World Down syndrome day : An Interview with DS child’s mama!

The World Down Syndrome Day!

The World Down Syndrome Day is approaching on 21st March and I wanted to help raise some awareness about it. And the best way I could bring it across was interviewing a very strong mama, whom I have known for few years now. Though I had barely spent few days with her and her adorable, ever smiling DS child Vihaan, I was so proud to see the way she has nurtured him. I’ve seen many people hiding in themselves, just because their child is a Down’s baby. But, they forget to realize that their concerns negatively impact the child’s development.

Down syndrome[DS] is basically a genetic disorder, resulting mostly from the third copy of chromosome 21. It is associated with delay in physical and intellectual growth and has characteristic facial features. Though there is no cure for Down syndrome, but what matters here is the proper care, love, education which has shown to really impact the life’s quality of children with Down Syndrome. Even sensory play helps DS kids development. The diagnosis of DS is pretty possible in the pregnancy itself via Double and Quadruple marker test in the beginning. if the possibility is stated then pregnant women must go for NT , CVS and Amniocentesis tests. Do focus on every minute detail of your pregnancy test reports and have detailed discussion with your medical doctor!

Vihaan is jolly kid, who rejoices various foods, enjoys chatting with all and the best part is his ever lasting smile. He loves his beautiful family and lil sister Taani!

Let’s read, what Ritu, aka Vihaan’s mama, has to share with us and to the parents of Down Syndrome children :

We wish to know little about yourself and your family

We are a close-knit family of six – Vihaan, his little sister Taani, his parents and his uncle and aunt. Grandparents and other relatives visit frequently.

Can you tell us about Vihaan’s DS diagnosis?

Vihaan was born in a children’s hospital in Mumbai. Immediately after his birth, the paediatrician came to inspect and suggested carrying out a blood test for Downs Syndrome. He also observed that the baby was blue. Vihaan was immediately transferred to NICU, as his oxygen level was around 65. One of the heart arteries PDA which usually closes in a baby within a few minutes, was not closed. It took 7 day medication and observation for it to close and his oxygen levels to reach a normal of 95-96 when he could be brought home.

Meanwhile, the results of the blood test took about a month. His features like slightly slant eyes, flat nose bridge, puffy arms and toes, gap between thumb and fingers and his muscle tone all pointed towards Downs Syndrome. This was further confirmed by the karyotype results. But instead of having 3 copies of the 21^st chromosome which is usually the case for DS, he had 14:21 translocation. Some of the genetic material got interchanged between 14^th and 21^st chromosome.    

How have you focussed towards his development and life?

Over the time, we have started taking things one by one. We initially concentrated on his muscle tone and walking. He took about 2-2.5 years to learn walking. Once that was mastered, we focused on his speech. Speech is difficult to achieve in DS since it involves movement of cheek and jaw muscles and tongue (muscle tone is weak in children with DS). So speech is something which will take years and years to master.

But, I feel proud in saying, that he has developed a speech, that most of the people are able to understand easily. His expressions add to his feelings when he expresses his wishes.

Right now, we are concentrating on his writing. Recently, he has developed proper grip on the pencil. At about 7 years of age, he needs help with everyday activities like brushing teeth, bathing, dressing up, wearing shoes etc. Slowly he is learning to do these things independently.

But the most important impact is about having friends. Vihaan does not have many friends as other children are not able to understand him and hence cannot connect with him. Interestingly, we have seen poor children being more compassionate and interested in playing with him as compared to children from educated families. Sometimes, children also make fun of him. Sadly, Vihaan understands everything and makes a sad long face when this happens. This is the most heart-breaking for a parent to witness.

What were your main fears and concerns when you got to know of this diagnosis, as a mother and as a parent?

The initial shock is very difficult to handle for new parents. But once the phase of “Why me, and why my child” is over and acceptance gets in, the main fear was what happens to Vihaan once we are gone.

Initially, we wanted to have only one child. But after learning that Vihaan had DS, we changed our mind and planned for a second baby. We hope we are able to build a bond between the siblings and that we are able to raise both our children in a way that they stay together for their life.

How has Vihaan’s diagnosis impacted you as a person?

Vihaan has taught me to be away from the rat-race and to enjoy every little achievement. He has also taught me to be more compassionate and non-judgemental towards others.

