Self Advocates Training Workshop

 When Pranita Madkaikar invited me to experience' the self-advocate training workshop' that she was conducting, I was only too happy to accept. I had heard about this 5 weeks workshop that she and Charu Shah were organizing for special students/ mentors and was curious to know how the children had benefited from this program.

I reached the SBP, Centre for mentally challenged school at CBD and the session was on. The children were introducing themselves and the theme was ‘Voting and Elections’.

A group of about eight children (in the mock elections) sat together facing the audience. Each child was given a chance to make a speech; they tried to make promises like leaders, trying to express their will to bring about change when they were elected.

This exercise might be very easy for a normal child who is creative and spontaneous, but with special child it was an effort, it is tough when the thought process and the speech are not synchronized togather. Each child struggled to get his idea across, for a Cerebral Palsy child, the speech was slow and slurred and it was difficult to understand as she struggled with every word. Some just spoke few sentences and some just made few sounds, then there were some who were able to give a speech in 5-6 sentences but the remarkable point was that all children willingly took the mike to say something. Nobody was conscious about speaking on the mike.

That was followed by all children standing in queue, registering for the election, staining the finger, taking the printed paper with the picture of the contestants, standing behind the booth, stamping on the desired picture and dropping their vote in the ballot box.

The whole process was done so efficiently that one could never guess that how much effort and training was involved for them to be able to perform such an act with so much confidence and discipline.

When the children registered for this training, most of the children had no confidence to speak freely.

Hands-on corporate style training was imparted on important self advocacy skills like

• 1. Developing self esteem
• 2. Identifying ones strengths and limitations.
• 3. Listening
• 4. Getting to know each other
• 5. Making choices
• 6. Working together
• 7. Problem solving
• 8. Leadership
• 9. Public speaking
• 10. Reporting abuse
• 11. Health & Hygiene

Different games were played during the sessions to help children interact with each other. Different teaching aids like colored beads, musical instruments, kitchen utensils, picture postcards, fresh fruits and vegetables, and things used in daily life activities were used during the program.

The trainer would explain the activity, the members would be divided into groups, the trainer would pose a problem, children would be encouraged to find a solution, they would later have discussion and interaction in understanding the problem.

The member were encouraged to recollect activities held during the day and were encouraged to relate the learning from the activities

Remarkable positive changes were observed in the confidence levels and expressive abilities of all the self advocates.

The Navi Mumbai & Raigad Chapter of the SASI was officially launched on 21st October, 2011.

23 Adults with Intellectual disabilities from 7 Organizations from Navi Mumbai and Raigad took part in this program. These self advocates underwent a formal 5 week training for this purpose.

These weekly full day training programs conducted at Swami Brahmanand Pratishthan Special School, Belapur and Skills & Ability Special School, Nerul from 17th September to 15th October, 2011, were planned and conducted by Ms. Charu Shah and Ms. Pranita Madkaikar. 7 mentors (one from each of the participating Organizations) and three Volunteers were also an integral part of this training.

Formal elections were conducted and 6 Office Bearers and 2 members elected by the self advocates from amongst themselves took charge of the Navi Mumbai & Raigad Chapter of SASI from 21st October, 2011. The Mentors will continue to be with the team as facilitators, with the self advocates deciding the roadmap for the future. The volunteers too will help the team by maintaining liaison with external agencies.

Funding for operational expenses of this project is being provided by the Maharashtra Chapter of PARIVAAR (PARIVAAR SAHYADRI) and the Parents association of Swami Brahmanand Pratishthan Special School, Belapur. PARIVAAR is a National level Federation of associations of parents of persons with intellectual and developmental disabilities.

SASI (Self-Advocates Society of India) is an NGO that pledges to open up a world of opportunity for people with developmental disabilities by educating its members, families and supporters, and the general public on the abilities of people with developmental/intellectual disabilities.

• - Communities will profit from the contributions of hard working citizens.
• - Families will benefit from the inclusion of their loved ones into their communities.
• - People with developmental disabilities will grow, building their self-respect and confidence in their ability to succeed.

All the children who took part in this program were given the certificate of participation

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