NRI Pulse
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Pure Hearts of Georgia: A support group for families with special needs children

BY JYOTHSNA HEGDE

Atlanta, GA, May 24, 2021: Anandhi Jambunathan watched with much joy as her firstborn Krishiv met his first-year milestones such crawling, walking, and smiling at people. But around 17 months, Anandhi noticed that Krishiv maintained minimal eye contact and kept distancing himself from his parents and cried at the sight of friends and neighbors. Based in California at the time, her plans to engage Krishiv at her sister’s engagement in India did not help. When Anandhi noticed that Krishiv got more distant, spinning wheels of a toy car for hours, she began a web search. That was the first time she came across the word “Autism”. Most of the symptoms mentioned in the article matched Krishiv’s behavior.

Autism spectrum disorder (ASD) is a developmental condition that affects a person’s ability to socialize and communicate with others. People with ASD can also present with restricted and/or repetitive patterns of behavior, interests, or activities. The term “spectrum” refers to the degree in which the symptoms, behaviors and severity vary within and between individuals.

Based on CDC surveillance, an average of 1 in every 59 8-year-old children in the U.S. have ASD. Boys are four times more likely than girls to develop symptoms of ASD.

1 in 5 people will experience mental illness over the course of their lifetimes. May, Mental Health Awareness Month is a time to raise awareness of those living with mental or behavioral health issues and to help reduce the stigma, provide support, educate the public and advocate for policies that support people with mental illness and their families.  

Mental Health Month was established in 1949 to increase awareness of the importance of mental health and wellness in Americans’ lives, and to celebrate recovery from mental illness. On April 30, 2021, the Biden administration released “A Proclamation on National Mental Health Awareness Month,” recognizing May as National Mental Health Awareness Month. In addition, 32 states, including Georgia have released similar proclamations, recognizing May as Mental Health Awareness Month statewide.

We, at NRI Pulse join the national movement to raise awareness about mental health with the bittersweet story of Krishiv, his family, and the establishment of Pure Hearts of Georgia.

“He looks normal,” the psychologist in India had told Krishiv’s parents. Anandhi however made an appointment with the pediatrician who referred her to a neurologist and a regional center where Krishiv was diagnosed with severe autism.

Life, as they knew it, had changed for the Jambunathan family. Embarking on the rugged terrain of uncertainties and denial, the family forged ahead with countless therapies and interventions. Therapies such as ABA, speech and OT brought about significant difference in his awareness and understanding.

“The first battle we faced was accepting the situation and getting out of denial,” says Anandhi. Challenges were many and from various avenues. “Helpful” suggestions and curious questions, “Why did you get a diagnosis?” ” he doesn’t need one”, ” he will speak soon, my brother’s child spoke late” “maybe you shouldn’t have eaten bananas during your pregnancy” only alleviated the family’s distress. Some even referred them to priests thinking Krishiv was possessed and needed exorcism! The Jambunathans were left with no choice but to keep away from such insanity. But it also isolated them socially.

As Krishiv turned three, his dad’s job brought them to Georgia. Anandhi joined a Yahoo support group for special needs parents based out of north Fulton and found Indian names and sent them a personal email requesting information.

Having personally met Indian families with special needs kids, Anandhi initiated one of her own, Georgia Indian Special needs Support Group, in which they shared information, references, opinions and held get togethers. With the advent of technology, the group moved over to WhatsApp. A modest beginning of five families has now enrolled over hundred families and counting. Apart from digital interactions, Anandhi and her husband have been hosting regular lunch / dinner gatherings for the past 10 years for parents with a recent diagnosis and have a few of the existing parents, “creating a welcoming network for the new parents”, as Anandhi puts it. They also hold P2P seminars and discussion groups for the parents. Anandhi discovered a private school and more therapies for Krishiv through many sources and kept continuing his interventions.

“Imagine talking about bed wetting issues of an 11-year-old or self-help skills of a 14-year-old or sensory issues of kids with anyone outside the special needs group,” says Anandhi, highlighting the challenges of interacting with parents of neuro-typical children and necessity for parents of special needs kids to mingle with and share their stressful and typical days and sometimes find humor, even. ” Having a group helps to share ideas, suggestions and information about teachers, schools, therapies, approaches etc.,” she adds.

With larger numbers, Anandhi realized a formal organization could be more impactful in helping these kids. Acting upon her instincts, Anandhi, with her best friends Chelvi Sivalingam and Annapoorna Kudikamaldi co-founded Pure Hearts of Georgia.

“Our main goal is to spread awareness and acceptance of such individuals in the community,” says Anandhi, adding they also plan on training them with certain skills and provide a platform to showcase and opportunities to progress.  “We also have been serving as a bridge between typical volunteers who want to help us and our special families.”

