Raising a child is never easy. The sleepless nights, constant pressure, never-ending stress, and the omnipresent fear of, “am I doing this parenting thing right?” are part of the package. However, when one has to raise a child with Down Syndrome, the stress and anxiety are not only amplified but also come manifest in a million more ways. In India, children with Down Syndrome are often perceived with negative misconceptions and stereotyped in the worst way possible, leaving their parents feeling helpless and isolated. However, these misconceptions are far from reality! To shed light on this and provide some relief for parents raising children with Down Syndrome, we got in touch with Iona L. Kundu, Founder of Mentaid Association and mother to a nearly 40-year-old son with Down Syndrome, Kavita Baluni, the adoptive mother of a child with Down Syndrome and Pooja Khanna, mother to a daughter with Down Syndrome. With their advice and experiences, we put together a comprehensive toolkit for parents raising children with this condition.
Raising a child with a disability can be expensive because of therapies, medical equipment, regular checkups, surgeries, schooling. Our kids need good financial support for the rest of their lives. Planning investments, savings, investing in good, full-coverage Health Insurance can help to secure the future of our kids.
While some organisations and foundations provide financial support in such situations, it is never guaranteed. Beginning your financial preparation as early as possible is extremely important!
To be fully prepared to raise a child with Down Syndrome, parents need to have essential medical knowledge that is relevant to both the condition and their child. Iona says,
Problems with the lungs (mainly respiratory infections), teeth, hearing, ocular (namely squint & cataract), thyroid and digestion are common. Premature ageing occurs and it is most commonly Alzheimer‘s. Do not slave for speech as a great number of children do not achieve this! Focus on communication instead. Non-verbal children can be as productive!
Iona further adds that 50% of children with Down Syndrome have heart issues, and having yearly general checks are vital. However, mothers should not panic as their children may not have all these issues!
Early Intervention is very important! Look for clinics and therapists offering early intervention programs for kids with disabilities so that your child can get help as soon as possible.
This not only helps with their development but also keeps them occupied throughout the day. Iona says that the key is to do regular things in a fun way. Make them help with household work – putting the washing to dry, folding, putting away things in the correct place, sorting and cutting vegetables, making the bed and more. Inculcating personal hygiene activities like bathing, brushing teeth and combing hair is important too. Along with this, creative and expressive hobbies like listening to music, dancing, doing art and making creative items should be included too. Iona says,
The aim should be to go from self-care and personal independence to education and training.
All three mothers agreed that growing a thick-skin and tuning out all the comments, stereotypes and assumptions are needed while raising a child with special needs. Kavita says,
I believe our kids don’t have to justify their existence and prove their worth.
In the cities, a lot of awareness has been created which has led to many opportunities. However, this has not percolated to the small towns and villages where often the age-old misconceptions still exist such as blaming the mother for bad karma. This can lead to people saying bad things, ignore them. Don’t let it get under your skin.
When Norah was born, there was no one to reach out to. There were very few people speaking about it. I decided to share my stories on social media to reach out to other parents. Not only did I receive immense support and positivity but in the process, I also ended up helping out other parents raising children with Down Syndrome.
We mothers raising kids with disabilities are here for each other. Try to find your tribe. We, the parents with kids with disabilities need to feel heard, visible and understood.
What I have learned from my journey so far is that you can’t make your child happy if you are not happy. You have to take care of yourself to take care of your child’s needs.
says Kavita, who believes that it okay to feel overwhelmed, sad and angry. Allow yourself to feel emotions that seem “selfish” or “wrong”. It is okay and will only help you grow as a parent and a person.
We all have struggles and challenging days. But when we look beyond those to the smallest milestones we’ve achieved, it lifts us. If you feel like you’re going through a bad thing, someone’s probably going through a worse time. I simply look for one little joy in a day, every day.
The joy and fulfilment you get when your child has reached a milestone is a feeling that no regular child can give you! Take it in wholly and fully!
All three mothers firmly agreed that comparing your child to others, in terms of the condition, development, medical aspects and others is terrible. Nothing good will ever come out of it. Iona believes that each child with Down Syndrome is unique, and what works for one child, may not work for all, and vice-versa. Kavita believes that each parent should determine and set their own milestones instead of following those of others. The developmental time-line is not the same for all children and mothers need to be aware of this!
I am happy to learn that given an opportunity, young adults with Down Syndrome, can lead regular lives in the community.
says Iona, who’s son has been able to contribute to the family and the community. She says that he has been a torchbearer of sorts – giving his own opinions, making decisions about his life, spending leisure time on his own or with friends and even having responsibility as a server in the Cathedral. It is not only possible but very much achievable.
Children with Down Syndrome are beautiful, capable and human in every single way. While society’s perception of them has changed considerably, there is a long way to go, and we are confident we will get there soon!