Early intervention key to helping children with disabilities, say Experts

• Bumblebee Society's efforts give hope to parents in Nagaland

Free screening and early intervention camp’ for children with disabilities in Kohima organised by Bumblebee Society.

• KOHIMA — For Lutsushi, the early diagnosis of her son with Autism Spectrum Disorder at just two and a half years old plunged her into a challenging reality. From experiencing non-availability of specialists to seeking help from a psychiatrist for her own well-being was overwhelming.
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• At school, her son was not able to sit still. So, the school suggested her to seek an occupational therapist. But when she looked for one, she couldn't find a single one in Kohima.
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• The mother took her son to a ‘free screening and early intervention camp’ for children with disabilities in Kohima organised by Bumblebee Society, which was held last week. Specialists from Delhi were brought in to screen and assess children with developmental delays and children with disabilities.
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• There, she said, the screening and services provided to her son were “quite satisfactory”, and she was happy with the results. It was the opportunity she had been long waiting for.
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• At the camp, her child was assessed, and a plan was made for him to perform therapy and other activities. Further, detailed steps of what to do and how to help were also given to her.
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• Lutsushi had considered going outside the state for treatment, but it was financially unaffordable. Now, she hopes that more such programmes are made available in Nagaland and the government introduces more district early intervention centres.
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• Having a child with disability at home is hard, but parents should not give up, she said. “We shouldn't give up, and we should not be comparing our children with other children,” the mother shared.
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• While taking care of a child with disability at home, there is a tendency to neglect other children. This happened to her as well. She shared that her other child began to develop behavioural problems.

Also read: Stitching independence: Naga woman challenges disability stereotypes

• “As parents, we should give attention to the child with disability but at the same time, give attention to the other ones too,” she added.
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• “Burnt out” from the personal challenges, she had to go see a psychiatrist. “Look after your child but don't give up on yourself,” she advised.
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• Acceptance and sensitisation
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• Kopele Tepa, headmistress at Bumble Bee Inclusive School and founder of Bumblebee Society, stressed the need to normalise disability in society. “I think community participation is so important because the reason our parents and our community are also not able to come out and readily accept our child (with disability) is because of the lens with which society looks at them—that they are different, they have a disability, and they are inferior,” she said.
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• She observed that a lot of parents and families undergo mental stress and trauma. “And often, if the community is passive, they can really hamper and even delay the acceptance from the parents also,” she pointed out.
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• The community, once they are more open and are willing to understand and learn more about these kinds of challenges, she said, can build a more equitable society.
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• “It takes a village to raise a child. So, similarly, it's important to have the community participate and normalise disability,” she said. As an aunt to a child with autism, she shared that back in the days, a lot of people saw disability as a taboo, but now parents are coming forward.
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• However, pressure from society continues to represent a challenge. According to her, many parents are not willing to admit that their children have a disability due to the fear of not getting enrolled in schools.
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• In this regard, she said a lot of work around sensitising parents and sensitising schools still needs to be done.
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• Early intervention
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• Dr. Madhumathi Bose, an early intervention specialist from Delhi with 30 years’ experience, pointed out the importance of early intervention. One should not hide away from developmental delays but seek professional help early, she stressed.
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• “Because if we just keep them hidden, then we are delaying the whole thing. The earlier we reach out, the better it is,” Bose noted.
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• She asserted that disability is just one aspect; it does not describe a child. “Disability is not the child. The child is separate. He (or she) is an individual,” she said, adding that it is the community that “makes the children disabled.”
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• “The children are born with impairments. But the way we look at them, the way we treat them, and the way we treat the parents is what makes them disabled,” she said.
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• When to seek help
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• Early Intervention Psychologist, Tania, shared that when it comes to identifying children's behavioural developmental delays, one of the key factors is noticing that the kid is not behaving appropriately in public situations, especially when compared with other kids of their age.
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• She added a good marker is always to see how they're behaving when compared to the other kids. Specific markers, she said, include a child usually hitting or crying as a form of communication instead of using language, which also impedes speech in a child.
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• “Even if you are slightly unsure, it is always better to get a professional opinion or just go in and check. Because at this age with children, there is not a lot that is irreversible,” she said.
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• At the free screening camp, around 200 children availed of the various services, including speech and audiology therapy, occupational therapy, and dental and eye check-ups. Besides that, it also provided Aadhaar enrolments for children with disabilities. At the camp, ADHD and autism spectrum disorder emerged as the common disabilities among children.