I used to teach a student during the penultimate semester of my university. That student had a sister who was only four years old. She was very adorable and had an aura of heavenly innocence. Anyone would like the little girl on meeting her, but not many realised the harsh reality of her life.
The reality was that this charming child could not speak properly. The parents of that child are very decent people. Despite their decency, I saw the mother on a number of occasions behave badly with the child. In the beginning, such behaviour disturbed me a lot as I thought parents should never behave badly with their children, no matter how they were. Later on, when I contemplated the matter, I came upon some realisations which are usually not taken into consideration in our society.
The most important realisation is that patience also has its limit. Humans must be patient, but at the same time, it is true that they also have a threshold. When the level of patience necessary to cope with a situation goes beyond the limit, people really find it difficult to keep their shirts on, owing to an inability to endure the pain. The same goes for the parents of specially-abled children.
We often bark up the wrong tree to solve a problem. This is also true when it comes to dealing with a specially-abled child. In order to truly empower the specially-abled children, we need to empower their parents first. And to empower them, we need to understand and talk about the mental trauma these parents go through and make them realise that every child is gifted and special in their own ways.
Life tests humans in different ways; some of the tests are easy while some of those are really tough to overcome. One such difficult situation is when you have a physically/mentally challenged child. The parents just cannot ignore them. Sometimes they feel really disappointed at their own helplessness against the will of nature. Despite the fact that some parents get their smiles back after going through necessary medical treatment, many of them need to stand the test of time in case of a poor prognosis.
According to recent statistics, the total number of disabled people in the country is about 24 lakhs, one-third of which are children. However, estimates by non-government organisations claim this number to be around 15-16 lakhs. This means that around 0.1 of the total population are children with special needs. Apart from the physically and mentally handicapped, there are also children with visual, hearing and speech impairments.
Parents having specially-abled children react in different ways, depending on how much they are concerned about their children. Some parents react in a controlled way and consequently take pragmatic decisions, while some others feel perplexed, pondering over the fact that their child's disability might affect the entire family.
Again, sometimes the parents feel really miserable thinking about the shattered dreams they weaved for the child, if the child does not show signs of improvement or recovery. Even these parents always play it close to their vest as there remain feelings of blame – directed towards themselves and other people – as well as fear about the future.
Parents' feelings can be influenced by how the child's condition affects other aspects of life – it could have an impact on your work, social life, or even the amount of time you can spend on personal interests or hobbies.
As with any family, the amount of support they have from others, such as life partner, family and friends, also affects how the parents feel. The parents may face this whole range of emotions and this is warranted. But, the bitter truth is that some parents really cannot withstand the pain of patience. And believe me, it is absolutely okay to feel a bit on edge sometimes.
However, the pain is further aggravated by social stigmas prevalent in our society and the way people treat families having specially-abled children. It gets especially ugly and tough for the mother as relatives leave no stone unturned to put the blame on the mother.
Moreover, the society and the denizens bereft of good sense often look at these families with raised eyebrows and knock the wind out of their sails by throwing discouraging and derogatory words.
People often forget that their disparaging remarks ruffle the feathers of the parents. Some also try to ostracise these families. Such a mindset must be discouraged and faced with girt as others' inability to consider the mental state of the parents and the child through a different optics does not make an aberrant attitude acceptable.
Part of the tension also stems from an uncertain future that jeopardises the cognitive growth of specially-abled children. Parents need to inculcate it in their heads that everyone comes with some abilities, we just need to figure them out and focus on nurturing those. Parents need to always remember that, just like the dark unfathomed caves of ocean bear gems, their son/daughter is also a flower that has the potential to blush and bloom.
The good news is that negative perspectives are morphing into positive notions. Society has, of late, started taking notice of the specially-abled children with a positive outlook as nowadays many NGOs and other institutions are straining every nerve for the inclusion of these specially-abled children into the mainstream society and to ensure their economic empowerment. These organisations need to zero in on the parents first and enlighten them by diffusing knowledge related to rearing such differently-abled kids. If done in the right ways, the parents will feel encouraged to prepare their children in the best ways so that they can put their best foot forward when it is time.
In the meantime, the parents (especially those with little education from the rural areas) must believe that specially-abled children are savants who might have a mental/physical disability or learning difficulties, but are extremely gifted in a particular way, which needs to be explored. Meanwhile, if you as an acquaintance cannot spare a few kind words that will take the edge off the mental pain parents endure, at least do not demoralise them.
Md Morshedul Alam Mohabat is a philomath who likes to delve deeper into the human psyche with a view to exploring the factors that influence it.