By Angelin Chua, Bright Path Centre Director and Psychologist

Parenting

Parents today face a world of challenges. These challenges range from the basic notion of providing for their children to nurturing and developing their social-emotional selves. As most parents are already aware, parenting is one of the most challenging jobs that one could ever have. It promises a lifetime of devotion and commitment with no leave or remuneration. It requires no prior experience and does not come with any operation manual. It, however, offers unexpected joys and indescribable rewards that nothing else in the world can provide.

Sometimes parenting is made more challenging with the diagnosis of disability. Disability may bring about additional stressors such as financial strain, a sense of a lack of control and a rollercoaster of strong emotions. The journey to face and live with a disability is unplanned for as no parent would wish for his or her child to be sick, disabled or harmed in any way. Disability may affect parental expectations of raising a child; it may shatter dreams that parents may have for their child’s future; it may strain family relations or drive families into a state of chronic stress and crisis.

Common Reactions to Disability

It can be a shocking and traumatic experience when parents learn that their child has been diagnosed with a disability. Parents may go through intense emotions similar to the feelings of people who have experienced major losses in their lives.

Denial

One of the first reactions could be denial where parents may question the diagnosis and query why this is happening. – “This cannot be true!; This is not happening to me!” Denial may be a conscious or unconscious refusal to accept facts, information or the reality of the situation. Denial may translate into anger.

Anger

When parents come to terms with the situation and realise that denial cannot continue, anger may manifest. – “Why me?; This is not fair!; How can this happen?; It is all your fault!” Parents may become angry with themselves or others around them.

Fear

Parents may become fearful as they embark on an unknown path that they have never trodden upon. They may worry about the future and the implications of the diagnosis of disability. – “What does it mean to have Cerebral Palsy? What is Autism? What will my child be like when he grows up?” Parents may fear that the condition may worsen; they may fear society’s rejection; they may fear other people’s views.

Guilt

Some parents may feel guilty or blamed as they question the causes of the disability. – “Did I do something to cause this?; Maybe I did not take good care of myself when I was pregnant.” This phenomenon is especially evident for the parents of children who have been affected by the Shaken Baby Syndrome. Guilt feelings may be influenced by spiritual or religious views. – “This must be my bad karma!; God is punishing me for the sins I have committed.”

Confusion

As parents become exposed to terminologies that they may never have heard before and seemingly endless amount of information, they may become confused when they cannot make sense of all the information that they are given. Their understanding may also be compromised as they experience a concoction of some of the previously mentioned emotive responses. – “What do I need to do for my child now? Where can I find out more about the condition?”

Effective Coping Strategies

Information

• Learn about your child’s condition, diagnosis and treatment
• Find out about the early intervention and special education services
• Identify local and international resources
• Clarify and ask questions with physicians, teachers and therapists
• Prepare for visits with professionals by writing down your questions and concerns beforehand
• Write down the information concerning your child in a notebook
• Be organised and keep all documentation

Acceptance

• Maintain a positive view
• Focus on the present action while planning for a more distant future
• Recognise the improvements in your child
• Be aware of your child’s strengths and weaknesses
• Teach your child and not just take care of him/her
• Set realistic and achievable goals for your child
• Assist your child to achieve the goals in a step by step manner

Family Support

Communicate with your spouse; Share your feelings and emotions

• Understand each other’s approach to parenthood
• Discuss decisions as a family
• Put family’s needs first
• Remain sensitive and conscious of the needs of other children
• Explain the condition to your other children
• Do things as a family
• Play and have fun together
• Seek support and understanding from extended families

Self Care

• Join a support group to share information, emotional and practical support
• Eat and sleep as well as you can
• Maintain spousal relations; Make time for your spouse, go on dates
• Spend private time with your other children
• Recharge so that you can continue to care for your child to the best of your abilities
• Arrange for respite breaks to rest and relax
• Take time for hobbies

Recruit practical help from others

E.g. extended families, neighbours, religious institutions, community and charitable organisations

References

• Brown, C. Goodman, S. & Küpper, L. (2003). The Unplanned Journey When You Learn That Your Child Has a Disability. News Digest 20 (3rd Ed).
• Havens, C.A. (2005). Becoming a Resilient Family: Child and Disability and the Family System. Access Today, Spring 2005- Special Vol, Iss 17. National Center on Accessibility.
• National Information Center for Children and Youth with Disabilities. (2003). Parenting a Child with Special Needs. News Digest 20 (3rd Ed).
• Pector, E. A. (1999). Raising Special Needs Multiples. Obtained from http://www.synspectrum.com/specialneeds.htm.
• Santrock, J.W. (2007). A Topical Approach to Life-Span Development. New York: McGraw-Hill.
• Taanila, A., Syrjälä, Kokkonen, J. & Järvelin, M.-R. (2002) Coping of parents with physically and/or intellectually disabled children. Child:Care, Health & Development, 28, 1, 73-86. Blackwell Science Ltd.