I’m sure Vihaan has given you lots of optimism, so what all positivity have you experienced?

I have realised that we have lost the human values nowadays. Vihaan has taught me to be more friendly and non-judgemental. And to appreciate what we have rather than complain about what we don’t have. People see the disability in him but I concentrate on things he is ABLE to do.

We would like to know as to why is Speech therapy important for a child with Down syndrome?

Speech therapy involves exercises of the tongue, cheek and jaw muscles. Since children with DS have poor muscle tone, the ability to speak or to speak clearly is also greatly reduced. Speech therapy should be done as early as possible to make these muscles strong. Along with therapy, the parents should talk a lot to the child, to help the child build his vocabulary.

And what about the Physical therapy?

Physical therapy involves exercises of hand and leg muscles. Co-ordinated movements are necessary to walk, climb stairs, to jump, to hold objects and more so. They are a part of the overall development for a DS child.

We all mama’s have tough days, how do you cope during such days?

When I am having a tough day, I start to think if I don’t put in my efforts in him, then who will? This is what drives me and gets me going. Also, I feel blessed as Vihaan is otherwise a healthy child despite having DS. Many children with DS have heart ailments or eye, ear related disorders. 

There are times when Vihaan gets very stubborn and doesn’t listen at all. We have to be very stern at such times. Also, most stressful is when other kids don’t want to play with him.

What about the sleep difficulties for a Down’s Child?

Yes it is common for children with Down Syndrome to have sleep difficulties since their nose bridge is flat. Some children also have sleep apnea. There are sleep studies and sometimes a mask is prescribed in acute cases.

So, how have you planned his future?

The biggest worry is what happens after we are gone. We are hoping we can inculcate values in our daughter, so that she can take care of Vihaan whenever he needs support. But a lot of things need to be done before this can be achieved. Besides saving finances for him, we want to make him independent enough to be able to carry out his daily activities, read, write and count. We are hoping he will also get a sense of money to carry out normal transactions.

In addition, we are also trying to build a network with other such families so that Vihaan and his sister have a support group as well when they need it.

He is a lovely child, so we would like to know what interests him?

Vihaan loves dancing and doing household activities especially in the kitchen. He has a sense of rhythm since he was an infant. This is the reason we have enrolled him in a dance class. Not only does it gives him a channel to release his extra energy, he also gets to interact with other kids of his age. He has inherited his interest in cooking from his father. He is usually found in the kitchen in the house. He is right now little small to be near the gas stove but I intend to teach him cooking once he is slightly older and gets a sense of what is safe and what is not.

What advice would you give to other parents who have received a diagnosis similar to yours?

• First and foremost, STOP worrying and START acting.
• Start therapies early. The earlier you start, the less delayed your child’s milestones will be.
• Connect with other parents with children of DS. This will give you not just emotional support but also many ideas on how to teach your child various skills.
• Most importantly, BELIEVE in your child. Your child will see the confidence in your eyes and evolve into a confident person.

What would you like people to know about Vihaan and what would you like to say to them ?

Other than having DS, Vihaan has a lot of aspects to his personality. Please see his abilities rather than his disabilities. And most importantly, teach your children to be considerate and thoughtful towards everybody. We are giving so many facilities and luxuries to our children nowadays that they take everything for granted and forget to count the blessings. We are heading towards a very insensitive and an unwelcoming society.

Unfortunately, we don’t have the adequate provisions in our education system to integrate children with DS with other children in schools. A lot of talk is being done about Inclusion but true inclusion will come from the society. There are very few schools that can accommodate children with DS with other children. Since these children are segregated from the society from their very childhood, its very difficult to integrate them in society later on.

I really feel Ritu, that we as a community need to bring these changes and help raise our kids with more EQ than IQ. Let’s all come together and pledge for this beautiful deed, a deed to see the smile on the face of every child. Even a Down’s child is a child. They have a beautiful heart and an innocent mind, let’s shower all the love for them!

Get to know Ritu in her words : Juggling between being an IT professional and mother to two beautiful kids. Besides being a wife, daughter, sister, daughter-in-law, sister-in-law, I am here trying to rekindle my passion for writing and use it primarily to create awareness and acceptance for Downs Syndrome in our society. Besides, I am also passionate about raising my voice for the place of women in Indian society and in the Indian corporate world.

Love,