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.

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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.

Sukanya Venkatraman – Principal at Special School in Navi Mumbai

Behind every successful person there is hard work involved, there is honesty and commitment. Swami Brahmanand Pratishthan Centre for PWID is an organisation, everybody is proud to be associated with, and why not? Special children of this school show great results, they are always smiling, most of their needs are fulfilled, it is managed by team of dedicated staff and well wishers and is headed by Shirish Poojari and Sukanya Venkatraman.

Sukanya Venkataraman is the Principal of Swami Brahmanand Pratishthan, Centre for PWID at Belapur, CBD, Navi Mumbai.

“I have worked with sincerity and dedication all through out my life at SBP. I have seen the school grow and take a unique place in the community. I have always worked jointly with the management, staff and parents as I know we can never be successful working alone.” Says Sukanya.

Sukanya’s  journey in this Special field began all of a sudden when her father, who was working for Sri. S.K.Birla as his personal secretary, introduced her to a special school supported by them. There was a training going on during that time and since she had just completed her graduation, her dad felt that she could benefit from the training program.  “I was apprehensive,”she says,  “as I had no experience of ever being with people with special needs. But his words still ring in my ears, ‘Sukanya , I think you will do well in this field as  you are very calm and patient’. I have always trusted my father and with no other thoughts on my mind, I enrolled in the training program at Kolkata in the year 1987. Since then till now there has been no looking back as I realised that my father was right.” 

When she joined SBP in the year 1992 the post graduation course that she had done in Kolkata, was enough to handle the class and work as a teacher. In the year 1998 some rules were made mandatory by the Central Govt and all teachers were expected to enrol with the RCI. Her certificate course was not considered valid at that time hence she had to undergo a bridge course to get certified as a professional working in the field of special education. She realised that she had to keep herself updated with the latest techniques and that her certificates were not enough.  

In the year 2007 she enrolled in the BED correspondence course offered by MP Bhoj Open University and NIMH. She completed B Ed. in 2009. Feeling the need to understand and empower herself with organisational skills she joined the PG Diploma course in Education Management and completed  it successfully.  

Her main challenge was her inexperience and lack of confidence but when she began to work as a teacher at SBP, she learnt to take each day at a time and was not shy to ask for help when she did not know something .

“My mentor, Shirish Poojari, was always very patient with me. Her vision and dedication to the field motivated me to take her on as my role model. Best way of learning is by doing what we all did at SBP. We supported each other and gradually I gained confidence.” Says Sukanya. “In order to motivate others I needed to be motivated, it was difficult initially as I moved from the post of a teacher to the post of Principal. My own experience was limited. Thanks to Shirish who guided me in this journey. As I started assessing the work of the staff I noted many loopholes. After discussing with Shirish mam I took steps to fill those gaps. Another mentor Ms. Pranita also greatly helped me during this period. I learnt many things from her. I started implementing whatever I learnt from shirish, Pranita and from my collegues.” 

Sukanya joined SBP in the year 1992 and served till 2006 as a teacher. Since then she has been serving as the Principal of the school. She has completed 28 years of service.  

As a principal her challenges were different. She possessed good skill sets for a class teacher but lacked managerial skills. She was often indecisive. She could not take the right decisions at the right time. Often she depended on the opinions of others. The other main challenge as a Principal were her colleagues. The transition from teacher to principal was tough. Initially her staff did not take her seriously. But as she moved ahead steadfast with the support of all the Trustees, they took her more seriously. They started looking up to her for support.

But she realised that did not help her much. At that time, she got the opportunity to update her knowledge through PGDEM course at Jankidevi Bajaj institute of management studies, SNDT. She did the course with ten experienced people, most of them leaders or heads of organizations. Her time spent was worth while as their experiences and knowledge helped her a lot. 

“There was good sharing of ideas. This helped me a lot to gain confidence and also initiate new working strategies at school.” She says

She organised an annual planning workshop where she took the views of all staff members while planning the years' program. This was taken as a positive step that bridged the gap between her and the staff . “I was a good listener and was keen to listen to the problems of the staff even though I could not solve all their issues...but at least I had taken a step forward. We decided to elevate some senior staff members as coordinators. This helped motivate them to a great extent.”

As a Principal, she has good rapport with the parents of the children because she believes that they are the strong pillars of the school and that they have major role in training their children and also are important resources for the school.  

