Reading has been one of the best things that my mother introduced me to. I remember many birthdays where she would gift me hard-bound storybooks that would transport me to a whole new world. Over the years, this passion for reading has stayed with me and I’m thankful for it. And today, I wish to share with you about a book I read quite recently. An interesting book called ‘21st Chromosome and Other Narratives’, one of a kind, a genre I hadn’t read before- it was all about special children.
The book- written by Champa Jaiprakash struck all the emotional chords in me. Without even realising, I often found myself moved to tears while reading the stories in her book. Stories that she wrote were from her own personal experiences while teaching special children. Stories of the hard struggles these children face, the hardships the parents undergo, and the unity of the entire community to pull these children up and take them with us in our walks of life.
“Let’s hold their hand and walk along with them,” she said when I spoke to her. Champa Jaiprakash has been a crusader for special children for nearly 35 years. She goes back in time and recollects that one moment, that one child who opened doors to her passion and her true calling. It started with a cute little baby diagnosed with spasticity (a condition where certain muscles are continuously contracted causing stiffness or tightness and interfere with normal movement). “She was a really pretty baby- just like a doll,” she recollects. “I remember her parents got her to the school and ‘placed’ her on the chair. Her limbs were stiff and she never moved.”
Champa began therapy sessions and exercises for her. Slowly, tiny movements were seen in the baby and within six months of therapy, she began walking. “It was a very inspiring moment for me. I think that’s where it all started.” And there’s been no turning back. What started then has shaped her life ever since.
“I guess I exploded in another way”
Over the past decades, she’s had the privilege to travel and stay in different states of South India. She credits her husband- K.J. Jaiprakash for this, whose job required him to move from one city to another. Champa gladly transferred from one place to another and wherever she went, she took with her a wave of change to help specially challenged children. But in June 2014, a shocking incident rocked Champa’s life. The demise of her beloved husband blew her off completely. She had lost her anchor.
But she’s not the one to give up on life. While she mourned her husband, she began expressing her grief through writing. “Instead of bringing them out through tears, I guess I exploded in another way,” she says. This is when Champa made a compilation of short heart-touching stories in Kannada which was published as ‘21ne Chromosome Mattu Ethare Kathanagalu’ in 2015 by Chintana Pustaka, Bangalore. Even when it was published, she tells me she was apprehensive about it. “I kept wondering if people would accept it.” I’m astonished by her comment.
“‘Chintana Pustaka’- the publishing house belongs to my relatives and I kept asking myself if they had published it because they had a soft corner for me. But they kept assuring and reassuring me that my writing was real and carried substance.” She got all the assurance she needed for her writing when her book won the ‘Karnataka Sahitya Academy’s Madhurachenna Dattinidhi Award’ in the ‘Author’s First Independent Book’ category. Surprised and thrilled, it was a moment where she realised her true potential. The award was a dynamic change for her. “After the award, people began seeking me for advice and appreciating my work.”
But she never truly thought that she would be an author, let alone receive an award for her writing. “Honestly, I never believed I would become an author. I would always get an urge to write, but I think the death of my husband was the triggering point for me. It was like I had a lot of pent up emotions.” And her pain and grief came out as wonderful stories.
“At this point, I accepted without hesitating”
But Champa wasn’t done. In fact, she was just beginning another landmark journey of her life. In 2016, she channelled all her energy into opening a school for special children. “Starting a school was always at the back of my head, like a vague idea. But I never brought it to action because it was too much responsibility,” she says. “Again, I think it all goes back to my husband’s death. After his demise, my daughter and son-in-law suggested that I start a special school. At this point, I accepted without hesitating.”
Establishing Saadhya School for Special Children marked a turning point in her life. But beginning a new venture isn’t easy. And the hardships that come with establishing a special school are many. “Once I accepted it, I had new complexities to face. I literally had to pull out my roots and move to a new place and start over. But I had accepted to do this and here I am!” she proudly beams. Pulling out your roots isn’t easy. But Champa stands tall, beating all the odds. And just like that, she upholds the symbol of Saadhya- “It’s Possible”.
