We are glad to showcase inspiring and interesting stories on our platform. Here is a mum who gets to live parenting in normal and special way every single day. Kajal Shah is a mum to twins who are born as gifted children in her world, where one child is growing up as a normal child and the other as differently abled. Kajal Shah is an individual whose story and opinions on life will perhaps inspire you in various ways.
She shares with Mums and stories, “ I grew up in a Gujarati Jain family with three siblings – one elder sister, one younger sister and one younger brother. But growing up with my siblings and cousins in a close-knit family and also driven by religious values in the family, we learnt to be disciplined and well-mannered and also very close to each other.
We are very well connected today too despite all of us being in different parts of the world and have a very good sense of belonging. I see this flowing in my twins and their cousins too.
While I have worked as pre-school teacher and coordinator for over 7 years in past, I am currently a stay at home mum, focusing on my twins.
My pregnancy was not easy for me but I enjoyed it anyways. I had commonly observed problems like vomiting, nausea, etc. throughout. But it was also a phase where I was excited, especially after we found out that I was carrying twins. During my pregnancy phase, I had undergone several scans by my doctors including NT scan that could have detected Down Syndrome. But there was no indication from any of them. While the doctors regretted it later, it would not have made any difference to me and my husband. We see our child with down syndrome as an opportunity rather than a problem.
It is a mixed feeling to be honest. While we are not depressed about our one child being a child with Down Syndrome, we have observed him to be slower than his twin brother. Accepting it early on that they are not the same and they would have their own growth paths with their own milestones has made it a lot easier for us. Besides, having twins has been a great blessing because they both learn a lot from each other, especially my child with down syndrome learns a lot from his typical twin brother. It has in fact contributed a lot to him achieving a lot of his milestones so far. Overall, we are happy about the progress of both of them and we do realize that comparing them with each other would not help (it’s same for any child – can’t compare even two typical children with each other).
We found out on day 3 after my children’s birth. It was a painful process for the first 3 days. Every couple of hours, different doctors from the hospital would visit my room and examine Maneet (my child with down syndrome) and not examine Maanit (my typical child). And when we ask them what the matter was, there was no response. They got Maneet’s genetic reports done and got a confirmation on day 3. That’s when they informed us. While we as parents have been managing it well since then, the professionals like doctors, caregivers, teachers and society in general needs a lot of awareness in India. Kushal (my husband) and I are affiliated with Down Syndrome Federation of India (Chennai) since Maneet was six months old, and we see a lot going on to create awareness. We see a lot happening in the area of awareness, but we often come across examples of lack of awareness in parents and professionals, which is a very serious issue. A lot needs to be done and we are working on it, especially the Federation.
On family front, everyone is aligned and we all are very happy. We see raising Maneet as an opportunity rather than a difficulty or problem. Acceptance of Maneet as a regular member of the family has never been a concern. My husband and our parents and siblings are all loving and caring. Family attention is equal for both Maneet and Maanit. Everyone in our family and close friends group have accepted Maneet without any difficulty. We are very happy for his inclusion and the support we get from our extended family as well as friends.
I started a parent’s self help group on Whatsapp to provide a platform to Down Syndrome parents across India a couple of years ago and we are a 500+ strong community today. Key objective of our group is to help parents with child with down syndrome at various stages of their life and guide them through mutual knowledge sharing by other senior parents as well as some select professionals, who we have good experiences with and who are ready to help.
At times we have to give more attention to Maneet, but Maanit would understand. Usually, we would try to divide and conquer between Kushal and myself. So if I am focusing on Maneet at any given time, Kushal would focus on Maanit. Having said that, we have our own picks and drops in the attention we give to both at different times depending on situational requirements. We are trying our best to ensure that they get equal attention, may be not simultaneously but on need basis. We are also training Maanit to understand that his brother is a special needs child and that he need to support him. It is working well so far and hopefully, we will continue to manage it well in future too.
My aspiration for my kids, is that they stay healthy and enjoy their life. Kushal and I are not particularly worried about their academics and beyond at this stage. One thing Maneet’s genetic condition has taught us well is the concept of “carpe diem”. We believe in taking life one day at a time and focus on immediate milestones rather than planning long-term for them. We are particularly not worried about their career aspirations, etc.
We are focused on providing them exposure to various things in life, e.g. sports, music, dancing, science, languages, etc. We would rather have them decide what they want to do later in their life once they grow up.
Certainly, it requires huge amount of dedication and patience. With Kushal being busy with his professional life and traveling most of the time, a large part of raising the kids has become my responsibility. My aspirations to develop myself further in the field of pre-school teaching or becoming a child psychologist have certainly taken a back-seat but with a renewed purpose. I am now focusing on acquiring special education skills and planning to pursue my studies as special educator.
This would help me in focusing on Maneet’s development as well as contributing to the field of Down Syndrome. To be honest, working on Down Syndrome has become a real aspiration for me and I am committed to it now. Besides, raising Maanit as a typical child and giving him the necessary attention is equally important and his growth is also a priority for us. Hence, there is no time to think about what I could have done. Having said that, yes I have my own mood swings at time and I do feel stressed at times. But balancing between my own mood swings and focusing on my kids is the newly acquired art.
There are lots of myths about Down Syndrome and other special needs too, e.g. autism. Not every child is same – and that’s equally true for typical children and for special needs children. Every child needs individual attention and their learning process and speed is unique to others. Comparing special needs children with typical children or with other special needs children is not the right thing to do as parents or caregivers. Instead, looking at individual potential of each child and letting them develop life skills and professional skills at their own pace is a better strategy.”