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.

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

Home Visiting Special Children…Part 1

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Home visits are important to understand children’s behavior at school and it becomes easier to interact with the parents if they are able to communicate with the staff of the school on daily basis.  Home visitations by teachers gets parents involved in their child’s education and they let parents and children know how much the teachers care.

On 18th July 2019 a home visit was made to three students’ homes at Uran (in Raighad district) by Madhuri, Charu and Pushpa. The students whose homes were visited were Arafat (12yrs) Shravani (14yrs) and Rishikesh (17yrs. ). They are the students of our Uran Centre called Seabird Special School. About twenty minutes were spent in each home.

Two of the students, Arafat and Shravani, had not come to school for few days because they were not well but the children were very happy to see their teachers visit them at their home.

All three live in very tiny sparsely furnished house. The children live under constant supervision of their parents.

Arafat lives alone with his mother, His father works as driver in Dubai (presently, he has not been keeping well, hence has taken temporary job in the city).  His two sisters live at Madrasa at Ratnagiri and are doing Islamic studies. During their holidays, mother makes a trip to visits them.  Arafat is encouraged to do his own work like washing his own plate, keeping the house tidy and other such small odd jobs at home. He spends most of his time at home. He does not have many friends in the community because of his limited speech and his quiet nature. However mother plays indoor games like dominos and lego with him, whenever she gets time. He goes for prayers regularly, three times a day, in the community meeting where he is taught to read and pray. He even kept fast during Ramzam for 16 days this year. Mother is quite alert and takes interest in her child’s activities. Arafat is a happy child and is well looked after at home.

Shravani lives with her mother and her younger sister. Father is a labourer and works on contract basis. She had not come to school for few days because she was suffering from psoriasis (she showed us her arm that was darkened and bruised). The road leading to her house is muddy and steep and there is too much filth and garbage everywhere, which is unhealthy for all residents living there. The school bus drops Shravani at quite a distance and she walks alone toward her house through the sleep hill. Shravani lives on second floor. However the interior of the house, although small, it was quite tidy. Mother was busy cleaning the floor. There were only two chairs in the room, one TV, one side table and one small shelf of God idols for prayers. Otherwise the room was completely empty. Shravani helps in the house with housework like cleaning; folding clothes, swabbing, etc., but mother is quite protective and does not allow her to do any housework.

Rishikesh lives in row house of one room kitchen. The road leading to his house is very filthy, dirty mud dug up and infested with mosquitos. His house was very suffocating due to poor ventilation and tin roof. Room was bare except for one TV and a bed. Rishikesh”s two medal (that were won during his sporting events) were showcased on the shelf along with other memorable things.  Mother is very gentle and caring. Father has vices and is sometimes irresponsible towards family needs but is now trying to be off liquor. He is State transport driver.

Rishikesh has one sister who is married. He has one elder brother who is studying in another city but comes home during his holidays. The brothers interact well with each other and have a good rapport. Rishikesh does a lots of house work like filling the drinking water, cleaning, sweeping the floor, also makes bed and runs errands for the family like buying small things from the shop...his mother however told us that he needs to be told softly and peacefully otherwise he refuses to do anything. He does not go out or have friends in the vicinity. Post long vacation, it is difficult to get him to go back to school. He loves watching TV and is interested in sports activities conducted in school and also at inter-school competitions. He doesn't want his father to come to school because he is ashamed of him being alcoholic. Otherwise he is happy to be part of school.

All the three families were loving and caring .

Empowering Parents

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Life can be very lonely if you have differently abled child.

Many parents don't have time to seek their own space. The simple pleasures of watching a film in the cinema hall or visiting a salon for a new haircut or simply strolling through the mall for window shopping is the luxury they cannot afford. Differently abled children need lot of attention, some parents are over protective of their children, they will not let them undertake any chores at home for the fear of some accidents.

Such stories and many more were discussed at the workshop on ‘Empowering Parents’ by Gulshan Kavarana on 7th August 2018.

The program started with the brief introduction by one of the parents.

"Gulshan Kavarana is the founding member of SFS (Special Families Support group) a support group for families with children with special needs and the Art Mentor at Mawaheb, an art studio for adults with special needs. It is safe to say that Gulshan’s life changed drastically when her second daughter Zara was born in 1997. Zara has been diagnosed with Dravets Syndrome, a rare form of epilepsy she also in the Autism spectrum   which was triggered by a vaccine. When Gulshan found out about her condition she went desperately seeking help and advise from other parents in similar situations, as she was a new resident of Dubai. She felt as though she was drowning in self pity and felt she was the only one going through the stages of acceptance: guilt, denial, self pity, anger, hopelessness and finally, the best stage of all acceptance… Thus SFS was born.  SFS or Special Families Support Group, started in 1999 with a dozen families in Gulshan’s living room. The motivation behind the group’s initiation was to bring together and uplift children with special needs and most importantly their families."

