- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- “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.
- Acceptance and
sensitisation
- 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.
- 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.
- 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.
- “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.
- 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.
- In this regard, she said a lot of work around sensitising
parents and sensitising schools still needs to be done.
- Early intervention
- 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.
- “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.
- 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.”
- “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.
- When to seek help
- 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.
- 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.
- “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.
- 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.
