The everyday difficulty of being a special needs parent

Society at large continues to marginalise special needs parents, and at times fails to recognise the invisible barriers against children with neurotypical disorders.

Kavita, a special needs parent, wrote to GurgaonMoms asking for help. I reached out to her and found that she was suffering from increased anxiety and depression. During our conversation, she expressed how she longed to have a ‘normal’ experience of motherhood. So far, it has been a lonely and draining journey. It was heartbreaking to see a mom long for something that many of us take for granted. She definitely was overwhelmed. However, I could also see how she would go to the ends of the earth for her children.

Society should acknowledge that it is not easy to be a special needs parent or sibling. They must extend genuine help and not pity or sympathy. (Pratham Gokhale/HT Photo)

One of the frustrating challenges special needs parents face is social isolation. Ruchika Sethi is committed to creating awareness around this topic by sharing personal experiences in her social media write-ups. In one such post, she points out how the larger society continuously separates them from mainstream and, as a result, reinforces invisible barriers against children with neurotypical disorders. Ruchika is mother to a 17-year-old girl Manavi, who suffers from intellectual and developmental disability. During one of their mother-daughter visits to a restaurant, the server changed their seating when he noticed a happy Manavi , flapping her hands and making joyful sounds. Ruchika shares that there have also been instances where families dining next to them have changed tables to avoid them.

Another common experience shared by special needs parents, is their distressing encounters at the society/condominium’s parks. They get stared at. People (adults and children) around them start talking about them in whispers. And then they all leave. The child is left all alone. They show no sensitivity whatsoever to the special needs child. These strong parents are forced to fight several battles for their kids — for understanding, acceptance and inclusion for their kids.

Dr Roma Kumar, a clinical psychologist, observes how things can be different, if only the larger public can envision ourselves as a community that welcomes, encourages and supports individuals who have different intellectual abilities. To be able to include special needs individuals as “full members” of the larger population, she stresses on the need for vigorous, systematic, and consistent actions by schools, condominiums and each one of us to bring about awareness and sensitisation.

GurgaonMoms member Upasana Luthra, whose son has special needs, emphasises that society should acknowledge that it is not easy to be a special needs parent or sibling. They must extend genuine help and not pity or sympathy.

Special needs parents share some tips on what to do that will help cope:

1. Find a support system : This will help you discover coping strategies, new resources and support from other parents who are also walking this path

2. Ask for help: Asking for help is a sign of strength, not weakness. So do not hesitate to open up about the challenges and ask for help

3. Take care to nurture sibling relationships: It is common that the special needs child can take much of your time and in the process, make the sibling feel neglected. Upasana reminds that it is very important that parents carve out quality time for the sibling too

4. Take care of yourself: This is extremely important and cannot be postponed

Some things that the larger society can do to make the society more inclusive for the special needs children and their parents

1. Parents need to explain to their children that a certain child is different /special and he /she may play/behave differently. And your child should never taunt or tease them or refuse to play with them

2. When you see a child having meltdown, DO NOT STARE. If the mom needs help, she will call out. It is important to remember that the child does not like to be touched

3. If the parent is your friend, you can find out if you can be helpful in anyway. Maybe a friendly coffee date or even a gesture like sending the child’s favourite food, can make the parent feel supported

4. Help finding house help. Though it may sound frivolous, it will be a huge help because fewer people are willing to work at their households because of little or no awareness.

(An advocate of women’s rights, Neela Kaushik started a Facebook community called Gurgaon Moms to create a local support network for mothers in the city. Today, it has more than 25,000 members.)