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Disability: It’s all in the Mind


While the whole house was going through this unbearable phase, we thought of meeting a parent for a change. Somebody who’d help us look at everything from a different perspective and somebody who’d understand our trauma and pain. I called a few friends and luckily one of them knew a family who had a 15 year old daughter with Down’s syndrome. We immediately called them and requested to meet. They obliged us and a meeting was fixed for the following day.

We reached their home at the appointed time. The mother received us without a smile and a few minutes later called out to her daughter.

In between her calling out the name of her daughter to her actually coming into the room, my heart was in my mouth. I had not seen a grown up girl with special needs ever before and I wanted her to be somebody I could want my daughter to turn into. After a few minutes, she emerged from another room. She was barely 4 feet with a flat face and a pot belly. Her speech was incomprehensible and all she wanted to do was pick up Aarshia (my daughter) and play with her. I remember my heart sinking. I did not want this. I did not want my daughter to be her.

This girl had a dual diagnosis of autism and Down’s syndrome and was very low functioning. Also, seeing the gloomy environment of the house where nobody was smiling, I made up my mind that I was not going ahead with the surgery. We fought while coming back from their house. My husband thought I was being unreasonable and there was no way to know if our daughter would turn out to be like her but I already had a glimpse into what my life could be and I did not want a house where everybody mourns.

I used to stay up at nights and wish for her to die. I wanted my beautiful daughter who I had wanted all my life to die because if she didn’t, then as doctors had predicted, we would never be happy. Every day was hell and every night was even worse.

My husband tried to convince me over the next few days but I did not budge. And then one morning when I was all alone with my daughter, this happened. After I gave her a bath, she started breathing weirdly. I patted her back but it didn’t stop. I panicked and called my husband, who asked me to get ready so we could go to the hospital. She was still not alright and was now crying. I hugged her and I remember both of us crying. I was constantly saying sorry. I carried her in my arms to the doctor who told us it was probably because of constipation and not because of the heart, but in that moment I knew what I had to do. I was wrong, if I could not see her suffer because of constipation, how I could see her dying! Which so far was something I thought would happen without affecting me much. Weird times make for weird expressions and weird thought processes!

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ParentEdge is a bi-monthly magazine for discerning Indian parents who would like to actively contribute to their children’s education, intellectual enrichment and stimulation. The magazine’s premise is that learning is a continuous process, and needs to happen both in and outside of school; thus parents have an important role to play in shaping their children’s interests and intellect.


10 thoughts on “Disability: It’s all in the Mind

  1. Ignatius Fernandez

    Deepa, thank you for sharing an eye-opening experience with us. I salute your courage and faith. As parents you did not give up, despite predictions to the contrary. Your story will certainly inspire others with similar problems. God bless you and your family.

    Reply
  2. sonika

    Depa it is really very inspiring. We have normal kids but one way or the other they r also special need children. Everybody needs love, care and attention only the difference is down syndrome child needs more love care and attention but in return they give us the same.

    Reply
  3. Rashmi kohli

    I m really proud of you who is able to convince your feeling and educating people for taking right decision at right time. Loved your article. I wish both of you and your daughter a wonderful and successful life ahead.All the best.

    Reply
  4. Rachna Gupta

    Deepa, this story is really painful n realistic too.its very easy to read it n say”’ I can understand n feel the pain but it’s not true. This pain can be felt by the person who go through it. It’s very difficult to show that on papers but u did it very well. That was the time when one have to be calm n cool so as to take right decision but being a mother its very difficult. But you proved it very bravely. I really appreciate you for your right decision at right time. Its a lesson for us too.

    Reply
  5. Ramya

    Hats off to your courage Deepa, for standing up for your child at the right time, and for candidly sharing your difficult moments.

    This is an inspiration for all parents

    Reply
  6. Swati

    Truly an inspiring story in more than one ways! In a society where normal girl child is considered as a burden you and your husband are raising a special needs girl! So proud of you Deepa! All the best for her future endeavours!

    Reply
  7. Richa

    Most of our beliefs are generalisations about our past, based on our interpretations of painful and pleasurable experiences. The moment we begin to honestly question our beliefs and the experiences, we open the door to replacing our old, disempowering beliefs with new beliefs. I am so glad Deepa, you changed your beliefs because that itself will empower you to accomplish virtually anything, including those things other people are certain are impossible. All the best !

    Reply
  8. Subir Roy

    I salute you and your family for your courageous decision. She will make you proud one day. Only a few days back i met your husband and found him to be a strong man of courage with a golden heart. My best wishes are with.

    Reply

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