MY NIECE Maya is 14 years old. She is only 15 months older than her brother Rahul. When Rahul was diagnosed with autism at age five, she was just a little girl who did not understand what was going on with her brother. She didn’t understand his special traits or his particular behaviour.
For the next four years or so, we were constantly answering her questions about him. Most of the time all we could say to her was “he’s different” or “he’s special.” We were happy that although he did not communicate verbally with her, she was able to understand him and play with him.
Over the years we made a concerted effort to help her deal with having a brother with special needs; we found videos online to explain autism, we spent extra time with her so that she would not feel left out or unneeded; we took them out together so they could have shared experiences but at the same time we made sure she did things she wanted to do.
As she grew older, she understood that he was “different” but that being different was okay, and so she became his biggest support and most invaluable friend. She has been to many of his appointments, stuck to his side when there were medical emergencies and she volunteered at his schools where she learnt activities to do with him. Today, she’s one of the most vibrant autism advocates and she wants to become a development therapist so she can work with children with special needs. We are very proud of her and we feel more comfortable knowing that Rahul has her on his side. While our concerted efforts at helping Maya to understand her brother paid off, this is not always the case though. Sadly, there are many siblings who grow up to resent their special needs brother/sister; many feel neglected by parents who focus more on the child with special needs; others feel embarrassed and unable to relate to their brother/sister.
There are two main types of special needs siblings – those who adopt the role of protectors (defending their sibling in whatever way) and those who are resentful and/or embarrassed. Maya belongs to the first category while one of her peers, Tricia, blames her parents for having a child with special needs. Tricia’s brother, Jason, is only six years old and was recently diagnosed with autism. Tricia hates that her parents are always focused on Jason and, according to her, “their world revolves about him and they have no time for me; my needs are never important and I cannot have a life because of him.”
Having a brother or sister, whether older or younger, with autism or any other special needs is a very challenging experience. Special needs siblings are often required to put their own needs behind those of their siblings. Many times they are called upon to help with their brother/sister, they are required to have a level of understanding and acceptance beyond that of their peers and when the focus is on their siblings’ therapy sessions, medical needs and special schooling, they may get subsumed within the family. Growing up in the shadows of their siblings often leads to jealousy and resentment especially when they are required to give up some aspects of their lives to cater to the needs of their special siblings.
The ideal situation, therefore, is to put things in place to help them to cope with the special needs of the family. While each situation is different, parents and the family on the whole, play an instrumental role in helping a sibling to understand, accept and unconditionally love their special needs brother/sister. This can be done when parents make the effort to explain the situation; to help the sibling understand his/her brother or sister’s special needs.
Parents have to be careful to not demand and expect the sibling to automatically understand and fit into the other child’s world. Every child needs to feel loved, wanted and important, special needs or not.
When the siblings engage in activities together they are allowed to develop their own unique relationship.
When siblings are proud of their special needs brother/sister they can become their closest friends, their main support system and their most important advocate.
When positive interaction is encouraged between siblings then there might be a bigger possibility of a child growing up saying “I am my brother’s keeper.”