Every parent has high hopes for their child at his or her birth. But what happens when the child is diagnosed with a special need? How can parents cope with the news?
“No parent expects their child to have any special need, just like most of us don’t expect to have cancer. The news will hit hard,” says Tan Soh Hiang, Counselling Manager at Focus on the Family Singapore.
Parents go through a process similar to the grief and loss cycle. Tan describes this as “different stages with recurring emotions of doubt, denial, anger, self blame, guilt, sadness and finally acceptance.” This process, she adds, could take weeks or even years, and each person’s experience of these emotions, and the sequence in which they occur, is different.
However, some parents are relieved when their child is diagnosed. Perhaps they had suspected something was not quite right with their child. And having the diagnosis meant they could start addressing the problem.
Nurture the marriage
Apart from having to deal with grief over their child’s diagnosis, parents have to remember to nurture their marriage. The marriage will probably be under severe stress from the additional financial and emotional cost of having a special needs child.
Evelyn Soh, Senior Medical Social Worker at the National University Hospital (NUH), says, “Marriages which are already at risk can break up, but the child is usually not the main cause. For parents who share a good relationship, with a common goal and the need for each other’s support, the marriage could even be strengthened.”
Soh says that she often hears from parents how they treasure their spouse even more because of the challenges they face together. Tan agrees. “By working together and tackling the challenges together, the couple’s relationship can strengthen as a result. This can be achieved through understanding and accepting each other’s feelings.”
Keep communication lines open
To successfully cope with the diagnosis, parents need to keep the communication lines open. They have to acknowledge each other’s disappointments, hurt and pain without judging or blaming. Be patient if eitheris still struggling to accept the child’s condition.
It is worth bearing in mind that according to recent research, there is no significant difference between the divorce rate of couples with and without a child with special needs.
Parents need to pull together to best help their special needs child. It is vital not to attribute blame. Soh explains that fathers are usually more focused in problem solving and search for ways to help the child to improve whereas mothers tend to ask themselves if they have contributed to the condition during their pregnancies.
“While there may be some elements of hereditary disposition, a child cannot be born unless there is a union of both parents. It is essential for the couple to recognise that the special need child is not the fault of either of the spouse and it is beyond anybody’s control,” says Tan.
As a medical social worker, Soh has met many parents who shared that the presence of the child with special needs caused them to value life differently. The child strengthened the family and also inspired others around them.
Seek sources of support
Janice Wong (not her real name), 37, whose five-year-old son suffers from global development delay and epilepsy, encourage parents to “stay positive and make time to spend together with your spouse”.
Religion and strong family ties helped Wong to accept the news of her youngest son’s diagnosis when he was two years old. At first Wong and her husband were disappointed and sad, but they decided to stay positive and try their best to help their son.
Wong, a Christian, says the couple’s faith helped strengthened her marriage during the trying time. There is also a common understanding within the family to work together to provide the best environment for the child.
Other then religion, parents can seek additional counselling and support from medical social workers in hospitals and also parent support groups in associations like the Singapore Down Syndrome Association and the Autism Association. There are also support groups for children with chronic illness like Dreamcatchers in NUH and Club Rainbow.
At such support groups, parents who have been through similar experiences share their stories and lend much needed emotional support to new parents. According to Wong, the very knowledge that they are not alone in this journey of caring for a special needs child is of great comfort to many parents.
While some parents might think they do not need professional help and that they can cope on their own, it is advisable to seek counselling as it is easy to fall victim to burnout, repressed anger or unprocessed grief. Knowing how to use the available resources is a sign of strength and not weakness, says Tan. And ultimately, as you, the parent, are helped, your child will benefit and be helped as well.