Parenting is a challenging task under any circumstances. However, when a child is born or diagnosed with special needs, parents or their primary caregivers can face with even more unexpected challenges. SPD’s senior social worker, Junaidah Baharawi, highlights some of these challenges and suggests ways to overcome them.

Challenges

Parents of special needs children have to deal with a number of challenges and one of them involves managing the physical demands of the child’s condition. They also need to understand and manage the child’s emotional needs as well as their own. Although their experiences may differ, many parents have similar emotional dynamics. Therefore, parents have to be aware of the various emotions involved, learn how to address them and realise that their experiences and feelings are normal.

Parents may grief the loss of the ‘perfect baby’. They could be filled with a sense of inadequacy because they feel ill-prepared to cope with both their ‘loss’ and the child’s disability. Parents could feel anger towards themselves or the child for the condition, and overwhelmed whilst managing the child’s various medical appointments or when administering medication. There may also be a sense of guilt for the child’s suffering or in the inability to protect him. Depression and resentment towards others with ‘normal children’ may arise, causing them to avoid interaction with others before the feeling of isolation sinks in.

How to cope

How do parents cope in such a situation? Folkman (2010) mentioned that the relationship between hope and coping is dynamic and reciprocal. Each in turn supports and is supported by the other, particularly in managing uncertainty and coping with a changing reality. One way for a person to have hope during challenging times is to have goals. With goals, parents would be able to focus on their child’s achievements, however tiny these successes are, such as being able to drink two sips of milk instead of one. Over time, as the child and his/her parents absorb more information and their implications, they would in turn begin to formulate more realistic expectations and shift their focus from hoping for unrealistic outcomes, such as a cure, to hoping for more plausible outcomes, such as hope in living longer than expected, being well cared for and supported, having good pain and symptom control, and hope of getting to certain milestones.

Adler (Ansbacher & Ansbacher, 1964) introduced the term ‘organ inferiority’ to explain his view of looking at disabilities. It refers to one’s internal frame of reference that determines the significance of events and life forces. Adler further concluded that the responsibility of failure cannot be placed completely on hereditary or physical conditions. He believes that it is the method of educating the child that must shoulder the burden of failure not a child’s physical disability. In other words, the better the training received by the child, the greater the hope for the child’s ability to contribute and belong to society. Hence, parents must refrain from overindulging or overprotecting the child, as such behaviour can take away the very experiences that will help the child adapt to life successfully.

Besides that, various literatures have suggested a myriad of ways for parents to cope. One of them is to find a support system by meeting and interacting with other families of children with special needs. Learning from one another can be very empowering for the parents as they go through similar journeys in caregiving. They need to surround themselves with nurturing people that are accepting of the child and parenting choices. It is also helpful to equip themselves with the relevant knowledge and skills in taking care of their children, via books, the Internet or engaging in active discussions. Utilising religious or spiritual resources or beliefs could also be helpful.

Conclusion

Other than providing unconditional love, parents should learn to accept the child for who he/she is, identify what the child has instead of what he/she lacks, as well as to acknowledge the child as an individual who may have different life goals. It is also important to focus on the present instead of the future, as the saying goes ‘It is the journey that counts, not the destination’. Parents may need to gain an understanding that their life is about change and that they will be facing a range of different challenges related to their children. It is also important for parents to accept the need to take care of themselves.

Recognising the challenges that parents of special needs children are facing, SPD has introduced a Parent Support Group (PSG) targeted at parents and caregivers whose children are in the Early Intervention Programme for Infants and Children (EIPIC) . The PSG is a five-session programme held at SPD’s Building Bridges EIPIC Centre in Tiong Bahru and Jurong. Facilitated by trained social workers the PSG not only provides support and respite for parents and caregivers, it also aims for all in the group to form friendships, share information and knowledge, and more importantly, for them to know that they are not alone in the caregiving journey.

References

Folkman, S. (2010) Stress, Coping and Hope, Psycho-Oncology, 19: 901Â 908, Wiley Online Library, Canada.

Snell, S. A. and Rosen, K. H. (1997) Parents of Special Needs Children Mastering the Job of Parenting, Contemporary Family Therapy, 19 (3), 425-442, Kluwer Academic Publishing, USA.

Yura, M. T. (n.d.) Raising the Child with Special Needs, Individual Psychology: The Journal of Adlerian Theory, Research & Practice, University of Texas Press, USA.