No matter how many parenting books one may have read, nothing can quite prepare one for being a parent. What is even more difficult is when one is suddenly faced with the prospect of parenting a child with special needs. Over the years, caring for a child that has various kinds of needs and disabilities can impact the mental and physical health of the caretaker which could result in burnout.
What is parental burnout?
Burnout is a stage of exhaustion where a person is unable to effectively carry out their day-to-day activities, says Geetika Kapoor, a rehabilitation psychologist who has worked with a lot of special needs parents and is also the founder of EdEssential, Delhi, which is an advocate of children’s developmental needs in schools.
“It is difficult to be mindful of what one is going through. There are emotional outbursts or numbness, or not having a sense of purpose,” she adds.
However, most of the time, this is not a condition that will continue for years and is at most a temporary phase when parents are exhausted, trying to juggle their roles as providers and caretakers.
Who’s at risk?
If a parent has been shouldering all responsibilities alone, burnout is a possibility. It could also happen to both parents who are overwhelmed and exhausted by caring for one or more kids and have no respite in sight, for years. It can also happen to people who already have existing mental health issues.
“Generally, people who stay exposed to prolonged stressful situations, which invariably require them to stay on heightened alert become vulnerable to burnout. Continuous flight or fight responding does not allow room to take stock of the amount of fatigue being felt. Burnout thus is the result of body’s and mind’s exhaustion due to continuous demands being put on them,” explains Kapoor.
The warning signs of a burnout
“They [parents] usually find excuses for not going to professionals and in turn show signs of struggle and get exhausted balancing the needs of other family members and their own mental and physical needs. And they gradually show signs of clinical depression,” says developmental psychologist, Geetali Saikia, of the Magic Of Intervention, Guwahati.
One can feel depressed, anxious, irritated, exhausted, tired, drained and dominated by feelings of helplessness, hopelessness and self-doubt. It could come along with physical ailments like headaches, neck pain and muscle aches. There could also be a loss of motivation, changes in appetite and sleeping habits. These could lead to the person indulging in excess alcohol, smoking or even drugs to numb the pain.
How to cope
Social unacceptability or indifference may affect how parents cope. They may not be able to mingle with friends and family because they may feel others do not accept their child as he/she is.
While it is not easy to cope when faced with issues of long-term stress, experts say that there are a few things that one must keep in mind. The first thing is to be realistic that it is not a burden to be borne alone. In case one of the parents or both caregivers are unable to look after the child, there must be an alternative. The second is the realisation that this is long-term; it cannot be taken care of by forgetting everything else and just concentrating on the needs of the special child.
“The most important factor would be expressing the concerns to another individual. Building a social support system by talking to other people facing a similar situation is very reaffirming,” says Rakhi Anand, senior consultant psychologist, Apollo Hospitals.
Parents speak
“As the parent of a special needs child, it is a totally different life for people like us. Our whole life is spent in caring for our child and going through various difficult phases with them as they grow,” says Kreeti Mitra Bhatia, parent to 12-year-old Arnav, who has autism (PDD-NOS). She, however, turned her problems into strength and is now the founder of A Special Mom, headquartered in Gurgaon which brings special needs parents under one roof and helps them find support and interact at social functions.
Tania Grover, a dental surgeon from Delhi, whose son Kabir, was diagnosed as autistic with ID (Intellectual Disability), says, “My son who is now 15, had delayed milestones from birth and when we got to know that he had special needs, it was a life-changing event for us. Of course, I had to give him priority and I left my job to look after him full-time.”
For her, the burnout phase came when for a couple of years, she isolated herself from family and friends, “However, my husband, supported me and that took care of my depression and burnout. It also helped that we had another child, a few years later, which has been a source of comfort and happiness,” she adds.
Another parent, Minal Sharma, an Android lead engineer in Disney, who lives in Texas, says she moved to the US and hoped that her son would fare better, as she realised that the school system in India was not very conducive to a special needs child.
“I coped by taking things day by day, never living in the past or future, and trying to do things that helped me, such as gardening, which was like therapy to take away my negativity. It helped.”
Art, meditation, yoga, changing one’s goals in life, seeking a slower pace and acknowledging what’s happening to you, can also be effective ways to cope and prevent burnout, says Indu Chaudhary, mother of Yajat, 14, who is autistic with ID. The former Zee media producer who is now a teacher says she felt that she evolved and her life’s goals had changed for the better. “I can say my choices of dealing with the inevitable destiny have made me happier and enabled me to cope with this sudden change we were faced with. Life is looking up now,” she says.
