Children with special needs often get extra attention from people around them. Usually, this attention is unwanted especially since it may come with offensive comments and questions. Although the little ones are probably unaware of what is being said, their parents – the recipients of these comments and questions – are the ones who get the brunt of such remarks.
Even well-meaning family members, friends, or strangers can end up offending the parents of a child with special needs without realizing it. Most of the time, there is no intention to do so, but a lack of understanding of the child, the family, and their special circumstances may lead to words that can be upsetting for the parents.
To avoid these awkward and unpleasant situations, we asked some parents of children with special needs what they dread hearing from other people.
1. “Kawawa naman siya/Kawawa naman kuya niya” These words are expressions of pity for the child and of how his condition is a misfortune or a tragedy. For Pittipat, 44 years old and mom of Nathan (7 years old) and Nina (5 years old, born with Apert Syndrome), “My daughter is ‘kawawa’ only if she allows her condition to limit what she can do, but she doesn’t. Her brother is ‘kawawa’ if my daughter is considered a burden, but she isn’t.”
Children with special needs are different, but it does not mean that their condition is something to be pitied. For their parents, they are as they are supposed to be and that does not make them less than others.
2. “What happened to her? Did you know beforehand?” To Pittipat, these questions suggest she may have done something to cause her daughter’s condition or that they didn’t do anything to help her. She usually tries to explain her daughter’s condition and that they only found out about it after birth. She would also often add, “Even if we had known beforehand, we would not have considered terminating the pregnancy and we would still have her.”
If the goal of the question is to understand the child’s condition, a simple “What’s her condition?” will suffice.
3. “Is it from your side of the family or your wife’s/husband’s?” Any of these questions can be taken as pointing fingers at who or what is to blame for the child’s condition. According to Vanessa, mom of Sophie (5 years old with Cockayne Syndrome) and Ellie (2 years old), she feels that this question is inappropriate. Some parents may have no idea whether the condition was passed on by either of them especially since genetic testing can be expensive and the question puts them in a very awkward spotlight. Even if they do have an answer, some parents feel that this is private information they are not comfortable sharing with others. Most importantly, the answer to this question does not matter to a lot of them.
4. “Swerte yan!” Remarks pertaining to how having a child with special needs is lucky are unwelcome. Mommies Pittipat and Vanessa share the sentiments that their children are not charms who will give them luck and prosperity -- they are human beings with their own personalities. According to Pittipat, “We are lucky because God chose us to take care of this precious child. We are lucky because through our daughter, we continue to learn so many things that we would have otherwise not paid much attention to.” Vanessa puts it clearly, “We are lucky to have her, just as she is.”
5. “Sayang” This single word can deeply hurt a parent of a child with special needs. Leira, mom of Joshwa (14 years old with Autism), says, “It is like telling me that he is not good enough and I worry that I’m not doing enough.” Saying this to a parent of a differently-abled child shows a lack of recognition and appreciation of the child. Vanessa says, “I want people to know that her special character is a gift, although wrapped in a different package.”
6. “Maybe you should try this drug/diet/therapy.” A parent of a child with special needs has enough to worry about. Although these suggestions may come with good intentions, it somehow suggests that the parent is not doing enough or making wrong decision for the child. Leira says, “We trust that the decisions we are making for our child are the right ones.”
7. Staring at the child. Although this one does not involve saying anything, it is very offensive and upsetting. For Pring, mom of Bern who was born with microcephaly and has cerebral palsy, “The stares of people speak louder than any words that can ever be said. With words, you know what people are saying. With stares, you feel that you are being judged right away and that hurts more.” Staring is considered rude under any circumstances and for parents of children with special needs, the stares also come off as looks of judgment.
Parents of children with special needs want other people to understand that their children are unique individuals just like everyone else. Instead of the comments and questions above, Pittipat suggests asking questions that will get to know her daughter. If you are at a loss for words, teaching your own child to be kind to and be friends with other kids who are differently-abled will mean more than anything else.