The Book

Every parent dreams of having a perfect child - a perfect, healthy child who could take after dad, or have a personality like mom, who would go to school, grow up, fall in love. However, when their child is diagnosed with special needs, their dreams, hopes and expectations come to an abrupt end. Parents are forced to adjust to a whole new emotional terrain while struggling to meet the needs of their child. Overwhelming grief, anger, denial and injustice take the place of what would have been a joyous celebration. "Why me?" they question, "This is not what I asked for. How can two perfect parents produce a less-than-perfect baby?" In time, they learn to wear the hats of a doctor, therapist, playmate, motivator, not least of all, a mother. Amidst the tremendous emotional upheaval, society's discomfort with the disabled will not go unnoticed by new parents of a special-needs child. The fixed stares, heartless sneers and judgmental glares is a pain they will have to bear with an acceptance that sometimes, even with all their love, they cannot protect their child from other children on a regular day at the mall or th e beach.

One way of coping is through sharing stories with other parents of special needs children going through similar ordeals. They may speak about their guilt, being misunderstood, or even embarrassment. Such sharing sessions are often safe havens at which parents may express their true feelings without fear of reprisals, and learn that not being able to 'fix' your child as mom and dad is okay. One is reminded of the power of sharing - that although it may not lessen your pain, but the walk together means that you are not alone. Through comfort that is found in the words of others who have shared similar experiences, parents can find their inner strength and external support to face their profound loss.

Ultimately, each story will stand as a testament to the strongest bond of all - that of a parent's love for their child. Parents who have reached a level of acceptance of their child have much joy, wisdom, and insights to share into an often hidden emotional world. In each story, parents will readily identify with other parents and take comfort in the knowledge that they are understood, perhaps not by society at large, but by an exclusive group of caregivers, professionals and most obviously, other parents. They will seek comfort in being understood that every battle fought is a worthy one, every triumph a deserving celebration and that in every child, beauty resides. Even if time does not heal all their wounds, they find it in themselves to still get along with a life fully filled. Wrote one parent, "I have given myself a pat on the back, knowing I am not perfect, nor is my son... (it is not always easy) but at the end of the day, I have a wonderful, funny child who is a little slow at times," and does not hesitate to add that she sometimes allowed herself to laugh in the privacy of her own safety.

Many stories on parenting special needs children have been written by westerners. Although these books deal with challenges parents will face, they offer different parenting perspectives from the Asian culture. For example, Asians tend to attribute a child's disability to supernatural influences or past sins committed by a late family member. In addition, feelings of shame and obligation towards the child frequently lead to resentment. Furthermore, reluctance to openly acknowledge the difficulties of raising a special needs child often aggravates a parent's emotional isolation. There is a dearth of stories on the emotional heartaches, lack of understanding and desperation that these parents and their special children face daily, as well as the spiritual strength and clarity that some choose to face their lot in life with. Such a book would b e useful in Singapore where many parents do not receive adequate support in their journey with a special needs child.

In the past decade, there has been a shift in emphasis from understanding the needs of the child to a more holistic view of the child's development within the family unit. Parents are more aware of the positive influence they have and are assuming a more active parental role. However, despite parental support becoming more prevalent in Singapore, special needs parents are not within the mainstream purview of family help. Rather than being offered information, new parents are often forced to seek it out at a time when they have to attend to their child, and themselves. Without time to grieve for the loss of their perfect child and with the immense demands thrust so suddenly upon them, parents are prone to depression and chronic sorrow. This book aims to firstly empower parents with general knowledge on what to expect from life with a disabled child. It will be a source from which not only parents, caregivers and professionals, but also the general reader, can draw emotional support and inspiration. Through the honest sharing of personal journeys, it hopes to reach out to other parents to convey the message of strength and faith, love and reconciliation.