Various activities for the kids include yoga during weekends, exercise sessions 3 days a week, music therapy, creative fun, and Bollywood dance, among others. Most activities currently being digital, Anandhi says volunteers make activity folders for the kids as part of their summer or scout projects. For in person activities, they have parents of the kids along with volunteers. They usually explain to the volunteers about ways of working with the kids. While most kids are on the autism spectrum, they do have kids with challenges such as Cerebral Palsy and Downs syndrome in the group.

“We here at Paramount Software strongly support Pure Hearts of Georgia. It is one of its kind organization that not only supports kids who have different needs but also guide, enrich and provide a strong support system to their respective families,” said donor and supporter, Pratima Sajja.

Anandhi’s efforts to showcase the kids’ talents bore fruition with the Dream Show 2019, which featured a total of 54 kids who took to stage to perform dance, music, and fashion shows. “This was the most rewarding moment for us was when all our families and other audiences were in tears to see our kids performing on stage.”

“Acceptance continues to be a major issue – first within the family and then in the community,” ruminates Anandhi, adding that expectation of a successful career poses a huge challenge and even impacts opportunities made available to the child to interact with the community. Having met a lot of families who are willing to help, awareness, she notes is also an issue. Saving significant one for the last, Anandhi observes, “Having an engaging meaningful life, not being isolated – having some friends and getting included in the community. After all, our children look for the same thing all of us look forward to – INCLUSION and LOVE.”

“From being a mother who was looking for support to being a pillar of support to those who need, Anandhi has always remained positive,” compliments friend Sunita Nadella.

Anandhi shares some of her experiences that have helped with Krishiv. Dance, she notes did not come naturally due to motor coordination. Introducing small steps and starting with a 2 minute dance, the tenacious mother had him perform  Karagaatam, a folk dance from Tamil Nadu that requires a vessel with decorations to be balanced on the head while dancing, after yearlong practice. Exercise, Anandhi believes is key regulating mind and body and helps improve focus. Krishiv is now able to workout for close to 2 hours with an instructor, enjoys biking and skateboarding, tennis, table tennis, basketball and baseball. While he may not completely comprehend the rules, Anandhi is happy he knows how to use the bat and the ball. Her weekly zoom exercises are quite popular with the kids, as one parent, Harini Senapathy commented, “Pure Hearts of Georgia has been a true blessing that it has given me lot of friends including Anandhi. Having a group that understands what you are going through without being judgmental is a luxury and I am really lucky to be part of such a group. I have been able to get my son to exercise with me, which is really huge! ”

Anandhi also draws attention to Special needs Will & Trust, which she believes needs 3-4 families or individuals who can take care of the child after you. Underlining on the need to do it earlier than waiting till child turns 16, she stresses the need for the child to be comfortable with them. “Few of us have become tight knit support to a point, where we have written these friends as guardians in our will for Krishiv.”

Cracking a myth around autistic kids that they are extremely talented in one area and parents need to discover it, Anandhi says that is hardly the truth.

Are these kids able to work within public school system? Yes! Plenty of public schools have good programs, with most offering an Individualized Education Plan (IEP), that gives them specific goals that would be worked upon at school. In high school they even have programs to help them with supported employment, but that may not be applicable to all. But, as Anandhi notes, once they are out of high school, there aren’t many options for these kids.

So, what happens when the yellow bus stops coming home? “There are also a lot of employers willing to employ individuals with autism as once trained, these individuals simply go about their work without much of a fuss,” says Anandhi. While that beneficial for some, kids like Krishiv, she notes, will find it very difficult to hold on to a job even for a couple of hours a day without supervision, and some who have no or minimal language.

What lies ahead of public schools? Anandhi says there are very few daycare like options and not enough to cater to this every increasing population. “I would like for my son and children like him to be mentally and physically engaged in a safe place and have some friends around too.” This, Anandhi says keep her awake in the night, “not out of worry but the drive to make it worthy for them.” Quoting Kalam, she adds, “Dream is not that which you see while sleeping, it is something that does not let you sleep. So this is my dream for Krishiv and for children like him.”

Now 16, Krishiv is a student at Johns creek high school special classroom and continues his therapies. But what the family draws strength from the support they found in the community and friends for Krish to play, dance and have sleepovers with.

Recently Krishiv thought he got lost in PETCO, since he couldn’t find the person he came with. He decided to walk to Anandhi’s friend’s home (4 miles away) and was at her doorstep when JC cops found him. That the traffic noises, the heat from sun, and the long walk didn’t faze him, and had managed to use problem solving without panicking bears testament to the unwavering love and support Krishiv receives from family and friends.

“Inspiration, mentoring, enabling and self-sustainable learning for others made a package; you are one of the greatest and best role model for the special need kids and their parents,” says friend Franklin Harris. I agree. Wouldn’t you?

Visit https://www.facebook.com/pureheartsga or https://www.pureheartsga.org for details.

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