Gulshan expressed the fact that nobody is prepared for a special child and when she was faced with the problems of dealing with the daughter who had Dravets Syndrome, she was confused and looked desperately for support. Not finding much information on the net, she invited six families with similar problems and formed a support group. it is then she realised that the support group is like a special close knit family who are more helpful than the doctors, teachers or any other professionals. They are the ones who narrow the gap of loneliness and are supportive in giving advice and solutions from their own experiences. In a support group, parents with older children can give better advise.

Gulshan raised the question about how they felt when they took their child for an outing?

The stories that poured out about the challenges that the parents faced were heart breaking. Parents complained that their children did not get respect in the community and they were always cast aside, about how people stood and stared at their differently abled persons, about their trips at restaurants where people complained about the noise that their children made and how they are forced to leave the restaurant, as the result they hardly ever went out.

During the interaction, many parents then came up with solutions on how to deal with such situations.

One parent suggested that there are two choices to every situation, you can either cry or laugh. She said that her happiness comes first and therefore what she will experience will depend on choices that she makes. She had to make decision and do what she feels is right.

Gulshan stressed on the idea that everybody has right to enjoy their life and that one should not feel guilty of leaving their child at home or with a friend to enjoy some moments with their spouse or with friends.  She encouraged parents to meet regularly and socialise freely- organising pot luck lunches, movies or outings.  

She believes that support group is one large family who will understand your problems and will be willingly to help you without judging you.

She advised parents to make their children independent so that it will get easier in their later life.  They must be given time, space and exposure, to let them grow independently on their own strength and capability. There is need to plan for their future and arrange a residential home (If required) so that sibling do not have to take responsibility of taking care of them all life.

By the end of the workshop the parents were in good spirit and promised to keep in touch with each other.

It ended with  game of free expression of introducing each other in Bollywood style and the room was filled with laughter....Parents were  asked to stand in a circle facing each other,  each person introduced themselves in the most  innovative manner…Bollywood style

The workshop by  Gulshan Kavarana was very enlightening and she encouraged parents to form a self support group where they could socialise and help each other. Parents returned home with a beautiful smile  and must have remained cheerful for the rest of the day.

Parents to Parents Interaction

Last week, SBP-Centre for Mentally Challenged had Diwali exhibition where things made by special students were put up for sale in the school premises. There was a good response and the profits were shared with children too. There was a separate section where parents made food stuff at home, things like PaniPuri, Idli Chutney, etc. and put up on sale and there were games corner too. 

This is a parent involvement during such celebrations that make such events so memorable. 

There is a very active parent-teacher association at school which helps keep the student cheerful. It is with cooperation of such parents that staff is able to bring better result with the child’s development in different areas of physical and psychological needs.

You may have hundred of helpers to help you cope with your mentally challenged child but the presence of parents play a very important role in the development of the child.

Four parents of the mentally challenged children of Swami BrahmanandPratishthan were asked to address the parents of students at Ankoor in Pune. They were asked to share their experience and discuss the ways to get the best results from their children with proper training and skills.

Dipti Mehta stressed on three main points.

1.    Acceptance. It is very important to accept the fact that your child is special and will not be able to cope with regular school curriculum. He needs help, a special care and customized training to help him cope with his limited ability.
2.    Search the proper institute that can help your child. It is important to discover what your child’s interest is and more attention should be given to develop that area. For example, Dipti’s son Devansh, loves to play tabla, a music-tutor helps him develop his skill and he get enjoyment and satisfaction in performing well. Academic may be taught, but only on basic level, more important it is to discover, which area is the interest of the child and the emphasis be given to develop those skills. Initially, one-to-one attention is given but as the child begins to have confidence in his skills, he can be involved in group activities.
3.    Make yourself happy first and build your own comfort zone. How can you give happiness to others if you are not happy yourself? Parents tend to forget their own needs and are so busy looking after their mentally challenged child that they have no time for themselves, this results in depression and unhappiness. It is very important for the parents to have some time set aside for their own activities, it could be a social activity like visiting friends and relatives, or leisure activities like drawing and painting.
 

Parents should be in regular touch with school staff to keep abreast with all the school activities and get the regular feedback on child’s performance at school.

DiptiBakshi, parent of our student, Jesal of primary section, spoke about the different activities that parents are involved during the academic year.

