Take my disability and make it work. Do not scorn me, for it may hurt.
You see, I am teachable, trainable and educable. In fact, I am useful and quite capable.
Oh no, not helpless or problematic! But I am very active and quite energetic.
Do not cast me into an eternity of total dependency, Or lure me into a world of fantasy.
Certainly, I have a disability, And I do not deny its reality.
Nevertheless, I must not resign to a life of pity, Or reside on the fringes of society.
Use the skills that I have got. Do not focus on what I have not.
Of course, I am aware of my limitation. Yet, I am a part of God’s wonderful creation.
Therefore, please accept me with “This Ability” of mine, Then let the full range of my potential shine.
Written by: William E. Lightbourne (March 1990)
Few Suggestion & guideline by Dr J K Jain for the welfare of children with cerebral palsy
Life expectancy in cerebral palsy: Life expectancy of cerebral palsy children with walking capability is equivalent to normal population so our aim of management in cerebral palsy toward regaining ambulatory capability
Causes of fast deterioration in health of adult with CP : Obesity, Osteomalacia & Physical fatigue lead to fast deterioration in adult with cerebral palsy so we should give more importance all these fact in ideal management of cerebral palsy.
Inclusive education & job opportunity : There should be strict international guidelines for each country, regarding special provisions, arrangements and facilities if a person with cerebral palsy wants to be in job and in schooling.
Expenditure in cerebral palsy management : Treatment of cerebral palsy doesn’t require lots of expenditure if parents are careful, educated, get training in therapy programme, no costly investigation is prescribed, specialist and therapist are dedicated to their jobs, government and social support system is there and you have a good life planning.
Contribution of Charity organization : We can not eradicate the cerebral palsy like polio or other diseases, but if we try our best then we can make most of the children with cerebral palsy independent and socially acceptable. So there should some provision from WHO/ UNICEF / other international charity organizations to come forward to provide the aid to all underprivileged children with disability.
Training of therapist in developing country : In developing countries it is difficult to get well trained therapist specially for cerebral palsy children. It is a request to world authorities working in cerebral palsy management that there should be free courses for therapists working in this field as many of them can not afford costly training programmers but are dedicated to work. Because it is the therapist, who gets children with physical disability at the earliest and can give lots to these children. underprivileged children of society having cerebral palsy.
Group Discussion in cerebral palsy : Group discussion between parents of children with cerebral palsy and between adult with cerebral palsy have a great impact on their confidence and morale. It opens newer horizons of positive thought and inspiration. Only thing to remember is that few parents/ adult with CP of strong mental confidence should be there in each group.
Group therapy in cerebral palsy : Group therapy in management of cerebral palsy boost up confidence level in parents, therapist and children. Cooperation of child in therapy improves a lot, understanding and patience of parents improves and the therapist also has better chance to learn from others.
Right of treatment for every child with cerebral palsy : Every child should be a given a chance for their improvement by all means irrespective of their disability, age, gender and socioeconomic status. Even a small improvement matters a lot for them.
Parental training in ADL and therapy : Training of parents in all required therapy for their own child along with ADL activity should be the integral part of every management protocol, because it boosts up their morale and make them psychologically much stronger.This concept gives rise to long term benefit to their child.
Provision of CP Village in every country : Every province & country should develop CP Village with facility of temporary shelter arrangement for parents with children with cerebral palsy, for in-house training programme, advance therapy center with well trained developmental therapist & rehab personnel, hospital equipped with all ultra modern care for special children along with team of different specialist like Pediatric orthopaedic surgeon with training in advance surgical management of cerebral palsy along with all medical team required for assessment and management of cerebral palsy.
International law for cerebral palsy treatment : It will be very good to have some concrete policy from WHO/ UNICEF or any international authority to ask every country / state to formulate a definite plan for medical, social upliftment of children with cerebral palsy, as we know that we can not prevent occurrence of cerebral palsy totally.
Independency is the right of special children : Mission of world community is to make the children with special need, so special that they are needed by the society as its integral part, by making them independent the stand & walk on their own not waiting for some one to drag their chair.
Early Intervention in CP : Life cycle of cerebral palsy children can change in any direction depending upon intervention they got. So concept of early intervention in the form of therapy in the early age, and single event multi level surgery just after the maturation of walking skill is necessary. When therapist & parents feel that the child has started developing contracture and not progressing well any more with therapeutic protocol, early surgical intervention gives rise to excellent outcome in most of the children with spastic cerebral palsy. All these children should continue their physical activity even after getting pubertal maturity. Our aim of management in all our children should focus towards independency in the form of ambulatory capability, job opportunity, social responsibility and decision making. We should avoid prescribing wheel chair as much as possible, if we can make them independent by any means.
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Samvedna trust blogs on cerebral palsy : https://samvednatrustcom.wordpress.com