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.

Trapped in a Body that refuses to Obey- Cerebral Palsy

Prachi looked at me from the corner of her eye and smiled as I entered the classroom. All other children were distracted too. One child got up and limped towards me, stretching his trembling hand towards me. I held his hand tight and guided him to his seat.

“Sit and do your work” I said giving him a soft pat on his head and then walked away towards the seat where Prachi was seated.

Prachi moved her stiff muscles, holding the pencil box under one arm while she struggled to extract the pencil with her tightly stretched fingers. Repeatedly she tried grasping the pencil to slide it out from plastic clasp of the box. Her movements were jerky and abrupt, it appeared to be uncontrolled and without purpose. Her body moved and suddenly she fell off the seat, with her legs in scissor-like position and her hands stiff, up in the air. Her classmates startled, all rushed and stood around her as she lay stiff on the floor, staring at children around her.
“Move back, go back to your seats” I said while I held her under her arms, lifted her heavy body and helped her sit on her seat again.

“You okay? Be careful” I said as I removed the pencil from her box and placed it between her fingers.

Being careful is not easy for Prachi, especially if she lives in a body that refuses to obey her.

Ten-year old Prachi suffers from Cerebral palsy, a condition caused by abnormal development of brain and nervous system due to which there is stiffness in the muscles and constriction of motor activity. She has problems with posture, balance, walking, speech, swallowing and other functional coordination.

“When Prachi was born, she did not cry” says her mother, Anita Chavan, “there was not enough oxygen to reach her brain as the result her brain was damaged.”

All her milestones were delayed; she could not control her head, roll over or sit without support. Over the years, she has shown little progress but she needs help in most of her activities.

Cerebral palsy can result from the damage to certain part of the brain which can be due to prenatal, natal or postnatal factors.

Risk factors linked with cerebral palsy can include Rh factor incompatibility where there is difference in blood between mother and fetus; however this is almost detected and treated in women who receive proper prenatal medical care, sometimes it can be genetic or hereditary condition, There is a bigger risk if there is complication during labor and delivery due to which the brain does not receive enough oxygen.

“She is quite normal in other ways,” says her mother, “She understands everything and is intelligent too. She is quite independent and does most of her thing on her own; I help her only with brushing her teeth and combing her hand.”

During the lunch time at school, her classmate brought for her a bowl of water and helped her wash her hands. She unlocked her lunch box independently and clapped her hands when she saw the Aloo Paratha in her lunch-box. Her classmate rolled out the Paratha into a small cone and placed it in her hands. She started to chew, masticating each bite slowly, with her saliva dripping from the side of her mouth.

The problems and disabilities related to Cerebral Palsy range from very mild to very severe. Their severity is related to the severity of the brain damage.

At the age of 7 months, Prachi suffered from minor fits. Her mom took her for many tests, visiting various doctors and hospitals. At Nanavati, Mumbai, she underwent EEG (Electroencephalography) for the diagnosis of seizure disorder. Physiotherapy was then suggested for relief. Once a year, her mom, Anita Chavan, regularly visits a hospital in Nagpur where parents of CP are given training in physiotherapy to help their child. To help her child further, Anita Chavan has even completed the special education Teacher’s course from NIMH at Navi Mumbai.

While special treatments are given to the child to develop specific skills, the overall goal of treatment is to help the individual to live the life as normal as possible. This can be accomplished by variety of different approaches managed by team of professionals like physical, occupational, psychological, medical, speech therapies, etc.

Physical therapy involves stretching, bending, yoga, and other physical exercises to strengthen the muscular reflexes. The focus is on developing specific skills such as holding the head straight, sitting without support and walking independently. Occupational therapy involves development of fine motor movements like feeding, grooming and personal care. Speech therapy is used to overcome communication problems. Many children with Cerebral Palsy have limited and slurred speech because of the poor muscle coordination of tongue and lips. Medical therapy comprises of all the medical problems like seizures, breathing, feeding and digestive problems and their treatment.

Prachi is mentally alert child and was admitted in a normal playschool in Bangalore at the age of 3 years. When her family shifted to Kharghar, Navi Mumbai, she could not locate any special schools for spastic in her area. “I want to integrate her into a normal school” says her mom, “the only special school for Spastic is in Bandra which is very far. I wish there were more school for such children in my area.” She was admitted to Swami Brahmanand Prathisthan, Centre for mentally challenged in 2010 where she is presently attending regularly. She is able to read and write alphabets and numbers, also knows to read and write her name and postal address and is learning many other activities.

Its play time and Prachi walks slowly down the stair, balancing her weight with both her hands on rails. She is social and follows children to the playroom. While other children run and jump, she squats on the floor, looking around for some Montessori equipment to pass her time.

