Effects of Cerebral Palsy on the Victim's Family

Cerebral palsy which is a broad term for numerous conditions which occur before or during birth. The formal diagnosis has been around since 1861, but the condition is considered to have existed ever since children have been born. Pre-term babies are at higher risk for cerebral palsy than full-term babies. Cerebral palsy is marked by diminished muscle control; visual, auditory and speech impairments; and learning disabilities. This condition is often recognized in the first few years as the child is not developing the skills other children her age have developed. Cerebral palsy will not worsen as the child grows. Your child may require expensive long-term medical care.

You are not the first family to have their child diagnosed with cerebral palsy. You are not the first family that feels a huge range of emotions due to their child's diagnosis. Where to begin? Don't rely solely on your child's pediatrician for support and information. Go to specialists who focus on cerebral palsy research, support, therapy options and adaptive equipment. In communities large and small, there are agencies to help your family as you begin this process. Contact your pediatrician, local children's hospital or pediatric ward for a point to start investigating your child's options. You can also try agencies that focus on children and families. State plainly when calling "I have a child diagnosed with cerebral palsy. I am looking for information and support agencies in the area. Can you help me?" They will have a list of referrals to give you if they aren't able to help you. A large number of these agencies are staffed fully or partially with parents who have a child with developmental disabilities. They understand where you are right now and will walk you through this process.

Talk with your doctor about what treatment options are available for your child. Keep a records for the following areas: • Financial resources--insurance coverage, Medicaid options if your child qualifies, Social Security, state insurance for children with developmental disabilities, grants or scholarships for equipment needs, camp or vacation opportunities for your child and family. • Medical conditions that your child has had--Include colds, fevers, surgeries, rashes, procedures, and changes in your child's personality or behaviors. • Dental • Vision • Occupational therapy • Physical therapy • Speech therapy • School information--Include information on preschool, elementary school, any adaptive equipment your child will need, copies of all school reports and your child's Individualized Education Plan (IEP). • Information about your child's case manager and community support worker • Support groups, play groups and other activities your family choose to participate in • Phone numbers and addresses of agencies, other parents you have connected with, and other contact information regarding your child's care Keep this information in one place. This will lighten the stress you may feel when given a large amount of information that overwhelms you.

Your child may be eligible for community support services. The care can include personal hygiene services as well as services that help your child work on developmental skills. As a parent you and your child are the most important part of the care team. This team is made up of a case manager, service provider, community support worker, your child's doctor and teachers. Another benefit of community support services is the respite care you are eligible to use, to give you and your spouse some time together alone to relax and recuperate. The case manager works on your child's behalf managing the care that your child will need. This includes assistance with funding for services, obtaining a service provider and working with the service provider to find a community support worker who meets the needs of your child. The case manager takes a large portion of the coordination of services off your shoulders. The service provider agency takes a large portion of the physical care that your child requires off of your shoulders. You can share your time with the rest of the family and be confident that your child is being cared for properly. These services are provided by state and federal funds in most states. Families do not pay for these services.

Your feelings of guilt, sadness and fear of the future are common. You can overcome them with help from others who have experienced what you are experiencing or have been trained to assist families with children with developmental disabilities. No longer are families expected to be the sole caretaker of a child with cerebral palsy. As a parent or family member, there are numerous support systems available. The quality of your life and your child's life can be enhanced by those whose job is to assist your family.