Parents of children with disabilities tend to prioritise their children’s needs and end up making adjustments and compromises in their work life or personal space, and that impacts their mental well-being.
Mothers giving up careers or fathers not taking up promotion at work are some of the most common examples of burying their ambitions, said those working with individuals with disabilities.
Sometimes parents feel they are not even entitled to the smallest degree of recreation or entertainment.
“A lot of parents feel that they are being judged, but most of the time they judge themselves as not doing enough for the child,” said Indrani Basu of the Autism Society West Bengal.
Basu said that many of them tell themselves why they should be happy when they have a child with autism.
“A lot of parents are doing this to themselves, which leads to anxiety,” said Basu.
Autism Society West Bengal last month conducted a two-hour session for the mental well-being of parents and carers, during which they were addressed on the need for self-care and an awareness of self-worth.
During the two-hour session, many parents shared their sense of guilt.
“I feel guilty if I use the time for myself and not for my son. I can use that one or two hours to teach him a life skill or something else rather than spending on myself,” said a mother.
The session was conducted by Ratnaboli Ray, managing trustee at Anjali, a mental health rights organisation.
“Parents give up everything, and it comes from a sense of protection that they (the children) are different, and you have to do everything for them. They feel they must make significant sacrifices, and the sacrifices are dependent on a child’s intensity of disability. They prioritise the child’s well-being over theirs and adjust their careers or reduce their work hours,” said Ray.
A psychotherapist not associated with the organisation said that the socio-cultural construct in our country expects mothers to put themselves on the back burner.
“The mental framework of a lot of women is that they will come last. That focus needs to change. It also happens because there is no practical support system,” said psychotherapist Farishta Dastur Mukherji.
“In a country like ours, where we don’t have services or facilities that can support families, a lot of time goes into aiding and supporting neurodiverse individuals. Depending on the needs of the child, from severe to moderate, the parental involvement with the child varies,” said Dastur Mukherji.
For some parents, the time that the child spends in school or a therapy centre is the only time that is available to them as individuals.
“It is the four to five hours that the child is with us that parents have their me or we time. We encourage parents to talk to other parents because that helps to create a network or support system for them,” said Amita Prasad, director, Manovikas Kendra.
Prasad said that the thought of what comes after them takes a huge mental toll.
“But if they do not care for themselves and put their lives on hold, it will become frustrating for them and they will fail to provide a happy or a positive space to their children,” she said.
At the session at Autism Society West Bengal, Ray used games, music and dance movements for parents and carers.
Physical activity helps them to focus on mental health how to recognise and manage emotions, foster a sense of self worth and how to make social connections, said Ray.
“I spoke about self-awareness. Until and unless you don’t know what self-awareness is, you cannot connect with others, you cannot take care of others,” she said.