Guide to Parents: Cerebral Palsy(CP) Concept and Fundamental Principles in positioning and handling
SAMADHAN periodically conducts workshops for parents on topics related to various intellectual and physical disabilities. A workshop was conducted by SAMADHAN on 31st October 2014to create awareness among parents to understand what is meant by Cerebral palsy, its types and which part of brain gets damaged. The workshop was held to provide details on some of the most frequent positioning and handling used as interventions when working with children Cerebral palsy.
The workshop was facilitated by G. Hema Gowri, Special Education Consultant of SAMADHAN and Dr. Anju, Physiotherapist with SAMADHAN. The session was divided into three parts.
a) Defining Cerebral palsy, causes, its types and role of brain
b) Fundamental principles in positioning and handling and its use
c) Use of adaptive aids and the consequences in using wrong positioning and handling
The workshop started with brief explanation of Cerebral palsy definition, causes and its types. More inputs were given on the affected brain parts in different types of CP. How the affected parts of brain affects child’s muscle control, muscle coordination, muscle tone, reflex, posture and balance; it can also impact a child’s fine motor skills, gross motor skills, and oral motor functioning. It was emphasized that the damage to the brain is permanent but it is non progressive in nature.
Dr Anju explained with examples the:
Post evaluation of the workshop shows that the Parents clearly understood that Cerebral Palsy is not contagious. It is neither a sickness nor a disease. The damage to the brain does not get worse, but the effect on the body can result in progressive deformities. Although the damage to the brain cannot be cured, therapy and medical intervention can assist clients to maximise potential and enhance the quality of life.
Link for resources: http://www.cbm.org/article/downloads/54741/Cerebral_Palsy_Toolkit_-_Part_2__Manual__English_.pdf
“Let me talk to Ma’am, please don’t interrupt” is what little Anishka says when we tried to ask the therapist some queries about her development. This report is about a child who had spent 5 years of her life since birth in lying position with absolutely no appropriate therapy services accesible. Anishka, a 5-year-old bubbly child diagnosed to have spastic cerebral palsy came to SAMADHAN in 2013. It was during the survey conducted by Sarojini, a mother of a disabled child from the local community who is trained in identification of intellectual disability and counselling and is with SAMADHAN for the past 25 years, happened to meet Pooja Mishra, mother of Anishka, and explained about early intervention services and its benefits and when the family got convinced, they brought the child to SAMADHAN. She had severe spasticity and had tendo achillies, inflamed band of tissue that connects the calf muscle in the leg to heel bone due to gait abnormalities. The child was in pain and used to cry a lot and was unable to sit on her own or even propped. Major challenge was her obesity caused by long period of inactivity since birth.
To address this issue, the child was prescribed, KAFO, a long-leg device that spans the knee, the ankle, and the foot in an effort to stabilize the joints and assist the muscles of the leg. This was done free of cost and it reduced the pain considerably. Though because of severe spasticity, the improvement is slow in all extremities, the child has started bridging by herself.
Now with regular interventions, Anishka is able to come upto quadruped position that is crawling position and can maintain it as well.
The mother sits through the therapy sessions and the child is now given special education as well to improve her cognition and fine motor abilities. “I have now a lot of hope and I am sure Anishka will be attending nursery class like other children from next year”, says a confident Pooja and we hope she will.
Two-year old Yash alias Chikku was admitted in early intervention unit of SAMADHAN last year was diagnosed by a premier institute in Delhi as having musclular dystrophy, a condition which leads to Muscular dystrophy (MD) is a group of muscle diseases that weaken the musculoskeletal system and hamper locomotion.
ash’ parents, Mamta and Rajesh were from Rajasthan came to Delhi and started a small daily needs store. Theirs is a joint family and in 2011, the whole household was rejoicing the birth of the first child, cute little Yash. As days passed by, family members were bit concerned about the milestones getting delayed and sought the medical advice from Paediatric unit of the popular government hospital in Delhi. Much to their shock, they were told by the doctors that the child has muscular dystrophy and will not survive beyond six months. The devastated family members were then approached by the case worker at SAMADHAN and that became the turning point for the little Yash and his family.
When Yash came to SAMADHAN, he was unable to get up on his own, could not stand without support. The child was started on occupational therapy programme with interventions like balance board activities, bouncing the ball in sitting position, slow vibration given for full body, exercises focussing W sitting to kneeling, weight bearing, rollator walking.
Now the child is 3 years old and started walking without support, at least three rounds within the early intervention unit at SAMADHAN. The child still needs verbal prompting to do the activities and hence given psychological support to improve his response to stimuli.Yash’s aunt dedicatedly brings him to SAMADHAN and diligently follows the instructions of the occupational therapist at home as well. The progress in Yash is very encouraging. “ I do not have words to thank the staff and professionals of SAMADHAN for making my son walk and bringing cheer back to our family” says Mamta, mother of Yash. Yes this will not be possible without those who believe in early intervention and support this project.
