PARENTS TAKING ACTION

Subtitled Putting things into New Perspectives

By: Petra Anic, Phd, Psychologist

Expecting and finally having a baby is probably amongst happiest periods and moments in every parents’ life. However, news about having a special needs baby, prenatal or immediately after birth, often isn’t perceived as such. This is common and understandable. Probably, no one wishes extra burden that parenting special needs child brings. Scientific studies confirm this: experiences of prenatal diagnosis of fetal anomaly were described as devastating (Lalor, Begley, & Galavan, 2009), parents reported feelings of grief, denial, disbelief, shock, sadness, anger and similar (e.g. Chaplin, Schweitzer, & Perkoulidis, 2005; Menahem & Grimwade, 2005; Statham, Solomou, & Chitty, 2000). Guerra, Mirlesse and Baião (2011) recognize this as a typical path in reaction to bad news: shock or disbelief, denial, revolt, argument, sadness or depression and finally acceptance.

All of the stated above is also typical for parents of children with Down syndrome. Down syndrome is the most common chromosomal condition with known genetic cause, with an incidence of between 1:750 and 1:1000 live births. Finding out that you, as parents, are in this group, in this statistic, could be terrifying and paralysing. All kinds of feelings are mixed, from joy to sadness, anger, even depression. People ask themselves “Why me?”, “What did I do wrong?”, “Did I cause this somehow?”

Many studies examined parents’ reactions to the news about their child having DS (e.g. Skotko, 2005; Sooben, 2010), showing that many parents report they were anxious and frightened while very few of them said that the experience was a positive one. In addition, many parents report about dissatisfaction with perceived staff insensitivity, withheld information or that professionals lack recent information about the diagnosis. Parents report about different treatment from medical stuff: from being put in the room alone to not encouraging breastfeeding, because their baby wouldn’t be able to do it anyway. For all kind of reasons, parents are mainly left to deal with the news by themselves. Child is taken away, for an extra medical care often needed after birth, and parents are left in the dark. Later, when doctors come to talk with them, most don’t have anything nice to say. All they talk about are limitations a child will face, obstacles he or she wouldn’t be able to cross… There are all sorts of inabilities, and nobody is even mentioning abilities. For some parents, this is devastating, leaving them with depression and inability to act. This alters their approach to the child. If we have low expectations, or even worse, no expectations at all, we won’t make any effort to achieve anything. It is paralysing, and the whole family suffers. The child is put in a box of “no ability” and it can’t get out of it without our help. We need to find a way to adapt to a new situation, to protect and advocate for our child, and to maintain healthy relationships with family and friends.

Mothers’ adjustment (as mothers are mainly primary carers) along with mother-child interactions, mothers expectation from child and forms of external support for child and the whole family are crucial for child development (Pimentel &Meneres, 2003).

One of the recent studies (Korkow-Moradi, Kim, & Springer, 2017) looked detailed into maternal adjustment to DS diagnosis. It revealed four major themes: initial reaction (feelings of fear, sadness, anger, grief and guilt / questioning themselves), barriers (medical professional biases; and not-knowing – difficulties in trying to anticipate what their lives would look like), buffers (partner influences, becoming an advocate, sibling relationships and extended family support) and new perspective (learning, growth, benefits of the child and encouraging advice).

In order to explain adjustment process we need to take a detailed look at the buffers and development of the new perspective. Advocating for a child, ensuring that he or she gets the best care and opportunities possible, helps mothers to transit to new perspectives. Similar advocacy can be seen in sibling relationships, where their siblings show care, compassion, protection, as well as sensibility for other people with disabilities. Finally, important buffer is family support, where sharing of emotions with other family members helped mothers to make sense of the diagnosis. All these buffers should help mother to get new perspective, finding a sense of diagnosis and ways to live with it. Furthermore, mothers are reporting that they become open-minded and learn things they would never learn if it wasn’t for their child with DS, as well as making them overall a better person. Finally, all of the mothers in this study expressed encouragement for other mothers who are just starting their process of adjustment to diagnosis, by assuring that their lives was just as any other lives, only with greater appreciation for children achievements because there is much more effort invested in it (Korkow-Moradi, Kim & Springer, 2017).

