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 

Down's Syndrome - Nevan

Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features. The average IQ of a young adult with Down syndrome is 50, equivalent to the mental ability of an eight- or nine-year-old child, but this can vary widely.

 Source:

Nevan is 8years child with down’s syndrome, student at Swami Brahmanand Pratisthan, centre for PWID at CBD, Belapur, Navi Mumbai. He was admitted in Special school when he was seven years old before that he attended normal play school for two years.  Physically he is weaker compared to an 8-yr old child, mentally his growth stands at 55% in comparison to his age. He is extremely alert and has a very good memory and imitation skills. He learns very fast from seeing and observing and will always want to try new activities. Memory and imitation with understanding are his strongest skills

His parents had read about Down’s Syndrome before Nevan was born, so they were aware of hyptonia, weak heart and vision, slow digestion system and slower growth. From their studies, they knew about the external points like facial features, eyes, softer muscles, etc. As for the health situations, they are also aware about points like weak heart, hypotonia, defective vision, slower mental ability, slight impairment in hearing, etc.

“The test was conducted as soon as he was born and we knew about it.” says his mom, Patricia. “We celebrated his birth with as much joy as we did for my first-born son. He showed signs of alertness and emotions. Our reaction was joyful to have him born to us and we would do anything to keep him healthy.”

 Nevan’s mom Patricia is confident that children with Down’s syndrome can lead a near-to-normal life with positive social assistance and understanding from family and society. As a parent, she advises that parents must be vigilant about proper food and nutrition as that combats the weak digestion and improves muscles. She recommends that the child gets eyes, ears and speech checked regularly, to use proper equipment for the child right from when they are one year old and has continuous physiotherapy and occupational therapy.

Patricia is very happy with the improvement that Nevan has shown after being admitted at Swami Brahmanand Prathisthan. “He learnt to use the wash-room when in need, learnt playing physical games and also has a liking for swimming, his eating habits have improved, he has started saying a few words, maintains erect posture, running, walking and definitely dancing are his strong improvement points” 

She feels the school’s complete holistic learning has put Nevan in a progressive mode. “The activities like sports activities have helped him to now love football and the occupational and physio therapies have helped him to be more in control of his body and his daily routine. The teachers attention and care and constant motivation for all students including Nevan has been a very big step for his progress.” Says proud mom.

During Pandemic, there has been regular virtual classroom throughout the year, thanks to good interaction between parents and class teachers that include professionals like physiotherapists, art, craft, music, sports teachers, children have shown great improvements.. Nevan is too young to understand much about pandemic but he definitely has learnt to wash hands and legs as soon as he comes home. He has understood that there is a need for washing hands, taking a bath, wiping a plate before eating, etc. he spends his time observing and imitating his older brother and thereby learning it thus.

Patricia feels that there is not much awareness about Down’s syndrome. “I think the general public is more aware of a physical disability than mental / emotional situations. In this case this is a genetic disorder and to understand and accept DS will require more awareness among public.” 

She expects society to be more inclusive and not being exclusive when noticing a differently abled persons. “The people or children who are specially-abled are able to do the routine activities but they may be slower or may do it differently. The society needs to assist and not over-help. People must be aware of the good side of the differently abled and not think of it as a burden or “some ‘thing’ from the previous life” mythology.”

We have many students who are in the area of studies through which they are learning psychology, therapeutic studies, medicine, etc. “The institutes of the type could set up co-learning and teaching for DS students to learn to live and/or learn techniques through which they can also be of assistance to therapeutic practices.”  she adds

Now, to spread the Down’s syndrome awareness, ‘The Lucky Few’ movement has spread; anyone who feels lucky to know someone with Down syndrome is getting the tattoo of 3 arrow. The tattoo is meant to be placed in an obvious spot to start a conversation about Down syndrome. This allows The Lucky Few to spread awareness, promote inclusion and educate others about Down syndrome. 21st March is recognised as Down'e syndrome awareness day.

Watch your Etiquettes

It is difficult for parents of mentally challenged child to lead a normal life. Most of their life revolves around the activities of their child and it is a blessing if somebody offers help to baby-sit their child so that they can do some socializing.

But often it is seen that most of the people offer help out of sympathy. Many do not have proper etiquette when they are visiting a family of a mentally challenged child.

Some of them ignore the presence of such child. This makes the family very uncomfortable. The right approach would be to talk to the child, say hello or a smile to acknowledge his/her presence. The eye contact is very important which is the bridge to reach out to the child. But please don’t overdo it. The communication is just to convey that you accept his/her handicap and can understand his limitations.

Special children have no patience to wait for long at Doctor’s clinic. If you see the child having difficult time, don’t judge the parents. It is not their fault. Ask if you can help, but if you are asked to stay away, just smile encouragingly and leave.

Inappropriate behavior can manifest itself in different ways but don’t be surprised. A mentally challenged child has lower IQ and an autistic child may be playing oddly. He may grab food you are eating; he may be repeating meaningless phrases over and over again. You have to use your common sense, accept, smile and don’t be judgmental. The less self-conscious the child feels, the more likely the situation is to resolve itself. Parents know their child and they know how to react but if you interfere, you are likely to spoil the situation.

Autistic children and those with Down’s syndrome are bright, creative and thoughtful. Just accept them for who they are and love them no matter how they behave. Those who are non verbal and non-responsive also understand your moods and they will relax if they are comfortable.

