A guide to overcoming these barriers and ensuring an improved quality of life is included in this article, along with a comprehensive description of cerebral palsy, the challenges faced by children with the condition, and their parents.
Cerebral palsy is the most well-known physical problem analysed among paediatric age group. It is vital to consider that cerebral palsy is an extremely long-lasting impairing condition, and this long-lasting condition poses extra difficulties and needs for the guardians that might be overpowering and need reasonable help.
What is cerebral palsy?
Cerebral palsy occurs when a child’s cerebrum is permanently damaged due to lack of oxygen. It can occur during the pregnancy or post-pregnancy period because of different causes. A portion of the risk factors incorporates maternal infection during pregnancy, prematurity, birth deformities, jaundice, or post-pregnancy diseases.
The location, size, and level of mental injury determine how serious it is. Overall development, posture, and balance are most affected; extra issues may include mental disabilities, epilepsy, communication, and behavioural issues.
How do we detect cerebral palsy in children?
Most babies delivered prematurely or with brain injury are routinely monitored, but parents first detect abnormal growth.
Following are the signs suggestive of cerebral palsy.
- only use of one side of the body
- feeling stiff and tight in general.
- Not achieving developmental milestones at the appropriate age.
What kinds of cerebral palsy are there?
There are many fundamental types of CP
- Dyskinetic: uncontrolled movements.
- Ataxic: difficulties in coordination and balance.
- Spastic: increased muscle tone
It may also vary depending on the involvement of the limb.
- Hemiplegic: upper and lower unilateral extremities are affected.
- Diplegic: The lower limb is affected more than the upper limb.
- Quadriplegic: All four extremities are affected.
Typically growing children achieve freedom in their self-care activities through the central milestones. However, children with cerebral palsy usually require constant support. They are limited in their day-to-day activities by caregivers and parents, which causes the parents to take up a different difficult role.
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The 5 phases of child development
Childhood development passes through 5 phases, namely prenatal (conception till birth), infancy and toddler (0-3 yrs), early childhood (3-6 yrs), middle childhood (6-11 yrs), adolescents (11-19 yrs).
For children with cerebral palsy, each of these phases is marked with specific challenges and follows a specific path regarding the pace, goal, and achievement compared to their peers. For example, the ability to walk is typically achieved between 9 and 17 months, but in children with CP, the average age of this is 19 months.
Challenges faced by parents while caring for cerebral palsy patients and how we can support them as a community.
Caregiving for a child with cerebral palsy is a journey that has a completely different path, experience, and challenges than that of a normally developing child. Some common challenges that such parents face are:
- Daily care challenges: the child’s clinical condition frequently forces the parents to perform extra tasks such as attending therapies, supporting therapy sessions at home, and continuous hygiene/food care. Many reported having to choose between working full-time or being a stay-at-home parent.
- Psychosocial challenges: Feelings of guilt, grief, anger, and inequity may sometimes arise. Mental fatigue and breaks at moments can occasionally happen with factors such as child-specific needs and the constant worry of being able to satisfy and provide the best care, building constant mental pressure.
- Social challenges: social challenges such as comparison, stigma, and exclusion are unavoidable social factors that the parents deal with regularly.
Community support for the parents.
- Increased awareness about the challenges and the need for information to be provided to the parents and the community about cerebral palsy and its management.
- Support groups for parents where they can be comforted, heard, and share their thoughts, insecurities, and doubts while being guided.
- Prioritising personal well-being through supporting such parents strikes a balance between their resources and challenges.
How to support children with cerebral palsy: tips for parents
- Aiming for social opportunities: A simple process such as getting to know other people through engagement and social interactions goes a long way in moving forward toward reducing a child’s social anxiety and improving relationships.
- Make sure interaction and activities involve children and adults as well: Although participating in activities with disabled children is a great realization for the child that they are not alone, as the child grows more able-body children may enter their lives, and it is beneficial for them both to see that they are alike in many parts even if some people interact differently.
- Support and cultivate the child’s interest: If a child develops an interest, it is a great opportunity to be social. Engaging with interests, in addition to being fun, also provides a sense of achievement and enhances confidence. It may develop self-worth, self-image, and self-identity
- Nurture a child’s true identity: children with disabilities are often left with little room to see themselves beyond their disabilities. Children should be encouraged to think from another view. They may be limited in certain capacities but may be great soccer players, musicians, painters, or chess masters.
- Establish safety limits: In an attempt to be socially acceptable, the child may want to participate in activities that might not be safe. Setting limits will help the child understand that relationships should be free of any pressure. At the same time, empowering the children is also important, and a balance is to be provided.
- Managing with rejection: Everybody faces rejection, and this important lesson should be taught to children early on. Let the child know that when rejection occurs, it is more about the other person rather than about them. At such times, reinforcement of self-worth with simple comments such as” their loss” and “they would have found a wonderful friend in you” would help establish the rejection as a misconception.
- Focus on what a child is able to do: A child may be limited in his capacity to eat, drink, or walk but still may greet and interact with others and be able to express his ideas. Stressing on common grounds can help the child see himself as a part of the large world.
- Talk to other parents: Talking to the parents of other children with disabilities is an encouraging force not only for them but also for children.
- Encourage the child to share their story: A child with cerebral palsy may never speak up. However, sharing the reason why and how they are different may show everyone that they are capable of speaking and relating to everyone and that they are more like everyone else than they are different.
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