“My Child is NOT a statistic, NOT a number, NOT a diagnosis, but a person with different abilities, taking on a difficult world. She proves every day that she is a miracle and she will never give up. I am her voice and she is my heart!!”
I share my experiences with you by first sharing this beautiful quote which truly describes the relationship between me and my 11 year old child who is Down syndrome. It has not been a smooth sail as it may seem but I feel whatever I have accomplished till date is because I decided to make this challenge as my strength. When I was informed in the operation theater by the doctor that my bundle of joy I had just delivered may not be a cause of joy but many a concerns…like any normal human being my world came crashing down. Being told that your child has a disability can be as traumatizing as learning of a family member’s sudden death. Receiving such a message can produce overwhelming emotions of shock, disbelief, anxiety, fear and despair. Within that moment, research has shown, that some parents cannot distinguish between the unconscious wish for an idealized normal child from an unthinkable, sudden reality of one who is not.
As days went by and the initial bouts of trauma & depressions had settled, I took up this task of empowering my child to lead a normal life just like my older normal child. There were hitches & disruptions, there were challenges & frustrations and there were tears & sleepless nights but I relentlessly strove to take it in my control. And trust me life has been much easier since then. Today, all those struggles of years gone by, the positive attitude, support of family , husband & my older daughter being my pillars of strength , relatives and ever loving friends and also the school she went to have made the journey joyous.We have learnt to celebrate each accomplishment and victory as a major achievement in our lives. I believe Kittu, as we lovingly call her is my biggest teacher. She is my inspiration to live life full of zest and laughter. Her exuberance is infectious and once people come in touch with her can’t let her go….I feel truly blessed. Kittu is by God’s grace physically fit, mobile & completely independent, the only concern is her learning disabilities. I am confident that the paths Kittu treads upon, she will have success touch her feet. She loves adventure and has no fear, be it water or mountains. She has conquered all fears and is a source of inspiration for many. I feel that acceptance by parents is the key to their child’s success. Once we accepted Kittu with all her shortcomings, as they may seem, taking decisions for her future, showing her the right path became very easy.
We were in Mumbai prior to shifting to UAE . She was doing a wonderful job at school there. We always had the option to get her admissions in an integrated school. But we took this tough decision to put her in SPJ Sadhana, a school for children with special needs, and thankfully on hindsight I realize that though a bit tough at that moment, the decision worked in her favour. Today she has blossomed primarily because of the individual attention she got in her school in various aspects and the cooperative synergy between them and us as parents.
I am a mother and the one responsible for giving a perfect life to my child, be it the upbringing, providing support or handling tantrums. Yet no matter the different roles and responsibilities each person has or takes on, it often falls on the wife and mother to discern how to best support and nurture each relationship within the family. The same goes for balancing between the upbringing of two children specially if one is a normal child and one has special needs, like in my case. It then often borders on being nothing short of a challenge. But my older daughter has proved to be an asset in my case. She supports and assists as and when required but at times displays tantrums when Kittu gets all the special attention, which I feel is normal.
The key to balancing between a normal child & one with special needs is following a few fundamental rules:
Valuing them as adult individuals because God has made them different leaving no scope of comparisons
Protecting them rather than overprotecting them and giving them their respective freedom
Giving attention to each child before they need it and letting them make their own choice
Being proud of each one whenever they put forth effort — whether they excelled or not.
Helping our children understand that the different seasons of life have different needs, along with the importance of adjusting to them.
Respecting our typically developing older daughter’s individual social life— training her to know how to care for kittu, but never expecting it to be “her job.”
As parents we do everything we can to ensure both our daughters get their desired attention. But if the society we live in, also contributes by empathizing with differently abled children and there is adequate awareness, it will become easy for us to make our daughters experience social privileges. Another key responsibility that we have as “special parents” is to put in right efforts to educate our community on how to accept, interact & deal with them. Communities across schools, institutions need to be encouraged to engage and participate along with students, staff and teachers of special schools to bring about better understanding. Just as it is important to accept different races and cultures but also those who have special needs and move towards an enhanced inclusive approach by merging the needs of various sectors of society. The society needs to respond kindly and not judgmentally. I would like to conclude with a few beautiful words:
“Children with special needs aren’t sent to special parents, they make parents special.”