A Mother On What It's Really Like To Raise A Child With Special Needs

Becoming a parent comes with its own difficulties. The sleepless nights, educational planning, endless expenses and worst of all, the horrors that come with puberty. If raising a child is so hard, imagine raising a child with special needs. January is celebrated as National Birth Defects Prevention Month, and instead of focusing on the statistics, medical facts and negatives, we wanted to highlight what it really is like to be a parent to a child with special needs. The ups, downs and everything in between. We got in touch with Kavita Baluni, mother to Veda Baluni, her adopted daughter with Down Syndrome to learn more about her motherhood, her advice for parents raising children with special needs and her experiences bringing up Veda. She says,

I am a better person today because of her (Veda). I learned about unconditional love, the beauty of being different. She has taught me there are no such things as normal. She has changed my perspective towards disability, adoption, diversity and differences.

The Stigma That Comes With Special Needs

Kavita’s road to motherhood had its fair share of stigma. Not only did she face stigma for adopting a child, but also for adopting a child with Down Syndrome. She knew that in India, there was no chance a child with Down Syndrome would ever be adopted, which is why she did. Kavita and her husband, Himanshu’s families were sceptical as well and thought a child with special needs would not be able to support them in their old-age. Outside her family, people were quick to judge and jump to conclusions as well. Kavita recounts the endless stares Veda would receive in public and the never-ending assumptions about their parenthood. It isn’t easy, but Kavita braved it. She believes that people will talk and society will continue to judge. One cannot change everybody’s perspective and frankly, one doesn’t need to. Kavita urges parents to grow a thick skin and ignore all the judgement and insensitivity that will come their way. She says,

It’s our (Kavita and Himanshu) perspective that really matters. I believe our kids don’t have to justify their existence and prove their worth. I hope things will change and I wish any child won’t get shamed for their glasses, hearing aids or wheelchairs, I believe those who are differently-abled and have different needs will be considered as a “person” first. Everything else will fall into place sooner or later.

Kavita, Himanshu and Veda (Source: Kavita Baluni)

It’s Okay To Be Scared & Feel Alone

Kavita says,

Us mothers raising children with disabilities do feel scared and alone. We are overlooked by people around us while planning or managing therapies, our kids, homes, different learning approaches, medical help and more. Despite all this, we still feel we could have done better for our kids.

Kavita believes that mothers like her feel alone because they simply have nobody who will speak to them without judgements or inhibitions. No one who will hear about her struggles without passing comments about Veda’s conditions or giving insensitive suggestions on how to deal with Down Syndrome and make Veda behave “normal”. Kavita, fortunately, found a community of mothers like her and encourages everyone to do so as well. She suggests finding communities and groups on Facebook, Instagram and other platforms to educate, inform and help yourself raise your child with special needs. Finding people who not only support but also relate to your journey is a blessing and mentally relieving. She says,

We mothers raising kids with disabilities are always here for each other. You just have to try to find your tribe.

Kavita and Veda (Source: Kavita Baluni)

Challenges Of Down Syndrome

Veda’s Down Syndrome comes with its fair share of challenges which Kavita and Himanshu had to deal with head-on. They faced physical and emotional challenges. Veda had attachment issues for a long time and her parents spent the first six months bonding with her by cocooning her and being around her 24/7. Once she overcame that, it was all about Occupational Therapy, to encourage her fine motor skills and hand-eye coordination, Physical Therapy & Speech Therapy. Children with Down Syndrome have low muscle tone and need to learn things like crawling, speaking and jumping, which usually comes naturally to other babies. Veda also had problems with her eyesight, for which she got glasses at a very young age. As expected, these brought with them an influx of comments like “Who puts glasses on a baby?” and “Are those glasses for real?”. Kavita says,

I have noticed that people will make you feel sorry about your child even if you are not. They will try to make you think that your child is incapable because of their disability or differences. But we could not care less. We are so proud of our girl & she looks gorgeous in those glasses.

Veda (Source: Kavita Baluni)

Prioritise Early Intervention & Financial Planning

Raising a child with special needs is financially difficult. Therapies, medical equipment, regular checkups, surgeries, special schooling and more can drain your savings, especially since the children need to be supported for the rest of their lives. Kavita urges parents to prioritise their financial planning. By making good and early investments, saving as much as one can and buying great health-insurance is important in securing a future for your children.

Early intervention can save you both mental and financial stress. By gathering information about your child’s condition, looking for centres, schools and therapists to help and preparing in advance will help you feel more confident and allow you to allocate your money in advance. You can prepare for unforeseen events as well.

Kavita, Himanshu and Veda (Source: Kavita Baluni)

Kavita’s 5 Tips For Raising A Special Needs Child

Take care of yourself! What Kavita has learned from her 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. It’s challenging and overwhelming to take care of a child so allow yourself to vent, grieve and even take some time off.
Accept the fact that you will make mistakes along the way. Kavita herself struggles with it but reminds herself that Veda doesn’t need a perfect home or a perfect parent. It’s okay if plans don’t work out. It’s okay to fail, it is okay to make mistakes. After all, you are doing your very best!
Make therapy fun! A child who’s struggling in therapy needs fun and motivation. Try to involve play-based therapy or activity so that the child can connect more and enjoy the whole process. It will make a huge difference.
Don’t follow or compare your child with others like him/her. Instead of listening to others’ advice, what worked for their kid, their milestones or growth, try to notice what works for you and your child and what he/she enjoys the most. Being present and mindful instead of rushing for milestones or any other developmental skills is very important.
Don’t hesitate to ask for help. Raising a child with a disability can be challenging due to a lack of social support and stigmas. It can make you feel lonely too. Find your tribe, join a community and ask for help.

Himanshu and Veda (Source: Kavita Baluni)

In The End, It Is Worth Every Single Hardship

Kavita believes kids with special needs don’t have to justify their existence and prove their worth. Hope things will change, I wish any child won’t get shamed for their glasses or hearing aids or wheelchair, I believe those who are differently-abled and have different needs will be considered “person” first.

Veda just turned 5 years old, she is the best child one could ever have. She’s joyful, kind and full of love. She has great taste in music and can dance anywhere. She’s the best teacher and has been light of our life. I have never met any human-like her, she’s mighty, resilient and has this never give up attitude. She has this ability to love people unconditionally and giving healing hugs. I wish I was like her. She’s a blessing. Life is beyond beautiful with Veda and I am so happy she chose us as her parents.