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Westcoast Resident: A learning experience

DNMUM303011 | 4/11/2014 | Author : Pooja Patel | WC :694 | Health

On the occasion of World Health Day celebrated on April 7, 2014, dna Westcoast spoke to parents of special children on how parenting is a mixed bag for them
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Down syndrome (DS) or Trisomy 21, a disorder that delays the physical and intellectual development of a child, adversely impacts thinking ability, muscle tone and joints. Children with DS are usually victims of negativity and stigma, as there is little  awareness about it. Thankfully, however, this scenario is slowly changing and these children are now being accepted into mainstream society.
“Parenting a child with DS is very challenging, especially at the beginning. The information we get when they are diagnosed can be quite depressing and demoralising. It is, however, quite rewarding and heartening to see them learn new things—which may often be much more than you would ever expect. The more effort you put in, the better results you will see in your child. A child with DS should be treated, as far as possible, just the way you would treat any other child,” shares Shamane Rebello, a parent from Santacruz.
One of the basic misconceptions about DS is that people think of it as an illness, while in reality it is a genetic condition. Children with DS are sensitive and innocent; in fact it can be a pleasure to bring them up as they are capable of showering a great deal of love and care on their caregiver.
Integration is the key
These children should be allowed to interact and play with other children, as many of them are quite capable of studying in regular schools. Sensitising other normal children can help bust the myths about these children.
Farheen Shaikh, parent from Goregaon, agrees. She says, “Anas, my 12-year-old son, is a happy child but he gets upset and irritated when we go out. He does not like people staring at him or whispering in groups when he passes by or worse, when they come up to me and ask questions about him. The whole parenting experience is challenging, but people’s presumptions make it all the more difficult.”  
Children can be great teachers. These children can actually bloom into beautiful people and also have a positive impact on the people around them. Shaikh points out, “I was initially shy and not a very confident parent. I used to be apprehensive about what people might think about Anas. But seeing him slowly trying to cope and learn, I gave up my inhibitions. He taught me to be confident.”
Acceptance
Thaipadath Dinoo Karunakaran, father of seven-year-old Shlok Dinoo Thaipadath, who attends Dilkhush Special School, Vile Parle, says, “Initially it was really difficult for both of us to come to terms with the fact that Shlok had DS. He was born with a clubbed foot that had to be corrected and we were rather apprehensive about his future, but we gradually worked with him and got him all the medical attention that was required. We understood that in order to give him a nice life, we have to accept him the way he is—with all our love. Currently, he also goes for occupational therapy and physiotherapy and we are happy to see the positive changes in him.”
The most difficult time for these parents is probably when the child is diagnosed with DS. Parents are frightened and find it difficult to accept the truth. But the best way to start this special journey is by accepting them. Evelin Pereira, a parent from Jogeshwari, shares, “I love Clavita, my eight-year-old daughter, and I work extra so that she gets the best of everything. We lovingly accepted her and have enrolled her in a special school. She loves school, especially her teachers. I had appointed a speech therapist as she had trouble talking and it is encouraging to see the improvement. She has improved in so many areas; it is a phenomenal experience to see her happy and playful.”  
Seeing these innocent children blossom is a dream come true but the future still seems a little uncertain, as Karunakaran points out, “As parents, our only concern is about his future as our country does not have good employment options for these children.” With our society seeing a positive change in this regard, let us hope that their futures too will be secure one day!



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