the neighborhood children go to school every morning made me anxious, will she get another chance? She missed the routine too and became more restless. I realized, work with the child cannot stop even for a day! I decided to be her tutor at home for reading, writing, painting, dancing. I was determined to expose her to various skills.

I was hopeful….I had faith in Almighty!

Amazing and confusing!!

My daughter was fascinated by words and letters at a very young age of one year and four months. She pointed at words and insisted that we read them, which she remembered at one glance. This was amazing and yet very confusing for us to relate to her unusual intelligence. We tried gathering knowledge by reading up the internet and came across “Hyperlexia”. This self diagnosis somewhat matched with our child’s present concerns. We realized that we are on the right track in terms of intervention.

Our wise and very competent speech therapist suggested that I observe her sessions and do the follow up exercises a few times at home, DAILY. Consistent and regular hard work for months without any immediate results only re-established the shloka, “Karmanyevadikaraste maa faleshu kadaachana…..”

In the play school she managed to stay for few hours but needed constant attention to sit and listen. I sent my help to assist the teachers in school, but she was not benefitting really. All we wanted was, to give her a NORMAL environment and felt grateful to the nursery school for accommodating her.

We encouraged her advanced reading ability, by adding new words and sentences to her vocabulary. Then one day she surprised us by calling me “MAA” during her speech session. I cried real loud and continuously. She was then 4 years old 1998.
Gradually, she could repeat words and read around 500 words. We dared to apply for admission to a few NORMAL schools in Delhi. By God’s grace, she got admission into one. We were thrilled and celebrated our good luck. School promised to try to help her and review her progress after six months. We were super excited to click her pictures in her school uniform, fancy dress and on Independence Day! We felt like NORMAL parents!

After 5 months I started losing my sleep with the fear “what if school refuses to keep her beyond 6 months?” I prayed very hard every day. I remember my nervousness and shaky legs as I walked through the corridors to meet the principal of the school, to know the review!

“She will never be normal like you and me”

The words echoed again and again for days and months….till the reality settled in my mind. But did I for once think that I will stop trying….trying to teach her to learn just like the others did? Will I stop providing her with the opportunities and platforms for learning various skills? Will I give up on trying to make her as NORMAL as possible?…No.

This was March1997, when PDD (Pervasive Developmental Disorder) was not well known or heard of. People heard of Autism, specially classical cases, which my daughter did not fit in. Hence there was hope in a corner of my mind with traces of denial which justified that she is not really autistic!!! She may become NORMAL one day!

More doctors we went to, more confused we were….this is when I met a wise speech and language therapist, who gave a valuable tip: “look for the child’s areas of concern and start working hard on them on daily basis”.
That day my focus shifted….I organized the day in such a way that I could work on various areas like speech, gross motor skills, social skills….EVERYDAY.

At the same time I felt the need to meet up friends and spend time with them and have fun in my own way. This raised a few eyebrows….how can she smile so much? She goes to the gym, comes to parties, acts in a play….does she even realize her misfortune???? Little did they know, that I was mastering the skill in me to do my best for my child. I did not feel guilty….I felt contented😄