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Our daughter with Cerebral Palsy (CP) is a compelling story of Protasio and Happy Chipulu’s experiences with managing a child with CP. They have experienced challenges as well as joyous and beautiful times with their daughter. Christabel turns 30 on 16 December, 2019 and the book “Cerebral Palsy, A parents’ Guide to managing Cerebral Palsy” is dedicated to her. We thank God for the blessings bestowed on our lovely daughter.
Our daughter with Cerebral Palsy could not continue with school in 2015 because of her physical disabilities especially coordination of her limbs which drastically affected her ability to write on her own. She stopped school in grade 11 and since then she has been restricted in her activities especially travels outside the home. She goes to church on Sundays with the family and sometimes accompanies the family in social outings. She is often restricted in dealing and playing with family and friends, and other activities due her disabilities.
Love for our daughter with Cerebral Palsy prompted us to write about our experiences on “Living with Cerebral Palsy: A Parent’s Guide to Managing Cerebral Palsy’. This is our experience in the management of our daughter with Cerebral Palsy. It provides information on managing a child with CP and the daily challenges of the condition. The book was written some years back when Christabel was young and the physical challenges were profound.
When you have a child with CP, you are on the road to understanding cerebral palsy and you belong to the “cerebral palsy community”. However, each member has his or her own understanding of cerebral palsy. Although the understanding of cerebral palsy may vary depending on many factors including the severity of the condition. However, there are certain common goals which parents may aspire to. For instance, independent living for a child with CP.
Our journey of living with CP started in December, 1989 when our daughter was born. There were some complications at birth and eventually it was established that our daughter had CP at about one year old. CP is a term that refers to a group of long-term or permanent disorders, which affect the brain and they appear during the first few years of a child’s life.
It is a condition that hampers and affects the child’s ability to appropriately coordinate normal body movements. This happens because the muscles tend to be weaker, floppy, stiff, and rigid. For our daughter, lack of oxygen to the brain was considered to be the main cause of the CP.
We tried all possible treatments but we realised that CP was a condition and we had to live with it for the rest of our lives. We had to devise some coping mechanisms. The Chipulus have 12 basic pieces of information on CP for parents with children with cerebral palsy. Cerebral Palsy is long term condition and one has to live with it for the rest of his or her life. The Chipulus’ use the 12 principles in handling their daughter with the disability. The principles cover all aspects of human life such as doing some search on the new treatment of CP, hope, faith and trust, helping the child with homework, letting the child know God, asking for help, giving encouragement and boosting the self- esteem of the child with disabilities. There is also a need to have some good time, and setting objectives and carrying out some evaluation on the development of the child.
With the help of our principles we discovered with pleasure that the intelligence of our daughter is very good and she has been able to sit for competitive national academic examinations which she passed with ease.
As a result of our work our daughter with CP we have become activists for advancement of persons with disabilities. As activists we assist our daughter and others on the following:
- How to communicate with persons with CP, that is how to know about their needs, problems and desires.
- How to clarify the kind of life they wish to lead and how to live with others.
- How to understand better what goes on in themselves (emotions, feelings, desires, etc.) and how to share with others.
- How to understand better the people around them.
- To assist in carrying out physical exercises for children with CP.
- To organise get together for children with CP and some outings to places such as shopping malls, zoos and museums.
- To share the word of God with Children with CP so that they become good Christians.
Based on the experience of the Chipulu family, a Special Educational and Training Trust will be set up to help children with CP. The Trust will be a place where persons with impairments can be helped in terms of special education, physiotherapy, speech therapy and many other interventions which can help them to achieve a higher level of personal self-sufficiency. The Trust will be established by the Chipulus in association with the Cerebral Palsy Association of Zambia.
Persons with disabilities in Zambia have been affected by the poor economic situation in the country and they are not accorded much priority in the national planning and development. Vocational skills training opportunities for persons with impairment are very few. Unemployment is high, thereby compounding the problems for both parents and persons with impairment.
In this book, we have given details on our daughter with cerebral palsy and how we have been managing the condition. Our experience compels us to plan for the establishment of a centre of excellence for children with disabilities. We have also given stories on CP starting with our own story. We have also given challenges and coping mechanisms of disabilities.
Our experiences are not exhaustive and it does not attempt to answer all the questions related to the management of CP. These are our personal experiences as a family. All the short comings in the management of our daughter with CP are our responsibility. Our experiences may be different from those of other families and some of the information may be outdated but we shall endeavour to update the information.
Protasio and Happy Chipulu
Protasio in his book explains everything you need to know to cope with persons of CP
Protasio Chipulu is proud father of Christabel a child with Cerebral Palsy and author of “Living with Cerebral Palsy: A Parent’s Guide to Managing Cerebral Palsy“
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