There are so many ways in which we can help our children to become valuable and equal parts of our community, but we need to act. There will be so many obstacles, starting with medical stuff in the hospital saying that our child won’t be able to do most of the things others do. If we believe in this, they sure won’t be able to do many wonderful things. It is self-fulfilling prophecy. We should not let their words to paralyse us. For us to be able to do that, we need to feel good. We need good coping strategies, support from family and environment. Scientific evidence is pretty clear on this: asides troubles and efforts, families do benefit from raising and living with children with DS. Recent studies show that siblings of children with DS report many positive qualities, as well as higher life satisfaction and future career pursuits in helping professions (Cuskelly & Gunn, 2006; Orsmond & Seltzer, 2007; Skotko & Levine, 2009). Having a child with disability can even give families a sense of resilience rather than harming them (Bower, Chant & Chatwin, 1998). To conclude, we need to make more effort, as parents, as community.

References:

Bower, A., Chant, D., & Chatwin, S. (1998). Hardiness in families with and without a childwith Down syndrome. Down Syndrome Research and Practice,5(2), 71–77. doi:10.3104/research

Chaplin, J., Schweitzer, R., & Perkoulidis, S. (2005). Experiences of prenatal diagnosis of Spina Bifida or Hydrocephalus in parents who decide to continue with their pregnancy. Journal of Genetic Counselling, 14, 151–162.doi: 10.1007/s10897-005-0488-9

Cuskelly, M., & Gunn, P. (2006). Adjustment of children who have a sibling withDownsyndrome: Perspectives of mothers, fathers and children. Journal of IntellectualDisability Research, 50, 917–925. doi:10.1111/jir.2006.50.issue-12

Guerra, F. A. R., Mirlesse, V., & Baião, A. E. R. (2011). Breaking bad news during prenatal care: A challenge to be tackled. Ciência & Saúde Coletiva, 16(5), 2361–2367. doi: 10.1590/S1413-81232011000500002

Korkow-Moradi, H. Kim, H. J. & Springer, N. P. (2017). Common Factors Contributing to the Adjustment Process of Mothers of Children Diagnosed With Down Syndrome: A Qualitative Study. Journal of Family Psychotherapy, 28(3), 193-204, DOI: 10.1080/08975353.2017.1291238

Lalor, J., Begley, C. M., & Galavan, E. (2009). Recasting hope: A process of adaptation following fetal anomaly diagnosis. Social Science and Medicine, 68, 462–472. doi: 10.1016/j.socscimed.2008.09.069

Menahem, S., & Grimwade, J. (2005). Pre-natal counselling-helping couples make decisions following the diagnosis of severe heart disease. Early Human Development, 81, 601–607. doi: 10.1016/j.earlhumdev.2005.02.001

Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with autism orDownsyndrome: Effects on adult lives. Journal of Intellectual Disability Research,51, 682–696. doi:10.1111/jir.2007.51.issue-9

Skotko, B., & Levine, S. P. (2009). Fasten your seatbelts: A crash course on down syndrome forbrothersand sisters. Bethesda, MD: Woodbine House, Inc.

Sooben, R. D. (2010). Antenatal testing and the subsequent birth of a child with Down syndrome: a phenomenological study of parents’ experiences. Journal of Intellectual Disabilities, 14(2), 79–94. doi: 10.1177/1744629510381944

Statham, H., Solomou, W., & Chitty, L. (2000). Prenatal diagnosis of fetal abnormality: Psychological effects on women in low-risk pregnancies. Best Practice & Research Clinical Obstetrics & Gynaecology, 14, 731–747. doi: 10.1053/beog.2000.0108

Whitten, M. S., & Joe, S. (2013). Prenatal testing for Down syndrome: A new resource and anational plan. Global down syndrome foundation research and national down syndromecongress, Denver, Colorado, Children’s Hospital