Cerebral Palsy: What to Do After Your Child is Diagnosed with Cerebral Palsy

You are the parent of a child with Cerebral Palsy. That can be a terrifying and difficult concept to process. I know this because I am the mother of a charming nine-year-old boy who also happens to have Cerebral Palsy. After a traumatic birth, my son spent 10 days in the NICU. While we understood that his birth could cause serious health issues for him, we were still surprised when he wasn't reaching some normal milestones. At three months, he was participating in six hours of therapy per week. We needed to get a firm grasp on Cerebral Palsy and how it would impact our son's life and our family but quickly!

The purpose of this article is not to educate about the diagnosis of Cerebral Palsy; instead it is to give you a checklist of things that you, as the parent of a child with Cerebral Palsy needs to do as soon as possible. Cerebral Palsy is non-progressive; it will not worsen over time. However, secondary musculo-skeletal issues can worsen as your child grows and develops. Early intervention is truly one of the most important steps you can take immediately to give your child the best future possible. Early intervention can be hampered by the reluctance to give a firm diagnosis of Cerebral Palsy until the age of three. Even if you do not have a clear diagnosis but you and/or your physician is concerned about a future CP diagnosis, you should follow this checklist anyway. The earlier you completely understand what your child may be dealing with the better off your precious son or daughter will be.

What to do when your child is diagnosed with Cerebral Palsy: United Cerebral Palsy

One of your first steps is to contact your local chapter of United Cerebral Palsy (UCP.) You can go to the National UCP.org for a plethora of information on all things related to Cerebral Palsy as well as information about your nearest local chapter. Bookmark this site as it will be a point of reference for you many times. When you contact your local chapter, simply tell them why you are calling and ask how they might be able to help. They have a wealth of resources at their disposal.

What to do when your child is diagnosed with Cerebral Palsy: Educate yourself

The first book I purchased after our son was diagnosed with Cerebral Palsy was entitled "Children with Cerebral Palsy: A Parent's Guide" by Elaine Geralis. We actually received this book from our local UCP chapter, but if yours does not have it available, you can find it online. There are many books about CP, but I found this one to be particularly helpful and my copy is now worn and dog-eared! I found that this book addresses most all issues relating to having a child with Cerebral Palsy.

What to do when your child is diagnosed with Cerebral Palsy: Early Intervention

Early intervention with therapy and other services is absolutely critical! Most states have early intervention programs that provide therapy and other services for all children who qualify for services because they are not meeting age-related milestones. These services are generally provided at little or no cost to the family. Early Intervention services are for children from age zero to age three. Once your child turns three, the school system will take over intervention services. By clicking here you can find resources for early intervention programs by state. Early intervention is critical and you cannot make up for lost intervention time as your child grows. Do not regret your choice not to check into services; look into your state's program immediately and make the phone call to have an assessment.

What to do when your child is diagnosed with Cerebral Palsy: Medicaid & Medicaid Waiver

In 2003, the CDC concluded a study that found that the economic cost for people with Cerebral Palsy in the United States is $921,000. Many children with Cerebral Palsy will require therapies such as Physical Therapy, Speech Therapy, and Occupational Therapy in addition to a variety of medical interventions. Most health insurance policies will not even begin to cover the cost of services required for the average child with CP. Medicaid Waiver is a program for citizens with all types of Special Needs that "waives" income qualification requirements to enroll in the state Medicaid insurance program. Medicaid and Medicaid Waiver programs are operated at the state level and are partially funded with federal dollars. Consequently, there is always a budget shortfall in funding Medicaid Waiver programs. As with all government programs, the Medicaid program is difficult to understand and navigate. However, it is imperative to you look into the Medicaid program in your state as soon as possible because most all states have waiting lists, some over 10 years. The sooner that you place your child on the waiting list, the sooner your child will be covered. As with early intervention, this is one issue you cannot afford to delay investigating. To find Medicaid/Medicaid Waiver information for your state, start by asking your local UCP chapter for information on applying for these programs. You can also perform a Google Search for Medicaid/Medicaid Waiver and your state.

What to do when your child is diagnosed with Cerebral Palsy: Network

When your child is diagnosed with CP, you immediately enter into a unique club: parents of children with CP. The Mayo Clinic claims that in the United States and Europe, Cerebral Palsy occurs between 2 and 4 out of every 1,000 births. No matter how empathetic your friends and family, they cannot truly understand your situation as well as other parents of children with CP. As your child grows, you will meet and develop relationships with many people in your new club. Never underestimate the importance of a good support network. You will lean on them when you need support and you will provide a broad shoulder for them when they are in need. You will share information on good therapists and medical specialists, procedures and medical equipment, schools and IEP's. Reach out to parents and begin developing your crucial network of families dealing with Cerebral Palsy.

There are many issues you will face in raising a child with special needs. The five steps I presented here were learned through personal experience. Some of the steps, like Early Intervention with our state's First Steps Program, we jumped into immediately with both feet. However, the Medicaid/Medicaid Waiver step was one that I was not even aware of until our son was about two-years old. This is a step I wish I had been informed about. It is my hope that this article will help you to deal with the emotional diagnosis of your child's Cerebral Palsy by giving you concrete steps to take and an immediate action plan to follow. Welcome to our club for parents of children with Cerebral Palsy! It is not a club that we long to join. However, once we become members, we realize that with the help of other parent members, we can raise our beautiful, special children to realize their full potential and treasure the journey we have embarked upon.

To read this writer's article about Sign Language for Children with Cerebral Palsy click here.

Sources:

Personal experience

CDC Study on the Economic Impact of Cerebral Palsy

United Cerebral Palsy (UCP)

Mayo Clinic - Cerebral Palsy