When Meena Kalyanasundaram found out that her son had cerebral palsy in 2000, she felt lonely and helpless. “I didn’t have anyone to talk to,” she said to an audience of parents at the Inclusion Utsav conference on March 17. Though Kalyanasundaram went to support groups she did not find any other South Asian parent with a similar cultural understanding of her situation. So she founded Jeena, a pioneering South Asian organization that works to empower neurodivergent children.
Now, after two decades, she continues to nurture the community the best she can, also managing a network of 75 Whatsapp groups. “For the sake of our children, we have no option but to be strong,” she said.
A first-of-its-kind conference
Her audience was the dozens of parents attending the Inclusion Utsav, a free family conference held at the Fremont Downtown Event Center. Bay Area-based non-profit Family Resource Navigators (FRN) organized the event specially for South Asian parents and family members who care for children and youth with special healthcare needs.
Throughout the day, attendees sought advice from mental health professionals, picked up insights about advocating for their child, and built connections with other parents. Other nonprofits and advocacy groups like Vibha, Inclusive World, Community Resources for Independent Living (CRIL), and Community Programs for Exceptional Children (COPEC) supported FRN in this endeavor.
For the FRN Executive Director Eileen Crumm, Assistant Director Kanakavalli Kannan, and Board Chair Sujatha Ranganathan, the Inclusion Utsav is about building a supportive ecosystem for South Asian children and youth with special healthcare needs and their parents.
Ranganathan hoped that the three key words printed on the program flier – “belong, celebrate, advocate” – would be the main takeaway for attendees. “Through these community gatherings, we communicate that we see you, we care about you, and we are your tribe. We are your village,” she said.
Kannan added that another important objective of the conference was to reframe the way we think about children with special healthcare needs. “I’ve always felt that sometimes looking at our children and feeling like they are just the sum of their deficits – or what they cannot do – takes away from them as humans as individuals,” said Kannan, who is a parent herself.
Advocacy 101: The IEP
The fact that parents are the best advocates for their child rang out loud and clear in a session about navigating the state’s network of counselors, speech therapists, healthcare professionals, and insurance options.
Gomathi Ramesh, a parent and yoga instructor, and FRN advocate Sumathi Balaji led the session. Central to being an advocate for your child, they said, is formulating and following an Individualized Education Plan (IEP), a document that outlines the student’s needs, goals and progress. The state of California requires all students who have specialized education needs to have their own IEP and parents usually devise their child’s IEP in coordination with the school staff like teachers and counselors. Then, parents meet with the IEP team periodically to monitor the student’s progress and decide strategies accordingly.
Ramesh and Balaji emphasized that while the IEP meetings can be overwhelming for parents, they are critical to ensure that the child is getting the best possible care. “A plan is only as good as the way it is executed. That means rigorous monitoring and regular follow-ups,” said Ramesh. She also recommended that apart from celebrating the successes and the progress, parents must ask the hard questions like “what isn’t working?”
Attendees also brought up challenges like the lack of transparency in the governmental resources, and differences of opinion with the IEP team. Both Ramesh and Balaji reassured parents that even if they don’t have degrees to validate their expertise, parents are experts of their own child. Thus, they should be confident and outspoken in the IEP meetings and reach out to organizations like FRN if they need additional support. Sharing her experience when the IEP team was deciding on her daughter’s placement, Balaji said, “I will choose the placement of her school, because it is her right to be in the public education system.”
The importance of self-care
An afternoon session led by family medicine specialist Dr. Sumita Kalra, and licensed marriage and family therapist Shalini Dayal tackled the importance of self-care for all members of the family, especially parents. They acknowledged that while all parents can benefit from therapy and self-care, it is critical for parents of children with special healthcare needs. “I think of it like the oxygen mask in an airplane – in case of an emergency, you have got to put on the mask on yourself first, before you help your child,” said Dayal.
She also recounted experiences of hearing her clients talk about the guilt and the shame they feel, which can lead to further mental health issues. “In our South Asian cultures,” said Dayal, “we don’t always talk about self-care.” She added that family therapy can be a helpful intervention to address these negative emotions and come up with strategies to cope.
Apart from therapy, Dr. Kalra spoke about the importance of both parents being on the same page concerning their child’s progress. Since both parents can have different opinions on how to deal with a tricky situation, she suggested that parents recognize their complementary strengths and work as a team to prevent escalation. She also emphasized that clear communication between all family members, and regular affirmation are key to ensuring a harmonious environment at home. “Validation is for everyone – it’s for your child, it’s for your other children, it’s for you and it’s also for your partner.”
Parents show the way
The inclusion Utsav ended with a panel discussion featuring Madhu Krishnan, co-founder of Inclusive World; Meena Kalyanasundaram, founder of WeEmbrace; Rajesh Voddiraju, co-founder of SpeciallyAble Cohousing Community; Sabena D’Souza, co-oridnator at the Union City Library; and Venkat Gandham, founder of Luminous Pathways. They are all parents who spearhead initiatives to foster a more inclusive community for children and youth with special healthcare needs.
They shared their experiences of coming to terms with their child’s diagnosis, overcoming the negative emotions, and founding organizations that are important resources for other parents today. The common theme across all of their stories was resilience and persistence even in the face of professional pressure, logistical obstacles during the pandemic and the demands of their own family life.
Their words especially resonated with the parents of a four-year old boy who was recently diagnosed with autism. Speaking to Kalyanasundaram and other panelists after the panel moved them to tears. The couple wished to remain anonymous to protect their son’s privacy and his right to make his diagnosis public but expressed their feelings about the event. “Every single person validated our feelings, validated what’s going on, acknowledged that it’s okay,” said the mother. “It feels like there’s someone out there for us.”
They appreciated the difficulties associated with raising a child on the autism spectrum especially in the Indian cultural context: “An Indian mindset is completely different, they look at it [his son’s autism] as an inadequacy,” the father said. “My kid has his own world, so it doesn’t mean that he’s inadequate by any means.”
While they had been to other such conferences, they felt a greater sense of belonging at Inclusion Utsav because of the cultural resonance they shared with the other parents. “Being here and actually being able to speak in our language with some of these folks just makes us feel at home,” said the mother.
