The common challenges of parenting are compounded for parents of children with special needs. Among the many challenges they face include “breaking the news” at the point of diagnosis, which is done in a cold and insensitive manner as if the child had given birth to is inhuman.
This what we experienced with the birth of our son which was supposed to be one of the happiest moments in our lives. However, we were robbed off this elation by careless medical personnel who attended to me after giving birth. They turned what was to be a happy occasion to an intense and infuriating moment. Unfortunately, such is the treatment parents of children with disabilities have to face daily.
In my case, I found out at the birth of my son that he had Down Syndrome. There was “no congratulations on your baby boy!” Instead, I was told that “he has certain signs of babies with Down Syndromes and that tests will have to be done to confirm the diagnosis”. At the same time, I was supposed to be okay and happy, nurture and feed my baby.
Apart from the medical personnel impersonal bedside manner, their use of complicated medical terms when explaining to patients who are struggling to come to terms with their new situation aggravated matters.
Trying to understand the disability is a huge challenge on its own. Still, things get worse when one cannot access the necessary information; making the journey even more arduous. Generally, the disability journey is very confusing and emotionally, financially, psychologically and socially stressful.
What compounds the heavy load is having to cope with the emotional and physical demands of caring for an individual with a disability. Similarly, the lack of support from family and friends in raising an already demanding child places more strain on parents. These challenges normally manifests themselves between the parenting couple if the load is unequally shared. As mothers, women have no option but to take care of the children, regardless of having a disability or not.
Sometimes, women don’t get the support even from their partners, which leads to tense relations between couples. Unfortunately, many marriages collapse due to stress associated with raising a disable child, with some marriages ending in divorce.
Parents have to find a way of surviving and raising the child to the best of their ability. Undoubtedly, the journey of raising a child with a disability can be traversed successfully with a supportive partner and an encouraging network of friends, professionals and colleagues.
It may be hard to raise my child with a disability, but that doesn’t mean he is a curse or a burden, he is a blessing. He deserves love, kindness and respect. So,no matter what a child’s diagnosis is, he has a lot of obstacles to overcome in this world, and our support can only help fuel his confidence.
Dr Cathy Makobe