“Although sometimes they don't realise their worth, the institution can greatly use the knowledge and expertise of  parents instead of hiring people from outside to do a particular task.” She says  “First and foremost is openness, transparency and straightforwardness. The parent-staff rapport is very crucial for the organisation as it will either make or break it. We need to handle parents with delicate care, at the same time we have to be realistic too. We need to have very good understanding of their needs, strengths and weaknesses. All communication channels have to be kept open. We need to be open minded as sometimes parents are better teachers. We can learn from them. The school, teachers and parents have to build a strong foundation for the child to develop in to a productive citizen.”she emphasises

She would like more youngster to follow this teaching profession. “It will be wonderful to have youngsters take up this most challenging profession. They bring in new ideas and innovations and the field of special education will be much benefitted by new technologies and strategies. I would advise them to be bold  and follow their dreams. This field may not be rewarding in terms of money or position but what we get from the children and parents is unconditional. It leaves us with a feeling of satisfaction and self worth.”

Sukanya received the Best Teacher Award in the year 2009 from the District Social Welfare Department, Zilla Parishad Thane, for her dedicated service. For Sukanya,  job satisfaction is not in winning unlimited awards but in seeing the progress in her school“ Job satisfaction for me is when I see my students accomplishing even the most simple tasks. When I see them smile with confidence. When I see the parents empowered and taking a keen role in their child's development. When I see my confident staff take up challenging roles.” She smiles proudly. “As a Principal, pride is to see that my school is high on safety issues for the special children. I have an important job of empowering the staff and parents for sustaining the good work that the school has been putting in all these years.”

With her retirement round the corner, her main focus is to train and empower the senior teachers. She has started Staff Development programs, Parent Development programs and Training of the senior staff to develop organization skills. The most efficient and dedicated teacher will be given the baton to carry on the service and take up the post of Principal after her. She has taken the responsibility of training the teachers for managerial skills and will select only the best.  

“I will be retiring from the post of Principal in the year 2023 but I don't think I will ever retire from my service to Swami Brahmanand Prathisthan. I look forward to being in the  next project of SBP called Brahmagiri” she says

Autistic Child – Aditya Prabhakar

Every year, April is observed as Autism Awareness month. It is during this month that all the important monuments in the city are lighted up as in Blue Campaign. 

But painting the city in blue is not just what is needed, public should be educated on the intense challenges of the diagnosis and the tough aspect of living with disability. It should not be just committed to creating awareness, there should also be critical help given to the autistic persons in the form of social programs, education safety and employment opportunities. 

Many people do not know anything about autism. 

“We discovered it after 3 1/2 years because till then he did not speak.  Then one of our Doctor friend who is a paediatrician guided us to go to UMEED and NIMH for evaluation followed by the therapy and our journey with Autistic child started.” Says Vaishali Prabhakar, mother of 14 years old Aditya Prabhakar. “We were shocked and shattered to know that we have a special child and he has to go to the special school.  Because till then we were not aware about Autism. “

As a child, Aditya Prabhakar did not have eye contact, his speech was limited and he had no social interaction with other children. He was reserved and in his own world. 

Aditya was admitted in Swami Brahmanand School at Navi Mumbai, Belapur, at the age of 6years. Over the nine years in school he has shown marked progress.

His Mom, Vaishali  Prabhakar, is very grateful with the improvement shown by him at school  “We consider ourself lucky to admit our child in SBP.  Thanks to the support of the management, teaching staff and support staff.  They really made him independent, his academic potential was identified and improved upon.  His talent of singing, skating, swimming, table tennis and cricket was motivated encouraged and brought to the competitive level by the entire staff of SBP.  And this is all possible because of the support and guidance of our founder trustee Ms Shirish Poojari ma’am” 

Aditya is very sensitive, understands the pain of others. He is a very good audio leaner, his memory is good, he reads and writes, he is an excellent singer he learns the lyrics through audio, understands the background music and sings perfect karaoke songs without reading the lyrics on the screen.  He is good in numbers.

“Level of awareness of Autism in India is very low that's why society doesn't accept them easily and look at them as an ALIEN.” Says Vaishali, “Society should accept them the way they are and support them and help them to lead a normal life. Wherever we find such children's we tell them our experience and guide them. They should be vigilant about any abnormal changes in the behaviour pattern from day one. “ she continues

Aditya did not go to any other school before joining SBP. He joined school in 2012. He has learnt to perform his day to day activities. He has started talking and mingling with people.  He has won many awards and certificates over the years that include singing, sports, drama, yoga, cooking competition, Aditya had  also participated in a ‘Quizabled Knowledge’ for all in which he won cash prize and a gift

During the pandemic, the online sessions were regular. Due to the perseverance dedication of the management and teacher's he started liking online sessions in academic, sports, art and craft, singing.

“Autistic children's leading a normal life totally depends on the support and acceptance by the society. “ says Vaishali Prabhakar

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