For Saadhya, she gives all her credits to both her daughters and her sons-in-law. “When it came to all the official work, it was Pankaj- my first son-in-law who did it all for me. It was a new place and a new venture, but they were with me at every step,” she expresses her gratitude.
Her gratitude extends to all her staff, all the parents who have instilled their confidence in her and also to the ‘Ayahs’ in the schools. I noticed how she had highlighted the important role of the Ayahs in her book. “I can’t imagine a special school without them. If they aren’t there, our school would stink,” she tells me when I asked her about it. “When it comes to the Ayahs, I give them all the priority and ensure that they’re equally respected. Believe me, I know their importance.”
I was still hungry to know more about Saadhya and her work there. So she told me about two incidents which were extremely challenging for her. The first was about a boy diagnosed with PDD (Pervasive Development Disorder. The condition refers to a group of disorders characterised by delays in the development of socialization and communication skills). Right from his entry to the school until he left, the boy would continuously cry. “I would think every day of what I could do to help this child. I kept questioning how I could get this child to trust us. I knew that we shouldn’t give up on this child.”
She took suggestions from her staff, something she does for everything concerning Saadhya. Finally, after four months, they began to see changes in the boy. “He would cry the entire day when he joined our school. Four months later, there was a break in that continuity. And once this reduction began, it was a super slide from there.”
There’s another incident that has remained etched forever in her mind. It centres around an elderly child. He was diagnosed with mental retardation and depression and would get aggressive all of a sudden. “Once he hit me with a bucket. It was absolutely unexpected and it was very challenging to console him. He was 29 years old,” she tells me.
One of the toughest challenges she faced here was that she didn’t have any male staff. “In the end, I came to a painful decision. I had a responsibility to protect my female staff. I felt very bad when I asked his parents to take him back. It’s a challenge that’ll always be with me.”
“Everyone wants to help”
I take a moment here to truly understand the real-life challenges she faces. And then I began to wonder the general attitude of people towards special children. People like you and me. “It’s positive,” she assures me with a smile. “Everyone wants to help and is very supportive.”
Immediately, I ask her about the parents. How do they feel when they realize that their child requires special care and attention? She takes a moment and says “it’s a mixed reaction.” Some of the parents are positive. “They believe wholeheartedly that they can bring that change in their child with therapy sessions.” But there are parents who are sad too. “Few others get disappointed when they don’t see the changes quickly. I’ve seen parents who are unable to wait. It’s a wide range and the scale varies a lot,” she says.
I take a moment to understand that. Ultimately, everyone wants their special child to be independent and be a part of society. I began to realise that therapies and schooling is the right way to help these children. Then I ask her about inclusive schooling, where schools embrace all individuals including those with disabilities, giving them a chance to learn alongside their non-disabled peers.
“See, the idea is good, but you need all the proper facilities,” Champa notes. “When you say inclusion schooling, you need to make sure there are special educators and also that the children are exposed to normal schooling.” I again take a moment to comprehend her point of view. “At any inclusion school, the special children shouldn’t simply be ‘dumped’. They should be appreciated by all,” she further explains. “In my career span, I’ve seen both. And the ones that aren’t good don’t handle the children well, especially those with mental retardation.”
“With appropriate therapy, I know a child will improve”
It all comes back to schooling and support for special children. In that sense, what Champa is doing for these children is absolutely remarkable. “My vision is that children with special needs should be integrated into the mainstream; they should be able to get a job, take care of themselves and be independent,” she tells me. “With appropriate therapy, I know a child will improve. And Saadhya is working on all of this.”
Somewhere she instils hope in me; a hope in humanity, a hope of a possibility. Saadhya, I think to myself and smile. She’s the crusader of this possibility and humanity. In return for her crusade, she asks all of us to accept these special children as part of society. “That’s what the child needs,” Champa advises. “Accept the child with all the disability and provide everything they need without any discrimination.” I nod in agreement. In the end, she simply said, “they too are part of society,” pushing all of us to remember them, respect them, and above all- to accept them.