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.
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.
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