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News Letter of Mysore Spastic Society |
Archives |
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| 3rd Issue, |
March 2008 |
| Edited by: Sonia Jacob |
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Message by President of Mysore Spastics Society – Mr. A. Raghunath |
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It with much satisfaction and fulfillment, I acknowledge that within a short span of 4 years of its existence, the Society has made great progress, and is galloping forward in its relentless passion for service and excellence in the rehabilitation programmes for the CP children and to their parents in and around Mysore. |
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Beginning with a strength of 6 children, Sneha kiran has grown, extending services to over 105 children enrolled with us. The programme for every individual child encompasses a range of need based specialized training that is provided by a core group of dedicated medical, paramedical and special education professionals. A dedicated group of trained care-takers extend required support to the teachers and the parents in the rehabilitation process. We are also fortunate to have committed volunteers and students from various institutions who work with the team to provide better services in special education, physio- occupational therapy, speech therapy and counselling. |
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While it is indeed a great pleasure to be part of this group by extending support to special children and to their families, it also has become challenging and a Herculean task for us to extend our services to many more who await our support. Due to the limited resources, space constraints and difficulties in providing required transport, only 45 children have been able to attend the centre on a regular basis. I am sure these hurdles can be overcome with the intervention and involvement of more philanthropists and with the support of concerned departments. |
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Let me take this opportunity to express my heart felt gratitude to the committed team at Sneha Kiran, all the well wishers, volunteers, friends and donors for their unstinting co-operation and support extended over the past years. The individuals, industrial establishments, and corporate bodies have been constantly helping the Society and the steady growth of the Society is a testimony to that effect. I am sure with your continued support the Society may able to reach out to many more who need our services. Thank you. |
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| POST SURGICAL MANAGEMENT FOR CP CHILDREN |
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| (Mr. Sanath kumar – In house Physio therapist at Sneha kiran discusses the importance of post surgical management in CP Children) |
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| Management of post surgical conditions in cases of children with cerebral palsy plays a very important role in extracting the maximum benefit of the surgery. |
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| Surgery may be sought in cases such as Talipes equinovarus (Foot deformity) adducted thighs , or flexed knees etc. however it should be resorted to only if all else fail to elongate tight muscles. Ideally surgery should be taken up after the child is over 8 years; else the surgery may have little effect or have to be repeated after the child is older. Though in most cases surgery does, to an extent damage and leave muscles weaker than before – thereby causing pain; it is a better option to subluxated or dislocated joints. This is not likely in children who walk alone, its is more likely in children who walk with aids and most likely in those who do not walk at all. |
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| Management of the condition after surgery is crucial, For instance if surgery is being resorted to for Tendo Achilles tightness -an ankle problem. Achilles needs lengthening , & this should be done before the child is 8 years old. After surgery, the plaster should hold the ankle at neutral position. The child should not wear the cast for more than 2-4 weeks and the child should walk as soon as the cast is dry. |
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| In all cases of CP children where surgery is being pondered upon, there must be good communication between the therapist , the surgeon and the family so that the reasons for surgery are well understood by all . The family and the therapist can then follow the surgeons plan for the child post surgical management . Most importantly special attention and care has to be given to proper positioning, care of the operated part by use of splints/ braces/ calipers etc along with the use of mobility aids. Apart from these it is specially important to follow regular therapeutic programs listed by the therapists for the welfare of the child. |
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| TO COMMUNICATE WITHOUT SPEECH |
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| (Mrs. Anne Paniker - Speech Pathologist - rendering voluntary service as a consultant for Sneha kiran shares views about Alternative Augmentative Communication –AAC |
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| “Will my child speak?” is a question frequently asked by anxious parents of children with cerebral palsy(CP). The answer most often cannot be a simple ‘yes’ or ‘no’. About 60% of children with CP do not develop verbal speech. Reasons for this could be many; severe motor (movement) problems, mental retardation, brain damage to the speech centers of the brain or a combination of these factors. |
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| When a delay in speech development is observed, Speech-Language therapists usually recommend Alternative Augmentative Communication (AAC) methods for communication. |
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| AAC is a means of communication for non-speakers or for speakers with poor speech intelligibility.
