I have the privilege to work with cerebral palsy (CP) and hypoxic-ischemic encephalopathy (HIE) children. The children I work with are of varying levels of mobility, cognition levels/abilities, verbal/non-verbal, sensory losses, dual and/or multiple diagnoses secondary to the CP. They come from all areas of the country and varying family environments. Currently, I have CP cases ranging from a very young child who is non-verbal, non-mobile, cortical blindness, g-tube dependent and oxygen-dependent, who requires suctioning 4-6 times at minimum every hour due to his inability to manage his own secretions. On the other end of the spectrum, I have a young boy, who requires a walker and braces for mobility but who is cognitively, verbally, and developmentally doing very well. He is attending school in regular classrooms with the traditional curriculum, requiring minimal assistance for classroom work and his only “pull out for special class” is during physical education. He has school-based physical and occupational therapy.
I find not only do these child vary in their physical, developmental, communication and cognitive levels, but each have their own individuality based on their family environment, interpersonal relationships within the home, birth order, number of siblings, etc. Each case is individual and seldom are any two the same. While they may have some similarities, most children have their own paths dictated not only by the medical abilities, but the drive of the child, family and providers, and the team approach or lack thereof that makes a huge impact. Collaboration is the key in proper projection of the needs for this young boy and his family. Strong consideration should be a priority for the significant loss placed upon all of them for the loss of the level of functioning, quality of life and contribution he was able to provide for his own care and interaction with family and peers. Due to his age and level of previous achievements, this will be a difficult situation for him, which can lead to severe emotional issues due to depression, frustration, and the loss of function he once knew. This is unique to most CP cases, as they are aware of the differences in their lives and those of children without CP. But this child was high functioning and has lost his ability to care for his needs, desires and interactions.