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Parental denial is keeping children with special needs from getting help. For the sake of your child don’t listen to people who tell you ‘he’ll catch up’ or ‘just give it time’.
At what point do you admit that something is seriously amiss. It’s not an easy call to make, but developmental experts are saying that parental denial is hampering diagnosis, and treatment, of children with special needs.
Ninam was diagnosed with autism at 18 months; he is now nearly 3. His mother Sarita Lama is vehement that parents need to open up to the special needs of their child. “Unless you change, society won’t,” she says.
Early signs that a child may need special care include babies not making eye contact, not responding to people by smiling or gesticulating, delayed speech, focusing intently on something to the exclusion of others for long periods, or making repetitive movements, such as rocking and twirling.
“Four As — awareness, acceptance, action and acknowledgement — are the pillars crucial to supporting differently abled kids. It is very important to empower parents, especially mothers, as they are usually the ones taking care of the child all day,” says Dr Deepak Gupta, consultant child and adolescent psychiatrist at Sir Ganga Ram Hospital.
Identifying the right therapy centre takes time as it is, so the quicker one acts the better.
“Getting the right help at an early stage can change the trajectory of the child’s development and future success in learning and socialisation,” says Jackie Harland, clinical director at the London Learning Centre (LLC) in New Delhi. “It is hard to see children whom you know would make significant progress with the right help, not receiving that support. With the right programme, all children can make progress.”
Three young Delhi mothers share their journeys, from symptoms through diagnoses and finding the right therapy for their babies.
‘Sharing the news has helped’
When Ninam was still not responding to his name at 18 months, Sarita consulted a paediatrician, who suspected autism spectrum disorder and referred her son to a psychiatrist.
“I had no clue what autism was, so I went home and Googled to read up,” says mother Sarita Lama. “The next day, we went to a therapy centre to get a psychiatric diagnosis for our son.”
While many prefer to keep such information to themselves, Sarita looped in her friends and family on the day of diagnosis.
“I mailed them reading material so they would be sensitive to Ninam’s needs. Since I was proactive, my friends have also started forwarding interesting information they come across,” says Sarita, who now actively uses Facebook and WhatsApp to spread awareness about autism.
“I also regularly share updates on my son’s progress. I know he will never outgrow it; some issues will always be there. I just want him to be as independent and self-sufficient as possible.”
The biggest parenting challenge for her is that Ninam has trouble sleeping, which also affects her sleep. “I thought it would pass but it’s been two years and eight months since I slept well, which makes me physically and emotionally exhausted. There are days when you feel very down but then you push yourself, especially when you hear about children who’ve overcome challenges,” says Sarita, who gave up her job as a teacher in Delhi’s Nirmal Bharti School to spend time with her son.
With therapy, Ninam can now communicate his basic needs. “He comes to the kitchen and says ‘I want food’, which is a huge achievement,” she says.
‘If you start late, everything will take longer’
Kalpana Jacob discovered that her son Zach was not able to form words when he was 18 months old. “Zach was doing fine till the age of one, and then there was a big lag. He even stopped saying words he had said earlier. He turned hyperactive, running around as an excuse for not talking,” Jacob says.
She adds that it helped that she had friends and family who didn’t sympathise but rather supported. “They are sensitive to his needs but are also firm when required.”
Not being able to talk made him under-confident, which made him socially withdrawn. “But since he is also a sensory seeker with sensory needs, certain things calm him down, like play dough. We let him play in the mud without worrying about his immunity. That helps,” says Kalpana, who runs an organization that offers life skills and leadership training to teenagers though music and storytelling.
Her experience has taught her that early intervention is key to helping children meet their development goals and integrate socially.
“As parents, you must watch for signs, however small, and track milestones,” she says. “You shouldn’t listen when people say your child will catch up. If you start late, everything will take longer — the child will learn to socialise late and may become withdrawn.”
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