Sign language, gestures, pointing, eye-gaze, facial expressions, pointing to pictures in picture charts/books, symbol charts, or Electronic Communication Devises(ECD) are some of examples of AAC. |
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| At Sneha Kiran, most non-verbal children use the Picture charts/books for communication. These charts are individualized as to the number and size of the pictures they contain. The child “talks” by pointing to the pictures in the chart/book. The child is required to take this chart/book with him/her everywhere. Some points to remember: |
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If a child does not speak clearly or does not speak at all, it does not mean that he does not understand what is being spoken. The ability to understand depends upon the intellectual abilities of the child. |
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It is not possible to predict with accuracy if a child will be a speaker or a non-speaker. It is therefore important to employ a total communication approach in early childhood to keep the child communicating rather than emphasize on speech only. |
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A child needs a reason to communicate. If a child is a non-speaker, often decisions are made for him as to what food he eats, what clothes he wears etc. In such a situation, the child will have no reason to communicate. Try to involve the child in simple decision making to encourage him to communicate. |
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Early introduction of AAC does not deter development of speech(if the user is predisposed to speak). In fact research has shown that children using AAC have a greater verbal output than non-users. |
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A child who uses AAC will be slow to express himself. Be patient and wait for him to finish what he wants to ‘say’ If interrupted often, he may not be motivated to communicate and may rely too much on his ‘listeners’ to make sense of what he is trying to communicate. |
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As the child grows, the AAC he is using will need to change too. The AAC has to he constantly revised to meet the increasing communication needs of the child. |
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| SPECIAL EDUCATION FOR THE CP CHILD |
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| (Mrs. Sonia Jacob – Principal of Sneha kiran , shares views about understanding and utilizing the abilities of every child to design specialized educational programs for them) |
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| Learning takes place with the exploration of one’s environment, manipulation of stimulus ,& coordination of all our senses, however since most children with Cererbral Palsy (CP) , a neuromuscular disability which are characterized by motor disability , involuntary movements , speech and communication disorders; have little opportunity or ability to do the above .This deprivation of opportunity would lead to children not being able to cope with their age level counterparts. Education and training of CP children should ideally begin as early as 3-4years of age. The early education program should be designed to stimulate their various sense organs, increase curiosity, interest , learn to socialize (Eg.by acknowledging the presence of a visitor ), gesturing simple needs , expressing likes and dislikes etc. Many behaviors which are instinctive in us have to be taught, to be expressed in a way that people closely associated with the child would be able to interpret. |
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| The Curriculum and training of each child at Sneha kiran has been chalked out through clear IEP’s (Individual Education plan) considering their physical condition, family situations, mode of communication and importantly how the student would be able to use his education- when he completes schooling, what skills would he require to lead a rather independent life, what kind of job oriented skills would best suit his interests and his abilities. Once the above goals are clear upon consultation with parents, therapists and teachers, an assessment of the methods in which the child’s optimum potential can be achieved are laid out. Use of prosthetic aids such as special pencil grips , gaiters , weighted hand cuffs for athetosis (uncontrolled movements) specialized teaching aids and methods like large font text , puzzles of varying difficulties , pictorial representation of text material etc , clear and loud reading , use of educational CD’s , computers have all been adopted in training and have helped our children to a great extent. |
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| Of the 45 children that attend sneha kiran on a regular basis, 20 children are on par with first and second grade, state syllabus and are progressing well. Life skills education such as money and time concepts, simple calculations, basic language and communication skills, skills to interact and socialize with people have been the focus of training of 12 other children who are in the pre vocational training age. |
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| In addition the pre vocational children have also been trained in fine skills such as painting, art works, paper bags , covers , cards and gift envelopes. It has been a great pleasure to see the progress our younger children - the pre academics group have been making. The enthusiasm and interest they have shown to progress have been very encouraging . Children who are progressing well at this level are ‘promoted’ to higher classes where formal academic training begins. |
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| Sneha kiran currently has a staff strength of 6 teachers, in addition students from the Social work Dept – Manasagangothri , Interns students from JSS Institute of Speech and Hearing , and from JSS College of Physio therapy go through practical training in handling these children by extending their valuable time and energy to assist us. The Staff and volunteers go through regular refresher training programs from persons experienced in managing and handling all aspects of disabled persons. |
