How to talk about Cerebral Palsy: A guide for parents and caregivers

By Amy Hogan

Parents and caregivers often find themselves in the position of explaining Cerebral Palsy (CP) – Hōkai Nukurangi to teachers, extended whānau, coaches, friends, or community members.

These conversations can feel daunting as you may be talking about CP in different contexts and with different levels of detail.
Explanations will shift depending on the person’s stage of development, the family’s comfort level, and the context of the conversation. Many families don’t often talk about CP, but having a clear, simple explanation can help others understand how best to support the person in everyday life.

Broadly speaking, the approach is to talk about CP as a condition (what it is and isn’t), how CP specifically affects the person you care for, and things that people can do that are or aren’t helpful.  Remember that CP is a part of their story and therefore, should be talked about in a way that they, and you as parents, are comfortable with – with whatever level of detail they/you choose.

Telling other people’s stories

Being responsible for talking about a condition on behalf of someone else can feel daunting and intimidating. Especially when parents and whānau are also dealing with their own feelings of grief, concern, or worry.
However, it’s important to remember that you don’t need to learn how to talk about CP all at once. The process can be slow and gradual, building up from those initial conversations with specialists. These are some things that our members have found helpful when considering talking about CP on behalf of a family member:

• Keep the information relevant to specific contexts, don’t just list an entire picture of the CP unless you need to e.g. what does ‘CP in the context of school’ mean?
• Encourage people to include their family member with CP in general conversations, regardless of their communication abilities or comprehension.
• Have CP as part of the story rather than listing out a collection of medical problems. For example, “Donny loves music and his pet dog. His CP affects him in these ways……”

Families can often feel a level of guilt that they have to speak on behalf of their family member, regardless of such things often being a necessity. An important aspect to remember is that the story around the person’s CP is something that will support and aid them in the future. The more that is known about specific needs, likes, and dislikes, the better the support.

What is CP?

Cerebral Palsy is a permanent injury to the developing brain, typically occurring before, during, or shortly after birth. It affects movement, posture, and muscle control, and may result in different types of communication methods e.g. verbal or AAC (Augmentative and Alternative Communication).

Two people may both say they “have CP” while having completely different physical, cognitive, sensory, and communication experiences. Some people have visible movement differences; for others, their CP is less obvious. Some have co-occurring  experiences like pain, fatigue, sensory processing differences, epilepsy, or challenges with coordination, while others may have none of these.

Regardless of how visible their experience of CP, people need the specifics of their condition acknowledged and understood within the everyday context, such as children with CP needing extra rest or finding playdates cognitively fatiguing.

Describing how CP impacts the person living with it

Parents and caregivers can describe CP in terms of how their family member moves, learns, communicates, and participates. Learning to talk about CP on behalf of someone else can be like learning a new language in terms of which words, terms, or concepts are most helpful. Also, the ways in which CP is talked about may change over time and different information may be relevant in different contexts.

For example:

• “CP makes some movements harder for him, so he uses a walker for balance.”
• “Her muscles get tight quickly, so she needs stretch breaks throughout the day.”
• “He processes information at a different pace, especially when he’s tired.”
• “She uses a communication device to express herself, and she has a great sense of humour.”

Describing elements of CP that may need support

Cerebral Palsy involves a variety of support needs that may evolve and shift over time. Support needs are specific to each person, but there are general trends when talking about the type of support that people need in different contexts.

Common support needs include:

• Movement and mobility adjustments
• Fine motor support (handwriting, small objects, opening containers)
• Communication support (time to respond, reducing noise)
• Cognitive processing support (clear steps, repetition)
• Energy management
• Environmental adjustments.

What is not helpful when providing support                    

People can be very earnest in their desire to help. But that doesn’t always mean that friends, families, and acquaintances will get it right all the time, especially when they may be relying on quick Google searches or second-hand information.
Members have told us that the scenarios below aren’t especially helpful. As you and your family start to understand CP, it’s important that you respectfully convey what is and isn’t helpful when help is offered.

Examples of unhelpful, often well-meaning, assumptions include the following:

• Assuming that CP limits intelligence or perception
• Stepping in without checking
• Overloading the family with online resources
• Assuming all CP experiences are the same.

Whoever you are talking to, in whatever circumstances, talking about how CP directly affects the individual provides more knowledge than only giving a general overview.
It may be a good idea to combine personal context with basic information about CP (available on our website) and what supports are needed as a whānau.

For example, communication styles and differences within CP are often misunderstood. Of course, people who are new to CP or disability always want to get the nuances right the first time. However, the important thing to consider is that people in our lives adapt their approach based on what they learn.

Your family will be learning alongside the people that you are informing about CP. Therefore, the comfort level with the different terms and descriptions will change and adapt over time. You may talk about CP differently during the first period of diagnosis versus when the child and young people are older.

Summary points

There are some key points to remember if the conversation is brief and you don’t need, or want, to go into detail about the nuances of living with CP and the everyday considerations:

• CP is a permanent injury to the developing brain
• CP varies widely between people
• Support works best when tailored to specific needs such as movement, communication, or fatigue
• Work towards having clear, practical, strengths-based conversations about CP
• Not all aspects of CP are visible, and parents often face intense information overload.

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* Amy Hogan is the Cerebral Palsy Society’s Researcher and Member Support Advisor.