Kids with Down syndrome need proper care, support

Kids with Down syndrome need proper care, support

By KORAL DASGUPTA | | 26 March, 2016
Parents should inform themselves better about Down syndrome.
ADITYA TIWARI, a software engineer who adopted a child suffering from Down syndrome, shares his parenting experiences on addressing problems faced by kids with developmental disorders.

We as parents often complain about the myriad responsibilities and engagements that come with a baby. As much as we love our babies, the additional work drains us of our energy. We discuss schools and playschools, we talk about work-baby balance, we wonder how to shape the learning curves and everything else that falls in schedule once the baby arrives. But what if destiny have other plans? What if all or parental banters seem very basic and useless? What if all our dreams about the future fall flat, staring blankly at our faces?

The first thought is, why me! But then, life goes on.

21st March was the World Down Syndrome Day. So many children around us fall under this cause. We, the fortunate ones, often don’t bother. But for a while, just think about the kind of patience and sacrifice that parents have to go for if their children exhibit Down Syndrome. Instead of me writing a researched report on this, I felt that it would be better if I report something inspiring and bring to the table some emotions and examples worth sharing.

You may have read about Aditya Tiwari, a software engineer from Barclays, who is the father of a baby suffering from Down syndrome. The difference however is that, Aditya is not the biological father of the child. He is a bachelor, who has set a paranormal example of humanity by adopting the child. What made him take this impossible decision? Why did he adopt this special child, when in dark corners of the country even biological parents of such children call their fate a “curse” or “sin”? What are the preparations and how does he foresee fatherhood in the days to come? Questions are endless. Not every question would have a perfect pre-planned answer, because when decisions are taken from the heart, hurdles are dismissed on the run. However, for all of us to be educated and aware, and be a part of the cause, given below are excerpts from the conversation we had.

I: What is Down Syndrome?

Aditya: Down syndrome is a set of physical and mental traits caused by a genetic problem that happens before birth. Children who have Down syndrome tend to have certain features such as a flat face and a short neck. They also have some degree of intellectual disability. This varies from person to person.

I : What causes Down syndrome?

Aditya: There are three types of Down syndrome, namely, Trisomy 21 (nondisjunction) (accounts for 95% of cases); Mosaicism (accounts for only about 1% of all cases) and Translocation (accounts for about 4 % of cases). Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra critical portion of chromosome 21 present in all or some of their cells. This additional genetic material alters the course of development and cause the characteristics associated with Down syndrome. Down syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Down syndrome. Since many couples are postponing parenting until later in life, the incidence of Down Syndrome conceptions are on the rise. Therefore, genetic counseling for would-be parents is becoming increasingly important.

I: You are the first single man to adopt a child, whose biological parents had abandoned him! What made you do this?

Aditya: that strengthened my pursuits further. I thought my son, Binney’s biological parents would be poor. I thought they left him because they don’t have the money for his treatment. But I was shocked to find that they were educated and a very well to do family. When I requested them to take back the child, informing them how such children are often given for foreign adoption illegally, they refused. For them Binny was a misfortune. These innocent children have no clue why they are discarded. But they are as beautiful as any other child. I connected with him right from the first day I saw him; and he responded to me. I couldn’t have let go of him like his parents did. I thought we’ll battle together whatever barrier comes henceforth. A man like me who has no wife has to seek help from other family members. My parents came forward to fulfil that space and my desire to adopt Binney. I adopted Binney; not a child who requires special care. Agreed that for my son, his milestones seem to be a little behind compared to that of a normal child. Initially, in his Montessori school he might be able to cope with stringing off beats, felling of sand & balancing a cup, but when he has to learn the alphabets & poems, I am praying that he does it smoothly. Maths & Algebra, Geometry & Science may be challenging, but I hope to acquaint him with the butterflies & birds, the roses & tulips as he grows up.

I: Weren’t you scared of the future you are planning by adopting such a baby?

Aditya: You can’t choose your baby when you give birth to him. Something similar happened to me, when I connected with him instantly and he reciprocated. You can call it an emotional decision, but I call it destined. I am as strong as a father should be; Binney is as innocent as a baby should be. Who knows what lies in the future anyway? It’s not the end of the world for most babies who show these tendencies. That’s the mind-block we have because of lack of awareness. In most cases, symptoms are mild to moderate. Agreed that Down syndrome is a lifelong condition. But with care and support, children who have Down Syndrome can grow up to have healthy, happy and productive lives. Initially this child also developed the very same symptoms as in other cases, but now the situation is something the people can’t even believe. Binney is 2 years old now and he’s also growing and responding like other child of his age. I am quite aware that as a teenager he may suddenly realize he wants to jazz around with friends and date nice girls, but his flat foot and non-turning fingers are being impediments. When I watch him dancing to music today, I hope, the early training and instinctive attitude will help him along to achieve the best. We’ll have to accept it; we’ll have to stand by him.

I: What is your learning till date?

Aditya: Children suffering from Down Syndrome are often left alone to face dire consequences. I fought a long battle for adopting my child, Binney. His own parents left him in an orphanage thinking that nothing can be done so what’s the need of keeping the child with them. This is completely wrong perception. In India, people tend to rely and believe only on fast and easy treatment access, which is not possible in case of any genetic abnormality since in such cases, the recovery process is gradual. Nothing can change overnight, but the parents’ sincere and constant efforts can surely cause a miracle to happen.

I : What are the treatment options in India?

Aditya: In India, various organizations have taken up the cause involving themselves in the treatment of Down Syndrome. They have witnessed miracles happening in few cases. Two of them are Down Syndrome Federation of India, Chennai and Mindheal Homeopathy Clinic, Chembur, Mumbai. Potential treatments include early intervention; alternative therapies involving a wide range of theories and treatment practices which parents should discuss with their doctors in order to learn more about any known benefits and side effects; occupational therapy facilitates the development of fine motor skills  like feeding, dressing and grooming; physical therapy to facilitate the development of gross motor skills like posture and proper foot alignment; and speech and language therapy since speech and language development can be challenging for many children with Down Syndrome. This can help infants and toddlers begin learning how to communicate, and help children progress in speech and language.

I: What are the triggers to stimulate better health for people with Down Syndrome?

Aditya: I can’t ever be rude to Binney, or shout at him for not understanding things. Patience is not a choice for me, it’s the way of life now. Individuals with Down syndrome are becoming increasingly integrated into society and community organizations. Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down Syndrome reach age 60, and many live even longer. Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop to their full potential and lead fulfilling lives. It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts, and should be given the opportunity and encouragement to develop them.

Aditya Tiwari made a huge statement for the world to seek inspiration from. When parents consider special children to be a result of God’s wrath on them, Aditya welcomed it as a conscious choice. For many such children and their parents who are suffering in isolation and lack the voice or confidence to speak out, it is probably time that they feel unapologetic about themselves. Of course this is better said than done. But think about it. Only you and I, and everyone else who haven’t experienced Down Syndrome in our lives, can stand by them to empower them and hand-hold them back to the lives that we all can share together. A little awareness, a little compassion, a little empathy, and we might just achieve the unthinkable!


There are 2 Comments

Very difficult choice madly Aditya. I don't think I could have done it.

Hello we are a group of middle schoolers who are making a genetic website on Down syndrome. May we use the first picture of the little boy with bubbles?

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