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| During this academic year our children have participated in various sports and cultural activities such as district level Special Olympics for Assisted walking race, Ball throw , & running race ; Inter school cultural competitions (such as Fancy dress, special games and the like ) and have won laurels which have brought great joy to all. |
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| Outings to various places like amusements parks, visit to normal school, parks, picnics for parents have all helped to give children and families the much needed relaxation and time to unwind. |
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| SUGGESTIONS TO MAKE OUR COUNTRY , A BIT MORE DISABLED FRIENDLY. |
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| (Mrs. Lalitha – parent of a CP child shares a few suggestions that would help to make our society and country more accommodative towards our disabled friends) |
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| Although there are many causes of a child to become disabled, it is for everyone an unwished and unexpected condition that the child and family has to bear with for the rest of their lives. |
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| All hopes and dreams of new parents are tragically quashed with the diagnosis that their child has a disability. In times when bringing up a normal child seems difficult to most, parents and families go through rough conditions in the upbringing of their special child. However a little support from society, state and central governments can ease these difficulties to some extent. |
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At the outset, when parents suspect their child may not be developing according to normal milestones, they should not delay to consult the doctor and have a elaborate diagnosis if required. |
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Once a diagnosis is confirmed, parents should be counseled about the condition of the child and proper information about scientific treatments available, probable progress the child would make if treatment is followed and otherwise, should be discussed with the family. |
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Families should stay in regular contact with doctor and specialists and follow advice about nutrition, health and well being of the child. |
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The central and state governments should look into the financial status of families with a disabled child and where in necessary provide suitable and timely assistance. The necessary ID cards and other privileges that are a right of disabled people is now a cumbersome procedure to go through, in order to avail facilities; hence many needy families do not receive timely help –thereby leading to more complications for the child and the family. The procedures if made simpler would help the families to a great extent. |
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Public places should be made more disabled friendly by providing ramps for wheelchairs , railings for support & modification of public toilets ,Public transport which is the lifeline for many , should make provisions for seat belts , reservation for disabled child and caretaker. |
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Day care facilities and residential/ boarding homes should be set up in collaboration with NGO’s - such homes can come to the rescue of families who want to travel out for short trips , without worries about well being of their child in their absence. |
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Support groups should be formed of families with disabled children/persons. This could be an excellent place for families to share their experiences , difficulties , ponder on solutions to common problems etc. Workshops and seminars about disabilities, management of children with disabilities , treatments ,nutrition and diet , future of these children, are a few topics that would help families a great deal. In addition , yoga , meditation , exercise sessions , picnics and outings for families would give opportunity for stressed families to unwind and relax. |
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Community awareness programs should be conducted by hospitals and NGO’s - society should be made aware of the complications that arise due to consanguious marriages , importance of good health and nutrition of pregnant mothers , regular health check up for pregnant mothers are to be stressed upon. Awareness should spread to the remote villages and towns – various forms of media such as TV, Radio, Newspapers, hand bills, Street plays, local health officers should all be adopted in the awareness drive. Most importantly the attitude and approach of parents with disabled children should be positive, they must remember that it is not a punishment to have a disabled child, it is a very special calling , we must not ever give up hope and keep working to provide a healthy and comfortable life for our child as long as they live. |
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| You can make a difference in a child’s life by…. |
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Volunteering time |
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Sponsoring for therapy aids for a child |
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Sponsoring an Annual program for a child |
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| For further information contact: |
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| Mr. A. .Raghunath (President) Ph:9845120002. Mr. A.P.James (Secretary) Ph:98440 43965, 0821 – 2581113. |
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| All Donations are exempt under 80G of the Income Tax Act. |
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