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In search of light at the end of the tunnel

In search of light at the end of the tunnel

Siblings of children with special needs share the pains and joys of growing up in the shadow of their kin
Photo by Anantha Subramanyam K

Vanya Saxena (name changed) was all of two and a half when her little brother Rahul was born and everybody was overjoyed. So was she. Until she realised, a few years later, that this was not going to be a fun relationship like other siblings had. She noticed that her parents paid him more attention most of the time and it was like she had become a shadow who needed to make a lot of noise for them to even look at her. Even then, her issues were usually swept under the carpet as her little brother was so demanding. Soon everything in the house became tailored to his needs.

“It was as if I was a ghost in my own house and like I didn’t exist because I was nowhere in the picture. Of course, all my basic and material needs were met, but as I grew older, that was not what I wanted. I wanted my parents to pay attention to me, but with dad being a workaholic and mum being quite frustrated and angry most of the time after she had to give up her job to look after Rahul, my little issues didn’t really matter,” says Vanya, who is now 19 and pursuing a home science degree from Delhi University.

She says, at the risk of sounding brutal, that she hasn’t had a good, normal life because having a special needs brother like Rahul has been hard on her. Her brother was diagnosed with ADHD, dyslexia and dyscalculia. But now, at 16, he is studying in a prestigious Delhi school that allows remedial help and a scribe for children who are facing learning and developmental issues. “While my parents would like to believe that things are all okay and we are a normal family, the truth is, I have borne the brunt of this whole thing. Nobody realises how bad it actually is unless you’re a sibling like me. Though there are very few good parts too,” says Vanya who has just completed a course in makeup too and plans to make that her career.

She says that being independent from a very young age is one of the good outcomes of having a special needs sibling since she was left to fend for herself. Her father worked hard at the business he had, and her mother was running from pillar to post for therapies, tuitions and treatments for her brother. She says another positive point is that she now knows the things she would never do as a parent because she felt neglected while growing up.

“I remember, while in school, I would talk to boys, senior boys even and try to get into trouble so that they (my parents) would pay attention to me. I’ve also been to a counsellor. So, it clearly hasn’t been a joyride. When I was two and a half, my mother stopped holding my hand. As for Rahul, he’s 16 now and she’s still holding his! I don’t mind that he needs a bit of extra care but this constant pandering to his needs makes me anxious. I cannot go for a holiday or where I want because his needs are first. We go to places he likes. So, I stopped enjoying family holidays. When I was younger, I could not even watch a television programme I liked because Rahul would scream for Doraemon and throw a fit if his needs were not met. I mean there are a million things and it’s certainly not the most balanced way to raise another kid alongside,” she says, sounding much more mature than her 19 years. But she points out that there have of course been good moments when the siblings have hung out together, had fun and bonded together as a family. But the writing on the wall is clear. It’s been a hard journey so far, one that she wishes she could rewrite.

Then there is 10-year-old Abhinav, brother to 12-year-old Arnav Bhatia who has classic regressive Autism (PDD-NOS). Abhinav feels that there are always two sides to a life like this. He agrees that it is not easy to live with his brother because he is a difficult person, with his frequent meltdowns and aggressiveness (largely precipitated by oncoming puberty) and shrieking bouts. But they manage to balance it out. “I really don’t like it when Arnav goes off on weekend drives, just when I want to do some activity with my papa. He gets a lot of attention because he has special needs but this particular thing really makes me angry. I sometimes go on drives too, but I don’t enjoy it all the time. And there are so many things I want to do but cannot do,” says the student of Shikshantar school in Gurgaon.

He recalls a time when his brother bit him during one of his aggressive phases and he had to be hospitalised. “I’m close to my brother and I really love him. That said, there are lots of ups and downs mostly that one has to get used to. I feel better when some of my friends understand his condition and are supportive. Some are of course, very insensitive. But what really matters to me is when he (my brother) understands that we need to share our parents’ time. When that happens, I feel happy. Otherwise, it’s not so easy,” he signs off.

“In such a scenario, though parents are already overburdened with the needs of the special kid, they should yet try to balance it out, because there is no easy way to raise a neurodivergent and neurotypical kid together,” says psychologist Karishma Mehra, 39, who is also a happiness and mindfulness coach and director with the Delhi Cube Association that conducts workshops for kids. “I’m not just saying this as a professional therapist but also because I too have a special needs sibling,” she explains. Her brother Karan (37) who is two years younger than her, has a learning disability and severe dyslexia. He lives in Mumbai. She feels that living with a disability in the house can either empower you or break you. And when she was younger, it had the latter effect.

“It was a difficult time for my parents; more so for me and when we were growing up, I can say with honesty that I would be angry with him most of the time as my parents were always fixated on him. I grew up on my own. There were times when I was unkind to him and couldn’t understand what his disability was all about. People actually said he was mad and I believed them. I felt that because of him, the whole family equation had changed. That caused a lot of grief and sadness in me and also repressed rage.” It was only after many years passed and when she looked at the situation with maturity that she could empathise. “This personal experience shaped me and made me who I am. It led me to study therapy and get into counselling,” she acknowledges.

She cautions parents to not let the sibling become a caretaker for the special needs child. It can overburden the sibling and therefore rob their right to a normal childhood. If it’s emotionally tough for parents and caregivers, it’s also tough for a young child who doesn’t get his/her share of time or love. She says a parent should remember a few simple things about the neurotypical kid. They want to be heard, to be appreciated, to be validated, to have their personal space with parents or family. She says to give support to the sibling, one should include them as a part of conversations (or therapy or interventions) and forge a deep connection on a one-on-one basis along with spending mindful time with them.

And despite the darkness, there seems to be some light at the end of the tunnel. Says 9-year-old, Ryan Chaudhary, a student of Step By Step school in Noida, whose 15-year-old brother Neev is autistic, “Like every other sibling, we have our share of fights and love and though my big brother has a lot of physical issues because of which we cannot play any outdoor games together, he tries to participate in whatever he can inside the house. I would say the good part is that he’s very loving and quick to console me if my parents scold me. The bad part is that he’s got these fixed habits like singing a lot the whole day, eating the same things for most meals and frequent mood swings. I feel that our parents are trying their best to share their time with both of us. And that matters a lot.”

Dr Mehra emphasises that everyone around should realise that it’s not an easy journey for the sibling and parents should pitch in where they can, to normalise an already stressful situation. “The thing is when everybody is sensitised, it becomes much easier for the family, the special needs kid and the siblings. These neurotypical siblings are different from other siblings in the sense that they grow up with a lot of empathy, kindness, and humility for people around because they have seen disability from their birth and coping with it becomes a life skill.”

Delhi boy Udai Aditya Middha, 13, a student of Laurel Springs, an online school in California, is also a world amateur golf ranking player. His sister Piah (19) has cerebral palsy. He says that though there are cons, he tries to keep his eyes focused on the pros. “My big sister is quite loving. She has a lot of physical limitations. But though she misses my mum who usually travels with me on my tournaments, she doesn’t create a fuss and tries to adjust. That’s a big support,” he says.

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