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

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/

Case study of an autistic child

Vinesh lives in his own world, playing with his fingers and shaking involuntarily, sometimes throwing temper tantrums and other times destroying what ever comes in his hand. I see him pull out cane-threads from the mat under him, joining it to make a long string and then stretching and pulling and rolling it over and over. His teacher asks him to stop fidgeting and he folds the string and stuffs it into his pocket, but only momentarily and then, he is again, unrolling the string and playing with it over and over again. He shows no interest in the class activities and will respond only when his instructor gives him a personal attention. His teacher says that he is very cooperative only when given 'one-to-one' attention and he is quite independent in his self care activities. He can paint, draw and perform pre-vocational skills. He is able to follow instructions and is able to ape the actions if given individual help, but for most part of the day, he is hyperactive and lives in a world of his own.

Vinesh is a case of an autistic child.

Autism is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior.

Autism is a complex lifelong developmental disorder, and has no cure, medical or therapeutic. However, through early intervention, many children have been able to lead productive and meaningful lives with support from their family, friends and professionals

Research indicates that giving early intervention in the form of specific and appropriate training methods that are tailored to your child's needs and learning style is the one way to help your child reach his/her maximum potential. Prior to this, it is important that a special educator take a detailed assessment of your child's strengths and difficulties to develop an individual education plan for your child. There are a number of intervention styles/methods, and you would want to choose that would benefit your child most.

Autism primarily affects the areas of communication, social skills, and thought and behaviour.


About a third to a half of individuals with autism do not develop enough natural speech to meet their daily communication needs. Differences in communication may be present from the first year of life, and may include delayed onset of babbling, unusual gestures, diminished responsiveness, and vocal patterns that are not synchronized with the caregiver. for example, they may look at a pointing hand instead of the pointed-at object and they consistently fail to point at objects in order to comment on or share an experience. Autistic children may have difficulty with imaginative play and with developing symbols into language.

Autistic individuals display many forms of repetitive or restricted behavior, such as:

Stereotypy is repetitive movement, such as hand flapping, making sounds, head rolling, or body rocking.

Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way.

Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.

Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.

Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program or toy.

Self-injury includes movements that injure or can injure the person, such as eye poking, skin picking, hand biting, and head banging.

For many children, autism symptoms improve with treatment and with age. Some children with autism grow up to lead normal or near-normal lives. Children, whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity. During adolescence, some children with autism may become depressed or experience behavioral problems. Parents of these children should be ready to adjust treatment for their child as needed.

For further support and help in managing autistic child, read the answer as many questions about autism, dealing with behaviors, and other issues raised by families in India HERE
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Panel Discussion On "Working With Parents"

National Institute for the mentally handicapped (NIMH) RC (Regional Centre), Navi Mumbai is involved in the human resource development. As a part of their activity they conduct CRE- (continuing rehabilitation education) for professionals working in the field of disability.

‘Capacity Building’ in NGO’s was the subject for the CRE that was organized from 2nd Feb to 6th Feb.2009 One of the topics discussed in the CRE was ‘Working with parents’.

A Panel Discussion was held on the 4th Feb at NIMH. Mrs. Dipti Bakshi, Mrs. Nirmala Mohandoss, Mrs. Anika Gurung and Mrs. Laveena Birani and all the parents of special students of Swami Brahmnand Pratishthan were the panel members.

The panel discussion began with a formal round of introduction of the panel members and the participants. The main objective of the discussion was to project parent’s perspectives towards the grievances expressed by the professionals working with the special children.

The participants were asked to write down about the challenges faced by them while working with parents. These queries were then handed over to Mrs. Sukanya Venkataraman who was the moderator at the panel discussion.

