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My Child has Been Diagnosed with Cerebral Palsy. Now what?

Cerebral palsy (CP) occurs in one out of every 500 full-term births, and in 33 percent of premature births. Although there is no cure, there are ways to meet the needs of a child diagnosed with CP. This article will provide you with the information you need to help you through the process—from diagnosis to ongoing disease management.

What a diagnosis may mean to your child
Become your child’s care manager
Taking care of yourself

What a diagnosis may mean to your child

When a child is first diagnosed with CP, the condition will be classified according to the type of movement disorder (spastic, Choreo-Athetoid, or mixed-type CP) and/or number of limbs affected. This means that a CP diagnosis can lead to a very different experience for each individual affected by it. Talk with your child’s doctor to gain a better understanding of the specific diagnosis. You may want to start by asking the following questions:

1. Why this diagnosis and not another? (Could it be another condition? Why or why not?)
2. How many limbs or other bodily functions are affected?
3. What kind of health problems will accompany this diagnosis?
4. How will this affect my child’s development?

Although your doctor cannot predict exactly how your child will be affected, he can still give you an idea of what to expect. Being aware of the possible health complications can help you better prepare for your child’s future. Find more questions to ask your doctor from the Cerebral Palsy Association of British Columbia.

Become your child’s care manager

While there is no cure, the physical disabilities of CP can be minimized and managed over time. Your child will likely have a health care team consisting of several specialists and allied health professionals. Make a point of asking your child’s primary treating physician who these professionals will be. Knowing each of their roles can help you schedule the right appointments at the right time, and will also help you come up with a plan to properly manage every aspect of your child’s care. Learn more about the types of health care professionals that may be part of your child’s care team at the Ontario Federation for Cerebral Palsy website.

As a parent, you are your child’s main advocate and are a principal player in your child’s health care team. This means you are the best person to take on the role of care manager. It is up to you to determine what you feel is best for your child and family, from deciding which specialists are essential to your child’s care to looking into special needs programs and seeking out respite services.

Taking care of yourself

While taking care of your child’s needs, it can be easy to neglect your own. It is important to make time for yourself and to focus on your emotional and physical well-being too. If you need time to recharge, you can take advantage of respite services in your community. Contact your provincial CP association to learn about the respite services available near you.

Leaving your child with competent and understanding respite workers should be your first priority; so do your research and find out how to communicate both your child’s needs as well as your own expectations. The Easter Seals Association offers provincial programs that may provide some additional services and assistance.

The table below will provide you with a list of associations that offer information and resources for parents of children with special needs like CP. Special needs programs by province are also listed.

Having a child with special needs may mean that your family is likely to incur some additional costs. To help offset these costs, the Government of Canada offers a Child Disability Benefit.

While raising a child with a disability presents unique challenges, knowing what questions to ask and what help is available can help you better manage your child’s condition and better prepare for the future. So do your research, stay informed, and don’t forget to take some ‘me time’ along the way.

Key Websites:

• Service Canada: Services for people with disabilities

Related Articles:

• Allied Health Professionals: Expand your health network
• Caregivers
• Managing a Disability: Locating services, support, and resources

References