A Special Gift With Special Needs

It is 2022. International Women’s Day 2022 theme is to ‘Imagine a gender-equal world. A world free of bias, stereotypes, and discrimination. A world that’s diverse, equitable, and inclusive. A world where difference is valued and celebrated. Together we can forge women’s equality. Collectively we can all #BreakTheBias.’

I strongly encourage you to celebrate women’s achievements, raise awareness against bias and take action for equality.

Some children and youth may need extra support because they have challenges or delays in their physical, intellectual, emotional, social, language or behavioral development. Arun Sawhney shares his journey of raising a special needs daughter.

Arun please tell my global audience a little about you?

I will be completing 25 years of marriage this year to my beautiful wife, Simi. I have three wonderful children, Nonie, Rijuta, and Aditya. I have a passion for real estate and run the most modern gas station in Himachal Pradesh. 

Talk to me about the challenges you have faced in terms of care for Nonie?

Nonie was born in February 1996. She was suspected to be a Down’s Syndrome child which was confirmed later in tests.

Unfortunately, there were/are no special schools or staff to deal with Nonie’s condition at Kandaghat.  Chandigarh’s Post-Graduate Institute of Medical Education & Research (PGI) provided support. There was a dedicated group of doctors with their team of postgraduate medical students conducting a genetic clinic every Monday at the Advanced Pediatrics Centre (APC). We had been referred to have the karyotyping test for which they alone had the facility in the region. Down’s is named after the doctor Dr. John Langdon Down who discovered this condition. In medical terms, it’s called Trisomy 21, an extra gene resulting in the condition.  A lot of measurements were taken every time, we visited the clinic. The senior doctors would guide us on her upbringing. Speech therapy was conducted. I remember Prof. Bhalla, a very soft-spoken person who would ask us to teach her initially 3 words that Nonie had to say when we visited after 3 months. Nonie can read, write and speak pretty well. Her speech is slurry at times. Nonie completed her grade 8 from a normal school with the methodology provided by PGI. Nonie intends on completing her grade 10 from the National Open School. She will be 23 in February. 

How has the culture changed around having a kid with special needs?

Having worked with various organizations on a national level, I can say authoritatively that attitude towards special kids is undergoing a major change.  Government attitude and policy have been highly supportive, especially in the past few years.

I am a big fan of providing pensions to special needs children, with no conditions attached. Special needs children are divided on the basis of physical and mental disabilities. It’s easy to assess and determine the level of disability for physically challenged people who may perform say to 75% or 50% of their capacity but an intellectually challenged person cannot perform any work even if his disability is gauged at 25%. Government policy mandates a 75% disability to be eligible for a pension. This excludes the entire intellectually challenged (ID) population from this crucial benefit. Nonie’s problem is genetic but I’ve observed most ID people come from poor backgrounds and their causative condition is due to malnutrition and improper care during pregnancy. 

What have you learned from your daughter and how has she changed you?

Nonie is the sunshine in our lives, with an extra chromosome, that I call God’s chromosome. You and I don’t have it. The chromosome makes her closer to God. She is the most positive person in the family and a great PR person. She has achieved glory at the Special Olympics She works as the Manager at the convenience store at our Gas Station. She manages the staff. She is very particular about expiry dates and is methodical. While we are traveling, she’s in touch with the staff, observing them on cams and checking on how the sales are progressing. She must have the day-end figures.

Nonie has taught us how to be sensitive to all human beings and how to remain happy despite so many limitations. She encourages, settles arguments, and has a great sense of humor. Nonie has changed us in many ways. We stand up for other special persons whenever we encounter an issue. She bonds the family together.

I am involved more in social work, because of her. We care, but we want society to care for the special persons around them. This is what we have taught to her siblings. They are sensitive to special people. We never hide Nonie. Nonie regularly visits Rijuta’s and Aditya’s schools.  Aditya was initially reluctant when we wanted Nonie to visit his school. But to his surprise, our superstar’s charm raised his esteem. To sum it up she has taught us the value of unconditional love. 

What advice do you have for parents around the world who have kids with special needs?

My advice is never ashamed of having that child. Bring the kid out to social and family gatherings. Shower them with genuine love. When you unconditionally love your child, so will the extended family and then society. If you shun your child then it will have a cascading effect. Be fiercely protective of your child and face off with anyone who makes fun or is abusive. Being in a small town in a bigger family helped us, but never leave your child alone. They could be vulnerable to predators. This feedback I have got from parents living in bigger cities.

Remember you may not always be around. Ensure your child gets some skills to be employed gainfully. Make sure the siblings are sensitive to these issues, so they can take care. The first support system is the family. Parents should never feel burdened by a special child. Make their well-being one of your primary goals. Try to stay cohesive as a family. Broken families are not good for a special kid.

Talk to me about your social cause?

I’ve always involved myself in social work. Now I’m focused on our own venture, The Nonie Sawhney Foundation wherein we plan to fill in the gaps for children in schools in Himachal in terms of educating them on hygiene and providing clean drinking water. The big thing will be a counseling center for special children and their parents.