The panelists answered all the queries of the participants. Following are the questions asked:

· Why parents don’t send students to School?
· Do parents give more attention to their normal kids? Do they differentiate between their special kids and normal kids?
· Can special children learn?
· Parents do not follow up the program planned by the special educator and give little attention to their home work.
· Parents don’t attend meetings and even if they do attend only mothers attend and Fathers never attend meetings .Why?
· Why do parents lay more stress on Academics and show little interest towards extra curricular activities?
· How do parents handle the behavioral problems of their children?
· Do they expect guidance form professionals with respect to sexual problems of their children?
· What effect does the birth of a special child have on the family members? How does the society, neighbors and relatives interact with the special child?
· How do you involve the siblings in the development of your special child?
· When both parents are working they are not able to carry out certain activities and this hampers the child’s development. Teachers feel that they too have 12 children in their class and hence are not able to attend to the child individually. What is the responsibility of the parents here?
· Do the parent pressurize the teachers because they are worried about their children or is there any other reason?
· Even though the child has reached the age of 18 parents still feel that their child should learn academics. What is their opinion about vocational training? What assistance do they expect from the Institution? How will they contribute towards this?
· What do parents think about the future of their child?
· What do you think of special schools in a rural set up?
· Are parents aware of the Govt. facilities and do they avail of these benefits?
· Sometimes parents use their special child for their own benefit.
· Why do parents give more importance to speech therapy rather than to the special education?
· Is it true that parents do not want to spend more time or money on their special child?
· What do parents think about the money they spend on their ward even when they know that their child will always be dependent on them?
· How should parents ensure the financial security of their child?
· Can parents freely suggest any changes in the program or the activities to the teachers?
· Are the parent’s suggestions accepted by the teachers?
· Are you able to discuss your child’s problems and achievements with the teachers?
· How can parents be motivated to participate in the school activities and functions?
· What are your expectations from the teacher and the Institution?


Parents Feedback received during discussion

Home is the first school and parents become the first teachers. Both home and the school should work together. Parents and teachers can work together as both possess skills and knowledge. Both have certain insights in to the child. Sharing of information about the child could solve many problems. This sends a message to the child that we are all in it together.

Parents being parents are very attached and affectionate towards their child hence they worry about their child.

Both parents and teachers want what is best for the child but somewhere the message gets lost due to lack of time, lack of transparency and due to lack of communication. Once these barriers are broken this gap between the two can bridged.

We need to work as a team. Both parents and teachers should appreciate each other’s efforts.
Many problems arise due various problems like lack of proper guidance from doctors, paucity of knowledge regarding disabilities, poor awareness on the part of parents and many other reasons. If the child’s program and the activities are explained to the parents before starting the program they become the effective partners who work along with the teacher.
Parents need to have more knowledge about their children. Sharing of knowledge through workshops and seminars will help parents gain knowledge and awareness.

Parents involvement is very important – this indirectly helps the child. Their involvement results in improved achievement, improved behavior and improved confidence of the child. The child also will start coming regularly to the school.

Meetings are held by teachers but most often mothers only attend the meetings. Fathers also want to attend meetings . They may not be able to attend for many reasons – their job commitments could be one of the reasons. In the Indian setup it is always the mother who takes care of the children so naturally it is the mother who also does all the interaction with the teacher. But mothers negligence will affect the child’s development.
Fathers can be motivated to participate in the school activities by giving them specific responsibilities.
Parents become good volunteers – the schools can make use of the expertise of parents and get them involved in the school activities. Once they get involved they start enjoying it .
Good parent teacher communication is required for the child’s progress. The relationship between the two is dynamic. What one does affects the other and in between it is the child who gets affected.
The attitude of the teacher is also of utmost importance as sometimes their way of talking may hurt parents. Often we focus on wrong things and so fail to take advantage of the influence they have together.
When parents and teachers make a mutual commitment to the best interest of the child the child feels supported and feels motivated to learn.
We need to form a strong and healthy foundation for the child.
Siblings can be encouraged to participate in the school activities . this helps in helping the sibling to accept the special child and also helps the child to adjust well with the situation.

Teachers need to be understanding towards the emotional state of the parents. Parents should be made comfortable in the initial stage to help them overcome their grievance and accept their child’s condition. Only then a good rapport can be built between the teacher and the parents.
Parents can also support other parents. Teachers should identify parents who have accepted and adjusted well with their child and school activities and take their help in working with other parents.
Parents suggestions should be accepted and respected by teachers and they must not take this as interference by parents.
Parents do need the help of the professionals in handling certain behavior problems, and sexual problems of the children.
Group counseling will also help the parents in overcoming their problems. Parents also need to be trained so training programs for the parents should be arranged by the school.
Many parents are not aware of the Govt. facilities, so awareness programs by professionals will the parents understand the rights of their child.
Teachers should consider parents as partners not as opponents .