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Parenting children with chronic illnesses is a challenge that many Indian moms face. Take heart from these parenting tips and stories.
By Nayantara Mallya
Parenting is not for the faint-hearted, and further challenges arise when a child’s medical condition needs extra care. The restrictions imposed by children’s chronic illnesses affect family dynamics, parenting, sibling relationships and school matters.
Rhea Pais*, from Bangalore is mother to four boys. Her second son, Matthew*, aged 10, suffered his first epileptic attack at age 3. Fortunately, his condition is under good control with medication, with only 3-4 more seizures since.
“Matthew’s doctor has vetoed swimming as hazardous, as his seizures involve loss of consciousness. The number of children in a typical swim class makes it tough to consistently maintain one child’s safety”, explains Rhea. Rhea diplomatically handled Matthew’s resentment that his elder brother could attend swimming class. Matthew swam in a shallow pool under her watchful eye and worked it out of his system. He confessed that swimming wasn’t very exciting after all!
Priya Kumar* is mother to two sons. The younger 11-year old Krish* has asthma and eczema. His periodic acute flare-ups of eczema in Bangalore are triggered by dietary and climactic factors. “We exclude pizza and chocolate from his diet and are constantly alert about everything he eats at home and outside. You can imagine a child’s feelings when he has to repeatedly forego chocolate”, says Priya.
From the fabric type to length (full sleeves and trousers to cover sensitive skin), Krish’s clothing options are different from his friends and he feels it acutely. “So many choices revolve around his eczema, from vacation destinations, a ban on sleepovers to checking for swimming pool cleanliness. But we have all progressively accepted the lifestyle changes required”, adds Priya.
“The doctor has assured us that the low dose causes no side-effects.” Still, Rhea worries that the epilepsy medications could affect personality or behaviour. “We use gentler disciplining, because we don’t know how the medications alter his moods or functioning.”
Sibling interactions also come under more scrutiny than normal. Rhea’s elder son Michael*, aged 12, has been told to never hit his brother. “Michael senses that Matthew gets more leniency. I don’t know whether this parenting difference is normal between elder and younger siblings, or due to their personality types, or our compromise due to Matthew’s condition”, says Rhea. Discussions with Michael have helped him express his feelings. He has understood that his trade-off is a healthier body, not having to take medications and tolerate restrictions like Matthew does.
She ensures that the entire family does not forego foods or experiences that are restricted for Krish.
Priya says, “My elder son Karan* is understanding and protective of Krish.” She ensures that the entire family does not forego foods or experiences that are restricted for Krish. “Krish used to find it unfair earlier, but with increasing maturity, he understands that it just doesn’t make sense to aggravate the eczema.” She also stresses positively on what he can do and eat, instead of focusing on limitations. “If he wants to try something that’s not going to affect his health, I ensure he gets it.”
It helps to find alternatives to counter the restrictions. Being allergic to all nuts except almonds, Krish eats sweets such as jalebis, which are nut-free. Priya adds, “We make homemade pizza with less cheese and get white chocolate. His friends’ moms send eggless – snacks for their kids, and order extra eggless and nut-free goodies for their kids’ birthday parties.”
Some things are non-negotiable, but Rhea and her husband make more allowances for Matthew than for Michael. “We don’t want to stress him out, so we don’t push him, whether about discipline, or his studies.” Their easy-going discipline has not had negative effects – Matthew is doing fairly well in all spheres.
Since Matthew’s seizures are sleep-related, bedtime and sleeping arrangements present a challenge. “We make sure he is never upset at bedtime, and had him sleep in our room to watch him at night.” Matthew has recently moved to his own room, but moves back to his parents’ room whenever he is unwell or stressed.
Rhea’s and her husband’s bio-medical backgrounds have affected how they deal with the issue. While it has helped them manage Matthew’s condition well, Rhea says, “My husband has had a hard time accepting it, whereas I blamed myself at first. After I understood the facts, I realized it can’t be blamed on anyone or anything.”
She is open about Matthew’s epilepsy, especially informing teachers, friends’ parents and close family, without alarming them. Her easy-going attitude enables others to also treat Matthew normally.
She feels that being straightforward and openly discussing need-to-know information helps positively address kids’ difficult feelings. “Other people take their cues from you”, believes Rhea. She is open about Matthew’s epilepsy, especially informing teachers, friends’ parents and close family, without alarming them. Her easy-going attitude enables others to also treat Matthew normally.
Priya reports that people readily accept her instructions about diet, medication and environmental factors such as sand pits that trigger Krish’s eczema. She says, “Other adults have never dismissed or disbelieved me, but a few have been surprised that a child could have such allergies.”
As yet, these Indian moms have not encountered peer issues around their children’s chronic conditions. Creating a balance, and staying supportive and in tune with all family members’ needs does build up additional stress, but this can be resolved in healthy, effective ways.
*Names changed on request
I'm currently a communications specialist in the corporate world, and mom to a teen
Those were good tips. Ought to be read not only by affected parents but others with children who are not affected. They may gain useful insight into the problem and train their own children to understand that some of their friends are different and need special care. This in turn would sensitize them.
@Hip Grandma, thanks. I agree about the need for sensitisation and awareness.
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