Ps: National Cerebral Palsy Day is celebrated on 3rd October 2011. This is celebrated in memory of Late Dr. Dr.P. K. Mullaferoze

“Cerebral palsy is a multifaceted problem with many systems of the human body which are affected. This requires a team approach and infrastructure in its management. Sadly this is lacking. As a result of lack of awareness, patients present late, much beyond the golden period when a definite impact can be made by treatment. Hence the need to create social awareness and to sensitize our population and government to the problems of cerebral palsy patients is acute.”- Durga Mallikarjuna

Disability awareness posters that were displayed at various nodes by Aarushi

During the world disability week, many posters were displayed at various nodes to spread the awareness of mental retardation



If you have a mentally challenged child you can prevent the mental retardation of your second child by seeking the medical opinion before planning the second child.



The child learns better with his friends, it is important to encourage your special child to play with normal children.



Any one can get a mentally challenged child, it has nothing to do with caste, creed or religion



Getting a mentally challenged man married will not cure his illness



It is important to ensure a proper care of the mother during her pregnancy to prevent the birth of mental chllenged child.



You can contact school and hospitals for guidance and help.



Help them with early intervention by detecting deveopment delays



They can perform better if they are given right training



If there is delay in normal development, suspect mental retardation and get early medical help.



Step by step training the child is the key to the success and improvement.

International day of persons with disability

What is the International Day of Persons with Disabilities about?

“Nothing about Us without Us” is the motto of this year’s International Day of the Disabled People. Proclaimed by the UN General Assembly in October 1992, this day aims to raise awareness on disabled people’s rights at national and international levels.

On the 3rd December 1982, the UN General Assembly decided on the World Programme of Action for Disabled People. The United Nations committed itself and its members to promote the full participation of disabled people in social life and development as well as prevention and rehabilitation measures.

The official title of the Day was changed from International Day of Disabled Persons to International Day of Persons with Disabilities by General Assembly resolution 62/127 on 18 December 2007.

Twenty six years on, many problems are still unresolved. Disabled people are not yet fully considered within international development issues. They are still excluded from society in many countries of the world. Even where effective disability legislation is in place, the implementation lacks ideas and is hindered by negative attitudes towards disabled people. More and more, disability is now seen as a social issue which is not only based on medical reasons.

Facts and figures

The World Health Organization estimates that there are 600 million disabled people worldwide, about 10% of the world population. It is also estimated that about 80% of all disabled people worldwide live in developing countries.

Eighty per cent of persons with disabilities – more than 400 million people – live in poor countries and there is a strong link between disability and poverty. For example, the statistics on employment for persons with disabilities are staggering. In developing countries, 80 per cent to 90 per cent of persons with disabilities of working age unemployed and in industrialized countries it is estimated to be between 50 per cent and 70 per cent. The rights to education and health are also routinely denied. Ninety per cent of children with disabilities in developing countries do not attend school, says UNESCO.

Approximately 20 million women acquire disabilities as a result of complications during pregnancy or childbirth.

Observance of the International Day of Disabled People in Navi Mumbai
Navi Mumbai and Raigad District have less than 20 Organizations working in the field of disabilities. With tribal and rural areas to be covered and scarce resources, this year, all Organizations working for persons with disabilities in Navi Mumbai and Raigad district have joined hands to celebrate the Disability week under the banner “AARUSHI”.

“AARUSHI” through various activities from 2nd to 7th December, 2008, plans to bring about AWARENESS about various disabilities in the minds of the lay public and EMPOWER persons with disabilities and their families to live in mainstream society.

Children's Rights

Before understanding the rights of a special child it is important to understand the rights of every child.

“The child, for the full and harmonious development of his or her personality, should grow up in a family environment, in an atmosphere of happiness, love and understanding. The child should be fully prepared to live an individual life in society…in the spirit of peace, dignity, tolerance, freedom, equality and solidarity.”
-from the UN Convention on the Rights of the Child

Every child has a right to their childhood – a hopeful existence free of exploitation, violence, neglect, and extreme poverty. Children need education, health services, consistent support systems as well as love, hope and encouragement; all these things and more are required in order to experience childhood to the fullest, and to eventually develop into healthy, capable adults.

Children cannot always be told what to do and what to think; they should be able to affect decisions that concern them.

However, millions of young people around the world are exploited in different ways. Children are forced to work in factories, in backrooms, on the street, and in the sex trade. They can be sold as slaves or even drafted to fight in wars. The violation of children’s rights is pervasive throughout many countries and fuels struggling economies, but exploitation of children is not restricted to the public sphere. Alarmingly, children are too often the recipients of violence in their own home, where a high percentage of abuse- sexual, physical, emotional, and psychological- takes place.

Why does this occur? Conditions of constant conflict or poverty inevitably propagate societal ills. Furthermore, children are easy targets for exploitation because they are dependent on adults and social institutions for their development, usually unaware of their rights, and unable to vote or voice their concerns formally.

There are people doing meaningful work to promote children’s rights. Human rights agencies and organizations, grassroots groups, media, educators, global leaders, and youth groups. Some of the most influential and effective child advocacy groups are featured in our resources and organizations sections.

But much more needs be done to enforce children’s rights everywhere. The UN must monitor and enforce their conventions with concerted efforts and people everywhere (you included) need to learn and care about these violations

Source: http://issues.takingitglobal.org/children?gclid=CLTTn_OjqpcCFUkupAodwwuPkA