If you really wish to understand these children, visit a special school in your area and spend an hour or two observing their behavior and you attitude is likely to change.

Special children are loving people and you will be surprised of the amount of happiness you are likely to bring back home with you after spending a wonderful day with them.

A reliable 'Downs Syndrome' worker

This is the true story of a mongol sent to me and it touched my heart: .....

I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy.

But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie.

He was short, a little dumpy with the smooth facial features and thick-tongued speech of Downs Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade.

The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded 'truck stop germ' the pairs of white-shirted business men on expense accounts who think
every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.

I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot.

After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old kid in blue jeans and Nikes, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table. Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty. Then he would scurry to the empty table and carefully bus dishes and glasses onto his cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.

Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed
work.

He was at the Mayo Clinic in Rochester getting a new valve or something put in his heart. His social worker said that people with Downs Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine.

Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news.

Marvin Ringers, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table

Frannie blushed, smoothed her apron and shot Marvin a withering look.

He grinned. 'OK, Frannie, what was that all about?' he asked.

'We just got word that Stevie is out of surgery and going to be okay.'

'I was wondering where he was. I had a new joke to tell him. What was the surgery about?'

Frannie quickly told Marvin and the other two drivers sitting at his booth about Stevie's surgery, then sighed: ' Yeah, I'm glad he is going to be OK,'she said. 'But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is.'Marvin nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables. Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.

'What's up?' I asked.

'I didn't get that table where Marvin and his friends were sitting cleared off after they left, and Pete and Tony were sitting there when I got back to clean it off,' she said. 'This was folded and tucked under a coffee cup'

She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed 'Something For Stevie.'

'Pete asked me what that was all about,' she said, 'so I told him about Stevie and his Mom and everything , and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this.' She handed me another paper napkin that had 'Something For Stevie' scrawled on its outside. Two $50
bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply: 'truckers.'

That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work.

His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back.

Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.

'Hold up there, Stevie, not so fast,' I said. I took him and his mother by their arms. 'Work can wait for a minute. To celebrate your coming back, breakfast for you and your mother is on me!' I led them toward a large corner booth at the rear of the room.

I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper n napkins. 'First thing you have to do, Stevie, is clean up this mess,' I said. I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had 'Something for Stevie' printed on the outside. As he picked it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. 'There's more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems. 'Happy
Thanksgiving. '

Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well.

But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big smile on his face, was busy clearing all the cups and dishes from the table.

Best worker I ever hired.

Down Syndrome Child

She is stubborn but she is smart, she knows how to get her things done, even if she has to boss over her friends (specially when her teacher is not looking.) She likes to be the centre of attraction and is a quick learner. On festive days, she will wear her frilly dress, fancy clips in her hair and even carry a matching purse. When she is in mood, she will help with cleaning the class, and tiding up the room and then give her sweetest smile. Kareena Rajput is 10 year old Down syndrome child, so very cute that you just cannot resist hugging her.

Kids with Down syndrome tend to share certain physical features such as a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue.

Other characteristics of people who have Down syndrome are that the sinuses are not developed properly and this can cause the tear ducts to block and make them look like they are crying all the time.

Kids with Down syndrome have a wide range of abilities, and there's no way to tell at birth what they will be capable of as they grow up

Approximately half of all kids with Down syndrome also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself.

Vision problems commonly include amblyopia (lazy eye), near- or farsightedness, and an increased risk of cataracts.Regular evaluations by an audiologist and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills

Low muscle tone (called hypotonia) is also characteristic of children with Down syndrome, and babies in particular may seem especially "floppy." Though this can and often does improve over time, most children with Down syndrome typically reach developmental milestones — like sitting up, crawling, and walking — later than other kids.

At birth, kids with Down syndrome are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers.

For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.

Other medical conditions that may occur more frequently in kids with Down syndrome include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia.

Upper neck abnormalities are sometimes found and should be evaluated by a physician (these can be detected by cervical spine X-rays). Fortunately, many of these conditions are treatable.



(Kareena with her class mates, she loves painting)

Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically.

Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with Down syndrome

Although no one knows for sure why Down syndrome occurs and there's no way to prevent the chromosomal error that causes it, scientists do know that women age 35 and older have a significantly higher risk of having a child with the condition.

Down syndrome affects kids' ability to learn in different ways, but most have mild to moderate intellectual impairment.



Kids with Down syndrome can and do learn, and are capable of developing skills throughout their lives. They simply reach goals at a different pace — which is why it's important not to compare a child with Down syndrome against typically developing siblings or even other children with the condition.

While some kids with Down syndrome have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with Down syndrome will have a congenital heart defect.

Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist.

Breast feeding is very important for all babies especially for children with Down's syndrome because Mother's milk offers better protection for the immune system than formula milk. and the immune system of children who has Downs syndrome is almost always suppressed.

A simple, risk-free blood test can detect Down syndrome from the blood of pregnant women

Researchers in Hong Kong have developed a way of identifying genetic markers, which show whether an unborn child has the chromosomal disorder, without relying on risky amniocentesis techniques. The most common prenatal test for Down syndrome involves amniocentesis or chorionic villus sampling (CVS) in which a sample of the fluid surrounding the foetus is collected and analyzed.

The procedure might carry one per cent risk of miscarriage. As a result, it is only usually carried out if there is a high enough risk of a disorder - in older mothers, for example.

Source:http://kidshealth.org/