On being the parent of a disabled child

 

As a parent, we want our children to be successful, to grow up healthy and happy. Especially in Hong Kong, parents are busy planning for early learning and kindergarten admission before the child is even born. Parents are naturally filled with hopes and dreams for their child’s bright future when they are expecting. However, some children do not make it to our world while others experience brain injury due to a difficult birth. Yet others experience genetic mutations which lead to various degrees of disability. These children fight for their life since they come into the world (or even before that!) and thrive in their own way. Some children contracted life-threatening diseases or become caught in fatal accidents which the survived but can no longer function like before. Of course, there are different degrees of brain injury. Some children with congenital brain malformations or acquired brain injury develop smoothly and are no different from typical developing children. They respond typically to training and live a ‘normal’ life as an adult. Yet, everyone has his/her own story. Not all brain-injured individuals can “be healed” or “recover”. Are those living with multiple severe disabilities and chronic diseases like epilepsy losers? Are those who are “healed” and become “normal” the winners? Many things are not in human’s control. A child’s recovery is not entirely the result of parents’ efforts (not saying that the parents haven’t put in efforts but their efforts are but one of the many factors). Children also work very hard. By the same token, it’s also not the parents’ or healthcare professionals’ or the schools’ or the therapists’ faults when a child continues to be disabled. Sometimes everyone involved has done enough, just that some conditions are extremely torturing. Can we not let these children be children and parents be parents? Must we aim for normality at all cost?

 

Some typically developing children became disabled due to accident, while others are born with all sorts of health challenges. The children in parents’ dreams are gone. All the plans parents have with their children, all the things that parents were going to do with the child may never happen. In front of the parents is a non-responsive child with all kinds of tubes and lines running through his/her body. This is a heavy blow to the parents. A mixture of emotions including guilt, avoidance, sadness, anger may erupt, followed by depression and the eventual acceptance. The process may take a couple of months or a parent’s lifetime. Nevertheless, it’s absolutely normal to find positive emotions missing in the early days. In face of such adversity, the strongest and most resilient person would need time to adjust. God doesn’t only choose the strongest person to be parents of disabled children. Good things and bad things come to us unannounced as they should, leaving parents no time to prepare themselves for the upcoming challenges (hence I sometimes contest to the saying that “God will only help those who are prepared”. Those who are prepared may fare better at times, it’s unkind and wrong to blame those who are unprepared. Only very few parent carers have prior experience of caring for a disabled individual before they have their disabled child. There is no reason for a parent to prepare him/herself for caring of a disabled child like there is no reason for an average mobile middle-aged adult to practice walking with a cane).

 

In the series of unfortunate events, it’s not difficult for parents to fall into an emotional abyss. How do they get out? The answer is acceptance. Acceptance is a broad term. Acceptance isn’t giving up. Perhaps we can look at the difference between acceptance and giving up. I personally believe it’s essential to accept the child. Accept that the child is an individual human being, that he/she has the rights to be human (personhood), and that I will accept the child’s disability is an integral part of the child. Should a parent spend his/her entire life to correct the child’s disability, or assist the child to achieve what he/she wants to do in his/her own way? Children CAN live with their disabilities. The important thing is that parents need to stand with their children. Imagine being the child where your parents are your world, but your world finds your disability unacceptable, and you find yourself unlovable because of your disability. Is that a life you want? Now come back to the parent’s place, do you think a child is living well with his/her parents finding his/her disability unacceptable? In talking about acceptance of our child’s disability, I would like to highlight that medical errors, professional stigmatization and discrimination of the general public remain unacceptable.

 

What then is giving up? Is refusal to pursue treatment proposed by the hospital giving up? Is the hospital is only correct answer? Is not spending life savings to allow our children to pursue the most miraculous cure giving up? Is taking a break when child is resting giving up? Is not packing a disabled child’s schedule full giving up? Is letting child have designated play time which serves no training purpose giving up? Is it giving up if the parents don’t push the child to “overcome the disability” when the child is very close to becoming “normal”? Everyone has his/her own answer, and these decisions are very personal. As parents of disabled children today, there is an explosive amount of information and choices. In this multitude of options, none is absolutely right (or absolutely wrong). There is only the best option FOR THE FAMILY after careful evaluation of the option’s pros and cons. These choices cannot be made by others. When I say parents should work on their inner strength, I’m not saying the parent should study for a medical or child psychology degree, or become a healthcare professional or some kind of an expert. Parents do need to become experts. They need to be an expert in their child, an expert in their family! Only family members are qualified to evaluate any options that will affect the child and the family. Inner strength is the mental and emotional capacity and confidence needed in making such choices and decisions. Other people’s approval has no place in this. 

In the past few years, I have witnessed parents’ worlds collapsing upon a child’s diagnosis. Strong negative emotions at the time of diagnosis is inevitable. How do parents pick themselves up to take on the long journey with their children? Specifically, how should parents face the diagnosis? Should time and energy be spent on contesting the diagnosis? Or use the diagnosis to obtain all necessary treatment and therapy support for the child? Should the family refuse disability allowance and rehabilitation services because it’s hard to stomach the fact that the child is disabled? Or use the resource to make life easier for both the family? Should parents always place the child above themselves? Or they can pay attention to their wellbeing too? The answer is in you.