Parents are invited for every event at school. School has care-taker’s day, parents day, grand-parents day, sibling days, etc. during which they get to spend time together in the social activities. All festivals are also celebrated at school during which, children learn the importance of each festival and the other details related to each festival. End of every month, group birthdays are celebrated whereby parents and teachers co-ordinate to make their child’s birthday memorable, a different theme is selected each month and all the activities are focused around that theme, for example, Last year the theme was the colors of the rainbow, this year the theme is bouquet of flowers. Every month, there is a focus on the flower of the month. One flower is selected and all the activities like songs, games, handicraft items, surround around one selected flower of the month.

There are regular meeting held at school to co-ordinate the events, the parents get to share their experience, during discussions they realize that they are not the only ones facing difficulties at home. By sharing and caring, they are able to help their child more and have a positive attitude towards all the activities at school.

Another parent, Vijaya Jhewade, mother to Apeksha, spoke about her own personal experience and how there has been a change in her personality since her interaction with other parents of the students.

Vijaya Jhewade was a shy woman, who never interacted with anybody. She was invited by school staff to take part in the parents’ group dance, which they were to perform during the annual school function. Taking part in the group dance forced her to interact with other parents while rehearsing, coordinating and discussing the dance steps, slowly and gradually, she shed off her her cloak of shyness and became friendly. Her dance was appreciated and this gave her a satisfaction of performing well, restoring her confidence and she discovered her new talent. With interaction with other parents, she realized that she needs to make time for herself too, hence went on to pursue her career and is now a qualified nurse.

“One dance performance has changed my life” she said.

Another parent Mr. Dashrath Parag spoke about all the privileges that special child can enjoy legally.

 He spoke about the legal aspect of special child’s rights at the National level, informing the parents about all the facilities available for the special children and how one can go about achieving it.  There is a Parivar Sayadri at all India level that the parents can join. A minimum of 5 parents is required to form a group, become the member of the SayadariParivar to get the regular support at National level.

The meeting was a great success and the parents came back in chirpy mood, happy that they were able to share their knowledge and help other parents in a similar situation.

Disabled persons are not freaks

When a differently-able child comes into this world, parents go through traumatic experience. There are lots of blame games played by close family members and friends, most of the time, mother is blamed for conceiving not-so-normal child. Because of such pressures from society, guilt sets in and mother goes through bouts of depression. She may be forced to give up her social life, personal commitments, her job and other activities to give full time attention to her child.

Lucky are those who get family support and help her pass through the first hurdle of shock and put her on route to acceptance, to help her to accept her child as he is and to think about how best to adjust to such disability, and move on.

Because disabled children are not freaks to be pitied, accommodated or ignored while planning a difficult task, they are also humans who are simply differently able

Some parents are too clingy and protective to their child. They won’t allow their child to grow and be independent. When Harpeet Kaur was admitted to our school SBP-School for Mentally challenged, her mother carried this 11-year-old child to school and we believed that she could not walk. But after month, I was surprised to see her strolling in the school compound. She had overcome her fear of falling and was inspired to follow her class mates.

The differently able person can do wonderful things if given an opportunity. All they need is understanding and compassion, we just need to stand close enough to offer help but far enough to allow the child to spread its wings.

At only five years old, Shayaan Qureshi has come up the perfect response to the many people who stare at him - a big, toothy smile.

"I just look straight at people and smile," said the little Bahraini resident, who was born without arms. "I tell them I don't have hands but I can do everything."

Shayaan has dysmelia, a rare,congenital upper-limb disorder. His family was recently in Dubai to meet a support group for people with special needs and their relatives.

 I had met Malini at Oxford Book Stall few years ago when I had attended Caferati Read-meet. She communicated with me through typing in her machine and I was amused by her sense of humor. I admired the way she has conquered Cerebral Palsy and is the crusader for rights of disabled persons.  She has been awarded the national Award as a role model by the Ministry of Social Justice.

Did I have my own personality? Was I just another disabled girl who needed things done for her? I knew that I was different and trapped in a dysfunctional body, but did others realize I had a spirit and a mind separate from this body? My body did not work like others, but did they realize that my mind was normal? Did they consider thinking that my desires were just the same as theirs? Writes Mailni in her book titled ‘One Little finger’

Live life to the fullest” says Malini Chib, author of “One little Finger’. 

And how can we ignore Stefen Hawkins?

U.S. President Barack Obama talks with Stephen Hawking in the Blue Room of the White House before a ceremony presenting him and fifteen others the Presidential Medal of Freedom on 12 August2009. The Medal of Freedom is the nation's highest civilian honour.

Neither can we ever forget our famous singer Steve Wonders who sang “I just called to say I love you, and I mean it from the bottom of my heart…”

Wonder is presented the Gershwin Award for Lifetime Achievement by United States president Barack Obama

Once the differently abled people who are gifted with special talent are integrated into the mainstream, they are able to compete in the society and show their worth. It’s just the question of acceptance and will power.