UNIVERSITY student Jhanani Siva Kumar, 21, knew her sister was special fom the time she was 10. Her elder sister Naadhiya was then 13 and their special needs sister Nandhika was only two.
“We knew something was not right because she still couldn’t speak at all,” says Jhanani of her youngest sister who has since been diagnosed as a slow learner.
“I was sometimes asked to look after her. When I was young, at times I felt a little frustrated and angry because I really couldn’t understand the whole situation. But most of the time it was fun being the older sister because I always wanted a younger sister to play. She was a very cute child, and it was fun playing with her.
“I’ve never felt it was unfair because she was always our favourite. All of us pampered her and we loved giving her special treats,” says Jhanani via email.
Now that she is older, Jhanani understands the situation better. She has never viewed taking care of her sister as a burden. “I love doing it because seeing her smile is priceless,” says Jhanani.
“At times I do feel angry, when people don’t understand what she is saying even though I feel she says it clearly. And, when other children don’t like playing with her. At times, I do feel embarrassed because of the silly things she does in public like throwing a tantrum,” says Jhanani.
Keep them clued in
Research has shown that siblings of special needs children are very resilient and tolerant, says counselling psychologist Ivy Tan.
She advises parents to let their children know as soon as possible that their sibling has special needs. How much you reveal and what you say depends on the age of the children and their level of understanding.
“They deserve to know what’s going on because you are a family. If you fail to inform them, they may have assumptions about why their brother or sister is this way and whether it’s because of something they did. They will have lots of questions,” says Tan.
Dr Ezura Madiana Md Monoto, lecturer and family medicine specialist at Universiti Kebangsaan Malaysia Medical Centre, has three children – Jihan, 10, Imtiaz, six, and Iyad, three, who has Down Syndrome (DS).
“The elder two have known that their little brother has DS from the time we came home from the hospital. We explained to them about a week after his birth. We showed them photos and videos about children with DS and we explained to them the physical features and what medical problems may arise.
“The eldest understood as she was eight then, but our second child, Imtiaz, was only three and did not understand much. We told them we might have to spend more time with their little brother until all the medical problems were sorted out and that we would have to take him to school weekly for the early intervention programme. Over time, Imtiaz began to understand and now he always says that Iyad is special,” says Dr Ezura.
Make time for all kids
Initially, it was hard for Dr Ezura and her husband to juggle their time between work, the children and to find time for each other, too.
While they were lucky that Iyad did not have any debilitating medical condition, they still needed to take him for his followup checkups every three to six months.
“Once we were a bit settled, we made the effort to spend time separately with the older children without the presence of Iyad, to give more attention to them. It is quite difficult to bargain with Imtiaz sometimes. We are still trying to find the best way to deal with it.
Sometimes we include him in the activity that we are conducting with our youngest son so he won’t feel left out,” says Dr Ezura.
She considers them lucky because they live with their extended family. The older children had their grandparents and aunt to look after them when their parents were busy with Iyad’s appointments.
Spending time with all the children helps parents remain attuned to each of them and their feelings, says Tan.
“As much as the parents are very worried about the child with special needs, they also need to be very attuned to the rest of the children. While it is important to pay attention to the child with special needs, neglecting the other children can impact their childhood.
“If the other children’s feelings are not addressed properly, they may have resentment, anxiety and worries. Questions like whether their parents really love them, if not properly addressed, can affect the child till adulthood.
“Some parents will feel very guilty if they take time away from the special child, but then again, the other children are your children, too. So, it’s very important that they have one-on-one time with each parent,” says Tan.
She also advises parents to get the other children involved in making decisions for the special needs child. It could be simple things like what to wear or what to eat.
By getting their input, the children feel involved and it also builds up love and care for their special needs sibling.