Down’s Syndrome-Sneha Verma

Sneha Verma is 28years old, Down’s Syndrome adult, placed in the vocational unit of SBP, School for PWID at CBD, Navi Mumbai

Sneha Verma is trained in many skills. Main focus is Home science and housekeeping skills. She is learning Crochet, she is good in Painting she paints Diya, makes greeting cards, envelopes etc. This year onwards candle/ soap making and packaging has been introduced in her training program. She also makes Tea for the school staff at 3:00pm. She is a very good in dancing.

In 2015, she made India proud by winning a Golf medal for Swimming at Special Olympics World Games held at Los Angeles.

Sneha was admitted in SBP in 2005 when she was 11years old. She attended two schools previous to joining SBP. 

“SBP has helped our child to be confident and more outgoing.” Says her mother Madhu Verma. “She has lost fear of the stage. Even in areas of her weakness like speech she is not apprehensive of facing the audience.”

During pandemic, Sneha Verma was kept engaged in different activities through online virtual classes and on her own efforts she kept herself occupied with music and art n craft. She helped with household chores and did a lot of crochet.

As soon as Sneha was born Madhu’s gynecologist informed her husband. She was informed two days later but she refused to believe till her blood test results were done. Being a psychology student herself, Madhu was aware what Down syndrome entailed. 

“Acceptance came immediately to me.” She says.  

She was aware that Downs Syndrome has mongoloid feature, flattened face, small head, slanting eyes, small snub nose. Sneha had all of them. Most Downs children have some heart complication and within a few days of her birth, they were running to various cardiologists. 

“Our child was different, she was special so we needed to take special care of her” says Madhu Verma

Sneha's speech is not clear so at time its difficult to understand what she is saying especially for those with whom she interacts infrequently. Due to swimming she has developed auricular problems so there is no more swimming for her. 

“Her health is a major concern for us. She is a very friendly, cheerful and social person. Helping is her second nature. She is very out going always very disciplined in her day-to-day life. She likes to learn new things.” Informs Madhu 

Basic awareness of Down’s syndrome amongst Parents of such children is high, but for the rest of the population they are one amongst many children with disability. 

Madhu feels that there should be acceptance of these children in society. On observing prominent features of Down syndrome like Mongoloid features, palm lines she advises parents to consult Doctors. They should be vigilant about heart, eye, and speech problems, They even have weight issues.  They should be aware that these children are slow learners. 

Down syndrome children can lead a near normal life if they are engaged in a social or economic enterprise with a strong support system from the society and the government. 

Sharing some of the clippings during her road to fame 

Autistic Child - Khushi Malve

 April 2nd is the day observed all over the world as ‘World Awareness Day’

It is day to make people understand and accept people with autism. It is the day to spread kindness and autism awareness.

Autism is a neurodevelopment disorder characterised by deficits in social and language communication, as well as repetitive behaviours and restricted interests. Children and adults with autism spectrum disorder have a wide range of abilities. Some people cannot speak at all and many have delayed or limited verbal communication. Some are greatly impaired in their cognitive thinking while others are extremely gifted.  Source:

 

Khushi Malve is an autistic student at Swami Brahmanand Pratisthan, Centre for PWID. She has shown marked progress since she joined the school, (eleven years now). Sports teachers at school have enhanced and recognised her skill in swimming and skating. 

“They supported us in every possible way they could. She participated in swimming competition and made the school proud of their efforts.” Says her mother Geeta Malve 

 Khushi has won several medals and certificates for swimming. She won gold in Thane Samaj Kalyan Swimming competition,  won bronze in  National Swimming competition held in Pune.

Geeta Malve is the mother of 17 years old Khushi. 

Khushi was diagnosed with autism and MR at the age of 9months. It was very difficult for her to accept the truth as she was hearing the word ‘autism’ the first time. 

“When doctor explained what symptoms are and how we could cope up with, we said our child can't be autistic”Says Geeta Malve, 

She felt that doctor had not diagnosed it properly. But as an autistic child, she had clear symptoms. It was observed that  Khushi had no eye contact, no reaction to sound, she was totally in isolation,  had no feeling of pain, no toilet control,  a delay in development milestone was observed, there was no motor coordination. For many months, Geeta couldn’t cope with this situation and went into depression.  

Gradually, day by day , year by year, she accepted the truth and heard many stories of success. She realised that the main motto is to make her child independent in daily life skills and understood that many are leading dignified life. She advises other parents to not underestimate the power of their kids  Consistency and encouragement is the key to success.  Patience is very important. She feels. 

“Initially it was very difficult to make the people to understand,” she says, “ Nobody cooperates. Wherever I would take Khushi along with me, some people showed sympathy, others would  take away their kids, I just wanted to tell everybody that these kids also have the right to education,  right to live independently.  You must see their abilities, focus on what they can, not they cannot.  Give them opportunities.”

Geeta is really proud of her daughter's abilities and proudly shares the certificates and medals collected by Khushi.

Khushi has always loved music since childhood. Even though she is sitting socially isolated as soon as she hears some particular music she brightens up  

Pandemic has been very stressful for parents of special children. With no activity to do at home, many children had behavior problems, but online education was started immediately and the good interaction between the staff members and the parents have shown lot of progress in children. 

“Initially, during pandemic Khushi was asking many questions such as why schools are closed, and why must she wear mask. School shutdown affected a lot, she is in meltdown since 6 months. Lots of behaviours changes have been observed.  Hoping for  the best.” Says Geeta.

Geeta advises the parents to attend empowerment program,  

“Give emotional support to the families sailing in same boat, go for early intervention, meet development paediatric for more clarification. Now-a-days lot of awareness  is there in young parents,  you can join support from support group.”

 You can join Forum for Autism. This is is a parent support group which caters to the needs of families touched by Autism Spectrum Disorder. The primary aim of setting up FFA was to create awareness