Parenting Kids With Chronic Conditions
When Renu*, 36, an architect in Bangalore, had to leave her son, Arun*, in daycare, the morning after he threw up several times and was unable to eat, it almost broke her heart. Arun’s allergies made him vulnerable to severe digestive upsets. The doctor said Arun would gradually grow out of them, but at two years old, his allergies were still intense and a source of great stress.
“We’d both exhausted our sick leave and our goodwill at the office,” Renu remembers. “I had site visits to make, client meetings that day. My husband’s job involves a lot of travel. Despite our having reasonably understanding employers, taking another day off would have been impossible for both of us. And yet, I felt terrible about leaving Arun alone like that.”
Later that day, Arun developed a fever and had to be hospitalized.
“I must have experienced every kind of anxiety and stress in the weeks that followed,” she says.
Arun recovered, but Renu decided to quit her job rather have to make such a difficult decision again. But even two months later, she says she still doesn’t find it any easier.
Raising a child, even in the best of times, can involve a fair share of challenging moments. Parenting a child who is routinely ill or dealing with a chronic condition, while juggling your own career and domestic duties, can be even more demanding, draining you physically and emotionally.
There’s no instruction manual for any of this. But if your child’s health is a constant concern, read on for some tactics that can help you navigate these difficult, growing years.
DON’T AIM FOR PERFECT
Maintaining a positive outlook even in the face of turmoil and change is extremely important while parenting a sick child, says Dr Neerja Thergaonkar, a consultant rehabilitation psychologist specializing in children and adolescents, based in New Delhi. This involves facing up to some home truths.
“Get rid of the notion of being the perfect parent,” she says. “There is no such thing. All parenting is a process of trial and error, so it can be unfair to blame yourself every time something goes wrong. Keep telling yourself that you are doing your best in a difficult situation.”
It’s important to not blame your spouse either, she advises. Save your energy to deal with the issues that really matter.
FOCUS ON WHAT YOUR CHILD NEEDS, NOT WHAT PEOPLE THINK
Chronic illnesses and conditions often come with emotional repercussions.
Padma* first noticed several white patches on her daughter Akshaya’s* arms, legs and face when she was a year old. By the time Akshaya* – now 6 and in first standard – started school, the patches covered her hips, ankles and neck. Soon, clumps of hair started turning white. A dermatologist diagnosed vitiligo, a disorder in which some areas of skin lose pigmentation; its cause is unknown.
“The condition doesn’t cause any ill-health, apart from the precautions you need to take against sun exposure, but it can be very difficult to bear socially,” says Padma. “Everywhere we went, Akshaya would get stared at a lot.” Some children even refused to sit next to Akshaya or touch her, for fear her vitiligo would spread.
When Akshaya refused to go to school, Padma was tempted to let her stay home for a day or two. But she knew hiding was not the solution her daughter needed.
“I wanted her to believe in facing problems,” Padma said, “so I insisted that things would get better only if she held her head high and returned.”
Padma also recruited the teacher’s help to explain to the children vitiligo and that it is not contagious. Gradually, Akshaya made friends and today, she enjoys school as much as any other child.
EDUCATE AND TRUST YOUR CHILD’S TEAM OF CAREGIVERS
When it comes to dealing with prolonged illness or chronic condition, it is impractical and unwise to expect to handle it alone. You need to recruit the help of not just specialists and support groups (where these are available), but also, the people who make up your child’s day-to-day world, from hired help or extended family at home, to babysitters, teachers, friends, the school nurse or medical team. Every responsible adult in your child’s life should be briefed about your child’s needs so they can be alert to symptoms and handle challenges or emergencies.
Nine-year-old Rakesh* suffers from severe asthma, which causes immense breathing difficulties, especially at night.
“I’ve asked his teachers to be alert to signs of labored breathing or a sudden spate of prolonged coughing, which is a sign of an attack,” says Mona*, his mother. “If such a situation arises at home or in school, caregivers know that medication has to be administered.”
Mona says she also often communicates with teachers if Rakesh has had a poor night’s sleep due to asthma, so he can be excused from gym class or demanding activities.
SET RULES WITH YOUR PARTNER
Enforcing discipline can be a Herculean task when parenting a child who is chronically ill, especially if well-meaning family and friends have taken to indulging your child’s every whim.
How do you ensure basic discipline and balance that with the natural need to indulge? It helps for both parents to be on the same wavelength, to present a united front to the child, says Dr Thergaonkar.
“Make rules together,” she says. “Be firm, yet gentle and consistent in enforcing these rules.”
Offering praise and positive reinforcement, such as hugs, for good behavior helps, too.
ENCOURAGE YOUR CHILD’S INDEPENDENCE
It’s never easy to see your child in pain or difficulty, without feeling an overpowering urge to rush to his aid. But parents of children who are frequently ill or dealing with chronic conditions tend to be more emotional, nervous and panic more often, says Dr Thergaonkar.
“Despite your natural anxiety, quell the urge to be a helicopter parent who constantly hovers over her children, not letting them fend for themselves,” she says. “Minute-by-minute monitoring of their lives will not allow for proper development. It’s important to step back and allow the child to be. Giving your child adequate space and allowing for free, unmonitored playtime will help him/her grow more independent, confident and creative.”
MAKE TIME FOR SIBLINGS
Children with a chronic condition often require more time and attention, which may leave siblings feeling unintentionally side-lined.
If you have other kids, be sure to set aside time every day or week that you can spend exclusively with them. This will help prevent resentment and foster a more supportive, loving family atmosphere.
DON’T NEGLECT YOURSELF
When stressed, we tend to neglect ourselves in favour of addressing the emergencies that require our urgent and immediate attention. Making time for yourself, even in the midst of stressful situations is critical, says Dr Thergaonkar. Set aside some quiet time, even if it’s only 10 minutes in the morning, to collect your thoughts, she advises, or take a solitary walk after lunch. Do whatever it takes to help insulate you from the stress and hassles of the day. For many, this may mean making lifestyle changes in order to carve out space for themselves.
SEEK THERAPY IF ANYONE NEEDS IT
Therapy comes in many different forms. Art therapy, especially under the guidance of a qualified professional, can be life-changing.
“Children seldom like a formal atmosphere, so they can’t really be expected to sit and discuss their problems,” says Thergaonkar. “However, through art and free play, they can express themselves and give us an idea of what they’re thinking and feeling.”
She adds that art therapy, as well as more traditional therapy, can also be a great way to help parents cope.
“When it comes to raising a child with a chronic illness, even if it’s just a rather benign and niggling health problem, one must always accept that for every good (or easy) day, there will be several trying, frustrating times, too,” Renu says. “The sooner you realize and prepare for this, the easier your burden will be to bear.”