My Brother Has Genetic Disorder, Can’t Handle People Staring

Children with genetic disorders are not aliens and staring at them because of the way they look and their actions (drooling, hand flapping, yelling), makes it difficult not only for them but also for their family.

At the age of 2, my brother Dhruv, now 16, was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Fragile-X, a genetic condition that causes cognitive impairments and learning disabilities. Unlike autism, this syndrome was relatively unheard of, and no one seemed to know how the mutation affected the person and in what way would it manifest. We had to figure it out as we went.

We were lucky that Dhruv was verbal and could express what he wanted and how he was feeling about a certain situation. He was a smart kid, but not smart enough for his age. Or smart like how he should have been.

Dhruv could not put the square block in the square peg, but he could con his way out of Occupational Therapy classes by asking for a water break, then a food break and then saying that he was tired. He has severe social anxiety, something that we only recognised recently, and would refuse to go out. When we forced him to do something, he would lash out and hurt us and then hurt himself by either biting his hand or forming a tight fist.

Mainstream schooling was not an option for him. He was too loud for the teachers, too abrasive for the students and too scary for other parents.

We then opted to put him in a school meant for children with special needs, but due to his anxiety, he did not feel comfortable there either.

This is not to say that special schools don’t work, it is a subjective choice and is also dependent on the type of activities the school undertakes.

At present, Dhruv does not go to any school. He enjoys using his ipad to watch videos which helps him learn English, as he is a strong audio- visual learner and he loves to paint with the help of my mother.

Yes, it’s a rough ride with him, but there are so many perks of being his only sister. Dhruv loves me unconditionally. He doesn’t see me as a being who has flaws and judges me for it. I am his sister and that is all. I am the person who will watch Barney with him and put Youtube for him. I am the person who will connect his iPad to the wifi. I am the person who will take selfies with him. I am the person who will take him for drives. I am his sister and he loves me only for that.

I am ever grateful to have a person in my life who will never judge me for my decisions.

Dhruv was 2 when he was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Fragile-X, a genetic condition that causes cognitive impairments and learning disabilities.

Sometimes I can’t believe that he is 16 years old. Friends my age have siblings his age, and the relationships they have with them is starkly different. There is no objective test to say one sibling bond is closer to another, but if there was I think Dhruv and I would have fared extremely well despite the fact that we like completely different things and have limited conversation topics.

I request everyone to read a little more about this disorder and the children it affects. Alongside, read about other genetic disorders such as Autism, Cerebral palsy and Down syndrome, as they all have different manifestations and symptoms.

Children with genetic disorders are not aliens and staring at them because of the way they look and their actions (drooling, hand flapping, yelling), makes it difficult not only for them but also for their family. The next time you see a child or adult who you suspect has a mental condition, do your bit and look away. Staring only makes them uncomfortable and discourages them from coming out and socializing.

We as a society should work towards inclusivity and the first step towards that is as simple as looking away.

– Avanti Balachander is a law student who loves reading books in her spare time and catching up with movies. Her brother has Attention Deficit Hyperactivity Disorder (ADHD) and Fragile-X, a genetic condition that causes cognitive impairments and learning disabilities. She is passionate about spreading awareness on mental health issues.

Disclaimer: The opinions expressed within this article are the personal opinions of the author. The facts and opinions appearing in the article do not reflect the views of NDTV and NDTV does not assume any responsibility or liability for the same.

17 COMMENTS

  1. Hi, My son dignosed with ADHD at the age of 5, we face many problems due to his hyper activity his energy was tremendous, he like to play, but people pull their children in front of us they told them not to play with him. then we decide send him to individual sport he join Karate now he is 13 years old a blue belt and recently join the cricket academy, he manage his study very well, our hard work and patience will work… now he is doing very good, so be calm have patience one day you will succeed.

  2. Hi Avanti,
    You expressed yourself so nicely that really got touched. I am sure many more people will read this and will open their eyes and educate them, how to behave/react in such situation. You are very brave girl!. God bless you and your family.

  3. I can very well understand i too have a son with Global development delay and vision impairment and autism.

    My pryaers for your and your bro.

  4. Hi Avanthi,
    ADHD children are born with extra ordinary energy, their energy level is quite high. they could become excellent sportsperson or dancer if their energy channelized properly. Many great sports persons around the world diagnosed ADHD at childhood and now leading normal life. I appreciate your patience and pray to god to bless your family.

  5. Hello Avanti,

    Very insightful article. The awareness and acceptance within the family can play a very big role in helping children to overcome their anxiety. A belief that there is someone, who is accepting him and is there to loves him can work wonders. God bless you.

  6. So well expressed. The only ask is not to stare at them. No body in this world is perfect and we all have some kind of syndrome, sometimes we don’t know and most of the time we ignore. So before judging and feeling pity on other person’s condition one must try to work on their own flaws. Lets all learn and practice acceptance and inclusion as it will definitely bring in change and make this world a better place to live in for our future generations.

  7. Hi Avanti,
    I can understand the difficulty and sometimes embarassment caused by the children having ADHD. Even my son who is now 7 yrs old was dignosed with ADHD at the age of 3, and since then we have been trying hard to keep him in mainstream. But in my son’s case, he is extremly hyperactive but never misbehaves to elders and teachers alike. But yes attention deficit and slow learning has been obeserved. We always try or rather push him to mingle with other normal kids and it pays off most of the time. only difficulty he faces while playing with other children is he doesn’t understand their language or commands fully that makes him little lagging in their plays or acts. We are very fortunate that the school where he studies, understand his problem and reciprocate with appropriate treament. if we had not explained the teachers about his difficulty, they would have asked us to look for any other school(special one).

    My best wishes and lot of greetings for you and your family, specially for your Brother who i pray GOD to become one of the finest in the world.

  8. Sir I am interested to work for this cause. I am in Mumbai and presently associated with U & I foundation for teaching underprivileged kids during weekends. Waiting for your response. Thanks & Regards.
    Parijat

  9. I cannot thank you enough Avanti for writing this post. I am very passionate about children’s issue and this post has opened my mind to ADHD . I wonder how kids from poor under privileged background would be coping in the absence of awareness and resources.I would love to work to create more awareness about this issue and would also like to meet Dhruv if he is in Mumbai.

  10. very well described facts about living with siblings who have Genetic disorders or neuro-developmental delayed milestones.
    Awareness about such condition and empathy will allow individuals and their families to get socialized and feel comfortable.

  11. I am deemed normal by society but even I flip out when I find people staring at me. BTW its really heartening to see the great bond between your brother and you. Dhruv is very lucky to get a supportive family. Oftentimes in India, families and societies refuse to acknowledge any condition which is not physical ailment which exacerbate the situation. Hope things get better in our country.

  12. Dear Divine Avanti ,
    Please accept lots of greetings of peace & love .
    Read your article today and was touched by the emotion of love which has so much of a healing power .
    I was motivated that we need to operate ourselves by love and let not negative emotions touch us .
    My prayers to the Almighty to bless u and your sweet family with lots of health and happiness .
    Take care .

  13. Hi Avanti,
    Are you interested or working with any organization to spread awareness and support special needs children? Please write to us..

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