In 2009, a group met every other Sunday, sometimes every Sunday at Jeena. They would take turns working with their kids and with others. They would help the speech therapist set up her props. They would hold up a kid at times, pull down the equipment, set up play-tunnels, silently prod all the kids to respond and react when expected, and cheer when they did. Later, they would catch up on updates, constantly formulating strategies to help their kids make the journey to a less vulnerable part of The Spectrum.
That is how Arush, Saharsh, Anika, Saatvik, and Manu met. Saketh joined when he became a classmate to some of the kids at the special day class. Abhinav and Manav have joined now ostensibly for the latest performance, they’ve had playdates with some kids last year. Jeena provided the foundation, and slowly, for all parties, The Spectrum became the spectrum.
“We were feeling very distraught with the diagnosis and wanted to get in touch with a community,” remembers Sujaya, Anika’s mom. Koyeli, Saharsh’s mom, had a wait and watch approach, “We were not ready to go out and meet anyone initially. When we did visit Jeena, we were surprised to see how parents and kids enjoyed despite their disabilities.” Soumya, Manu’s mom’s experience was- “The first Jeena event we attended was the 2007 Christmas event. Like most parents, this was our introduction to special needs community. It really broke our heart to see so many kids with special needs, and that we were not the only ones. People were very resourceful and accepting.”
Kripa, Saketh’s mom realized too that not all doors close with a diagnosis, “I remember I saw some kids who weren’t verbal but still created wonderful artwork. I was overwhelmed to see this, at the same time it gave me hope – our kids are so special and we need to provide a nurturing environment.”
Meeting at the sessions in Jeena was at first a self-imposed mandatory undertaking- every parent wanted to not lose any opportunity to benefit from any therapy. Then there were playdates at home, and some from the group started attending the social events at Jeena. Some of them attend the information meetings, some the Bollywood dance classes. Rajni urged the moms to consider getting the kids to perform action songs at JeenaYahaan 2010, and the group- BLISS – was formed.
To date, BLISS has performed at JY10, represented Jeena at Genius Kids’ annual show, and Jeena Christmas party. The first two featured action songs were Twinkle Twinkle and Wheels on The Bus. At the end, the kids performed Rudolf the Red-nosed Reindeer. At JY11, they will present a popular Bollywood number.
At the Genius Kids performance, BLISS was part of a show put on by neurotypical children. Priya, Arush’s mom says, “On-stage, there seemed to be no difference between BLISS and the other groups: Some kids performed, others didn’t. Off-stage, every parent was nervous, whether their kid was on the spectrum or not- for that one time, it felt great to be on the same page as everybody, even though we had to work harder to get our kids there.” Sowmya adds, “The performance gave us hope that our kids are capable… every kid has its own potential. ‘Special kids have special talents’.”
The Rainbow Behind The Spectrum
Some from the group even went camping, and on a 3-day trip, to enjoy the snow at Soda Springs, in Tahoe. The group thought they should attempt to have fun for longer hours in the same (rented) house. The kids had their activities, and the adults theirs- guitaring, singing, board games, cards, and cooking.
Sujaya treasures the trip for the memories it created for Anika. “Tahoe is one of Anika’s favorite videos! It is difficult to understand how much Anika is taking in because she does not yet share back. It helped a lot to have her peers who instantiated such activities all the time and this caught my daughter’s interest naturally.”
These friendships, performances, and trips would not be possible without Jeena. The hope and dedication of people in Jeena is just amazing. Every time we’ve met Rajni, she’s egging us on to not just not give up, but to do more. She personifies Jeena’s tagline- If you want the rainbow, you have to put up with the rain. Thank you, Jeena for enabling us to see a rainbow through an essentially dark spectrum!
— Families of Abhinav & Manav, Anika Chatterjee, Arush & Shaona Das, Saatvik Krishnan, Saketh Kishore, Saharsh Nagarur-Reddy, Samanyu Rao