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RESEARCH Dispatches from a Different Galaxy The “vast galaxy” that is the Cerebral Palsy Spectrum. By AMY HOGAN not suit her child because her child simply doesn’t have the function to enjoy them. Similarly, somebody who’s highly mobile and verbal may not see themself reflected in the Cerebral Palsy group. This sense of exclusion can make an already lonely experience even lonelier. As a researcher, I’m advocating for more specific information that relates to the different levels and experiences of Cerebral Palsy, eg what does leisure time look like for level I to V GMFCS. The Gross Motor Function Classification System is used to describe a person’s gross motor function and the sort of equipment or mobility aids used. Here are some of the main areas where the experience of Cerebral Palsy can differ and why that is so important. This is based on a Starship Child Health overview of Cerebral Palsy “scales” or functional classifications. If you would like the scales in full, feel free to email me at amy@cpsociety.org.nz • The GMFCS (Gross Motor Function Classification System) This scale primarily looks at how a person gets around and their primary method of mobility. The scale goes from I to V and indicates different aspects of moving, and the different use of equipment or mobility aids to assist them. • The MACS (The Manual Ability Classification System) This scale measures how a child or young person living with Cerebral Palsy uses their hands to do functional tasks like writing. It also measures how much assistance they need if it cannot be done independently. • The CFCS (Communication Function Classification System) This communication scale reflects the ease with which people are able to communicate within different settings. It is well known that Cerebral Palsy can affect speech. But there are degrees to the severity, from being completely nonverbal to having difficulty with speech only in particular settings. However, it is important to note that being nonverbal does not mean you cannot communicate meaningfully. Communication includes speech, gestures, facial expressions, and augmentative and alternative communication (AAC). The title of this article comes from a conversation that I will never forget. The mother of a Cerebral Palsy Society member living with severe Cerebral Palsy was telling me that she feels like somebody from a different galaxy within the Cerebral Palsy community. The metaphor always struck me. But what was beneath it was even more important to hear. Most people with any knowledge of Cerebral Palsy will understand that it is a spectrum, meaning that the diagnosis looks different for everyone. However, this spectrum is not often talked about in terms of how it affects people’s everyday lives and their needs. The mum was specifically saying that most services do 16 | THE REVIEW JAN–APR 2022