A big "Thank You" to all of you for contributing towards the new lease of life to these children. We would love to know about your thoughts on our early intervention programme.
Two-year old Meethi was admitted to SAMADHAN’s early intervention unit in 2013. Her father, Pankaj is a shopkeeper and mother Rimpy is takes care of household chores. Being uneducated she finds it difficult to get a job while Meethi’s delayed development prevents her from taking on even housemaids jobs. The family came from Punjab to Delhi seeking job opportunities as well as to find help for Meethi. But, once in Delhi, they realized that getting a job was not easy and life in big metropolitan cities difficult and competitive. They could not even get any help for their infant daughter until many months later they came to SAMADHAN referred by Mahila Mangal Charitable Trust in Dakshinpuri, which is a low socio economic community and home to a large population of migrant workers like Pankaj and Rimpy.
When Meethi was brought to our center, the Pediatrician diagnosed her as deficient in Vitamin D, resulting in rickets and bow legs. She was therefore unable to sit up and was still flat of her back, needing support to be pulled up to a standing position. This was compounded by a general weakness. Therapy provided covered Neuro developmental technique and a variety of strengthening exercises using specific aids.
Meethi can now stand independently; push herself up to sit, can take weight on her knees and has started crawling. She is an inspiration and the prime motivator for hesitant mothers. With consistent therapy at our early intervention unit, Meethi now started taking tiny steps forward with help much to our delight.
Manju and Kamal Rajoura are residents of Dakashinpuri where our first service centre is located. Unlike many families in this community of largely migrant daily wage workers Kamal has completed std 10 in a local school and his wife has also done her schooling till std 8. They run a small stationary shop and are more informed than most of their neighbours.
Their first son Ishant was born in a local charity hospital and was the cause of much celebration. However when Ishant was two years, he contracted acute jaundice and although he was taken to a local hospital it left him with considerable disability. Doctors seem to have explained that the child could become disabled but no information had been given on how or where to go for the kind of services the child needed. Later, being literate with some education the parents were concerned that the boy did not show signs of normal development. He had deteriorated alarmingly and although earlier he had begun crawling he now began scooting on his buttocks.
In 2011, during the regular surveys carried out by the Samadhan community worker Sarojini, Ishant was identified as disabled and referred him to the Rehabilitation Clinic in our centre. He was provided with all the services available and the paediatrician diagnosed Ishant with Apraxia Cerebral Palsy with generalised hypotonia and delayed milestones. (Apraxia Cerebral Palsy, is a condition caused by brain injury or brain malformation that occurs while the brain is still developing — during the fetal stage, at birth, or after birth — in areas of the brain that affect motor control associated with lack of voluntary coordination of muscle movements. Hypotonia is a state of low muscle tone (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength. )
The team of professionals then completed individual assessments and came up with a plan for rehabilitation. As a first step focus was on the mobility of the child and for this purpose they provided daily physical exercises such as sitting on CP chair, exercises of the extremities, walking with support or with a walker, stair climbing and parallel bars, gait training etc.
Over a period Ishant improved gradually and reached a stage where he started walking and speaking two/three words. At a case conference when the professional team met, it was decided to admit Ishant into the education unit in the centre itself since the children with apraxia needed a more intense speech practice opportunities and this would contribute to an improved speech pattern. Subsequent to his admission in Samadhan’s preschool unit, Ishant’s speech improved dramatically and he was able to now participate with the other children in drama and singing; his cognitive skills also improved. He can now count, identify objects, animals, fruits etc., and imitate sounds of animals and birds, knows Hindi and English alphabet, can tell the names of family members, can fill colours within shapes, can count up to 20.
Three years of regular intervention at SAMADHAN, has changed the life of Ishant and that of his parents. He is turning 7 this year and his parents look forward to a time of celebration and are acutely aware of how timely intervention had changed Ishant’s future into one filled with hope. There is every reason to hope that he will develop further and improve his skills.
The most supportive factor in Ishant’s improvement has been the consistent and dedicated input of his mother and father. The Psychological professional provides counselling as needed and in Manju’s case she needed consistent and friendly support to continue with the exercises that Ishant was to carry out at home and focus on his improvement. It has impacted on the family as well as neighbours and the community. Seeing the marked improvement in the child that they had all given up as hopeless, has even changed the negative perceptions the community had about disability in general. Ishant, and his family, all unknowingly have been a major agent of change from seeing disability as totally irrevocable situation to a more positive and hope filled perspective.
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