For those looking after a disabled child, care is a grueling 24/7 reality. Yet they don’t want sainthood, just a secure future for their child. But without access to meaningful education and employment for the country’s 20 million disabled children, there is little chance of that.
It takes an exceptional parent to bring up a special child. Simple chores assume the proportions of fierce battles and every little molehill feels scaled and feels like a mountain.
GOODBYE CAREER, HELLO CARE:-
It isn’t easy for mothers to give up careers and lifestyles to teach their children how to say hello or use a toothbrush.
In most households with a disabled child, the mother is the primary caregiver and anchor. Most times, the diagnosis that the child is disabled hits her the hardest. A mother also needs to perform the delicate balancing between her ‘normal’ and ‘special’ children, “It’s natural for a mother to be drawn towards the weaker child, but try explaining that to the others.”
DISABILITY DID US PART:-
Marriages can sour under the strain, too. A single mom confessed that her husband blamed her for their daughter’s muscular dystrophy. “He said I had landed him with a liability for life. We split when my daughter was four, my husband is now married again, and has a healthy child.”
If it isn’t the blame game, it is the burden of care. “My wife would care for our son every minute of the day, even sleeping in his room for the first nine years. She blamed herself for his cerebral palsy and was so obsessed with caring for him, she didn’t let anyone else help. I would hardly ever see her.” Finally, his wife saw sense and hired a care-giver to share responsibility. The couple now goes out for the occasional dinner date too.
Stress (emotional, physical, and social), anxiety, depression, self-blame and blaming the partner are not unusual. “Parents of children with a developmental disability often experience grief at the loss of the perfect child.” To be able to handle stress, she suggests parents of special children take up a hobby and regularly spend quality time with their partner. “You need to live your life too as you bring up the child.”
At the end of the day, there is the joy of little things to make everything worth it — a crooked smile, an ability to make eye contact, a bear hug, a misplaced kiss, a limp handshake. While most parents are competitive and pushy, parents of kids with disabilities realize very early on the marker of success or failure isn’t the kid next door or an imaginary set of targets, but a child’s own personal progress.
SYMPATHY? STOP IT:-
In a society driven by the pursuit of the perfect, flaws are most as bad as that other F word – failure. Most parents whom TOI-Crest spoke to for this story admit that the word is a hard place that functions in a Darwinian manner and that few have time, beyond tokenisms, for those slower or weaker than them. “Friends enquire, but I can see it is more out of sympathy than genuine concern.”
“But as parents, we sometimes become ‘handicapped’, because of the strange way in which others behave with them. They don’t need sympathy, just love.”
Children respond instinctively to those who treat them with love. Families learn to surround their child with people who are compassionate. Some relatives became acquaintances while some friends became relatives. Every family recounts stories of the goodness of strangers.
WHAT THE DOCTOR ORDERED:-
Professional help often proves invaluable. “Besides actually providing therapy to the child, working with the family is the next most important of our job.” “Internationally known as family-based intervention, the idea is to provide support to the family so that they can help the child and themselves.” Helpless parents often run from one professional to another, thinking that multiple professionals will help their child respond faster. “That is never the case. Therapy requires both time and patience. In such cases, being part of a support group — where you can share your fears — is always encouraged.”
TIME FOR CLASS ACTION:-
One of the chief sources of concern remains the lack of a good education system for children who don’t fit into mainstream schools. “The best special schools have no vacancies and yes, there are others, but they only keep the child engaged, don’t help in his development.”
“With the new education Act, there might be some hope of integration in mainstream schools, but unfortunately even the special schools are severely lacking.”
“India has made some strides towards education of children with disability by including their rights in the free and compulsory right to education till the age of 14. But it is yet to be implemented.”
“Indian parents always treat a disabled adult like a child. We have bad speech and deformed bodies, but we have the same urges as everybody. However, for disabled people sexual urges are suppressed. It’s still easier for a disabled man to find a normal/disabled female partner, but there’s always a negative attitude towards disabled women. Most disabled women are repressed and suffer from the trauma of not being seen as sexual or even capable of giving emotional love.”
“Everyone has a role. Parents, relatives, friends, and neighbors can all encourage disabled people to meet the opposite sex. Disabled people must experiment, which can only happen if their parents are not over-protective.”
