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.
Tan advises parents not to have unrealistic expectations of their other children. For example, a father might tell his 12-year-old son that he should be more patient with his special needs sibling and that they expect more of him, because he is the eldest.
As much as you expect your other children to be understanding and mature, they are still growing up and trying to find their place in the family.
“After all, they are still children. Even if they are 17, they deserve to go through life as a 17-year-old. They are playing the role as a big brother or sister but they also have a role as a child in the family and doing what they need to do at this stage in their life,” says Tan.
According to her, parents can be more attuned to their children by getting involved in their daily lives.
“If you used to ask them how was school and then things got busy and you haven’t been asking them that, you really need to get back on track. Pay attention to what your child is going through. Notice if your child is extremely quiet or if there are any behaviour changes. The child knows that you have more things to worry about so they would have a natural tendency to not make you worry more. So, they might keep it inside and internalise everything. Eventually, when things get out of control, then you will see that things are really not right. But, by then they might already have exploded because they have had no outlet to express their emotions,” says Tan.
She believes it is okay for the child to express how they feel – be it hateful, resentful, sad or neglected. They should be able to voice how they feel.
“Dismissing their feelings is not going to be helpful to the child’s emotional wellbeing. If the parents notice that the child threw a tantrum and if they know that it’s because of their special needs sibling, then they should address it.
“Address it and have the child know that you still care for them. That’s what they really need to hear. The tantrum is because they really want your attention and they want to communicate with you but they don’t know how to get to you using words.
“Older ones who are verbal, may express it, but those who internalise, may not want to say anything because they don’t want to make mum and dad more worried,” says Tan.
By validating their feelings, they will feel like daddy and mummy know and understand how they feel. You can tell them, “It’s okay to feel this way. Let’s discuss how we can make things better.”
You can even initiate a conversation with them. For example, “Mummy and Daddy understand that it’s not fair that we spend more time with your brother/sister. How do you feel about that?” or “What do you think we can do to make it better? We would like to have you involved in making it better for you.”
This should get the conversation going so that they open up to you. Naturally, it is best to have this conversation with them when you are spending time alone together.
“When you say it like that, the children see that you know it is unfair. Then the child won’t continue to misbehave because they know their parents are attuned to their feelings,” says Tan.
She agrees that sometimes children may just want you to validate their feelings. “The moment you say it out loud, they feel a bit better,” says Tan.
Prepare them for questions
To help the children handle situations where they are questioned about their special needs sibling, parents can prepare them by roleplaying. Try asking the children how they would like to introduce their sibling.
Then proceed to ask them what they will do and say if their friends make unkind remarks about their sibling. This way, you can help them be prepared to answer any questions that may arise from their friends, or anyone else.
“You want the children to have esteem for their sibling with special needs. This way, they will know what to do in such situations and they won’t be anxious about what’s going on.
Although it will still take a toll on them if they are teased, at least they will be more prepared,” says Tan.
Including the special needs child at birthday parties and family functions is a good way to normalise the family situation. Tan says it is important for parents to model what they want their children to emulate. If the children see that their parents are not embarrassed of their special needs sibling, they will feel the same way.
It’s also a healthy and thriving environment to have all the children playing together at birthday parties and family functions.
Dr Ezura and her husband make it a point to include Iyad in all activities and meetings with typical children and people around him.
“There should be no discrimination towards him and we tell everyone about Iyad’s condition. My daughter has also told her friends and teachers about Iyad’s condition. So far, the older children have never displayed any embarassment about Iyad. They adore him so much,” she says.
While much is expected of siblings of special needs children, parents should be mindful not to overload them with too much information, says Tan.
“As much as you want to give them information and prepare them for the future, you need to do it according to their age. As they grow into adults, the children will know that some day they may have to take care of their special needs sibling. It is not advisable to keep telling your children from a young age that they will have to take care of their sibling in future. It’s also better if they volunteer to take care of their sibling, because then it will be their intention rather than yours,” says Tan.
Advice for parents
Dr Ezura admits that it is quite tough explaining medical conditions to children. She advises parents to do their best. “Showing pictures and videos about other children with the same condition may help them to understand better what their sibling has,” she says.
She also reminds parents to spend enough time with the other children.
“You may spend more time with your special needs child for his rehabilitation and medical appointments, but that doesn’t mean you have to neglect your other children and even your spouse. Take time off to treat your other children and spouse to a movie or lunch without
your special needs child so that they won’t feel left out.
“It is also good to bring your whole family along for hospital appointments and rehabilitation sessions for your special needs child, as well as to attend gatherings with other families with special needs children, so that your whole family can get the support they need from the other families,” says Dr Ezura.
Article republished from Brigitte Rozario (18 August 2015, ThotsnTots)