By Chris Croll
This interview with the mother of a child who has Cerebral Palsy is one in a series that profiles children who have conditions, diagnoses or temperaments that require specialized support from parents, teachers, coaches, therapists, friends, family members and other influential people in their lives. The goal of these profiles is to elicit greater empathy from the community for these “high-needs” children and their families.
CROLL: What does it mean to have Cerebral Palsy (CP)?
Erin: Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by damage to the developing brain, most often before birth. Our son had a massive stroke in utero. Doctors don’t know what caused the stroke. He was diagnosed with CP at 11 months old. We were told our son would never walk or talk. But today, at age 9, he is doing both very well. As a result of the stroke, our son now has epilepsy. He has experienced more than 80 seizures, most of which were grand mal seizures, causing a loss of consciousness. Many of his seizures have required emergency medical services and resuscitation. We’ve almost lost our son more times than I can count.
CROLL: When did you realize this was an issue?
Erin: We first noticed he wasn’t moving his right side at six months old. We were given the diagnosis of stroke-causing-cerebral-palsy five months later. Our son’s first seizure was at age two. It was a grand mal seizure that lasted for four long hours and required intubation and a medivac to the PICU at Fairfax Hospital.
CROLL: How do your son’s exceptionalities impact his ability to be successful academically and socially?
Erin: Our son’s condition affects the right side of his body. He has daily challenges with the limited use of his right hand. Basic activities like cutting, gluing, cooking, sports and self-care can be a challenge. He also has a right foot-drop that gets in the way of sports and running. Socially, our son is very engaging, but he is much smaller than his peers and he has to have adult supervision at all times. Fortunately, our son is very bright, so his limitations are mostly physical.
CROLL: What are some of the unique parenting challenges you face?
Erin: The biggest challenge for me is the fear. Seizures are unpredictable and terrifying. Each seizure carries the risk of more brain damage and death. Our son has to wear a pulse oximeter and sleep next to a baby monitor at night. Every time he has a seizure, it’s traumatic for our entire family.
CROLL: What are some of the challenges your child faces from being different?
Erin: Because of right side spasticity and tightness, physical challenges impact him every time he moves. But he also has the challenges of medication side effects which include headaches, dizziness and drowsiness. Another challenge he has is that he spends a lot of time being told what to do by other people including his older siblings, his parents, his therapists and his many doctors. He really doesn’t get a lot of relaxed, spontaneous time to play.
CROLL: What type of education environment does your child attend?
Erin: I have home schooled our son for three years. We tried public school for kindergarten but quickly realized that the environment did not work well for him. He requires more time to answer questions and he functions much better in a low-stimulation environment. He also requires frequent breaks to get up and move his body. Body temperature regulation was significantly impacted by the stroke, so he gets overheated easily in the warm weather, and cannot warm up during cold weather. And any stressor, including being too cold or too hot, blood sugar highs or lows, fear, noise and other stimuli can bring on a seizure.
CROLL: How do you think your child is perceived by others?
Erin: Our son looks “normal” at first glance. Most people would have no idea what he deals with every day or the obstacles he has overcome already in his young life. The few times he has been on a team, or in a classroom with other children, the other children made fun of him. We need more adaptive sports, adaptive PE classes, adaptive social opportunities and adaptive academic environments so kids like my son can have experiences similar to those of able-bodied children.
CROLL: What would you like others to understand about your child and others like him?
Erin: Our son is beautiful and perfect just as he is. To parents, I would say to please ask about his leg brace or his hand brace or why he runs differently than other children. I would love parents to talk openly with their kids about these attributes, so other children are not afraid or shy around my son. He may not know how to do a push-up or cut a star out of paper but when kids take the time to explore my son’s gifts and passions, they want to be his friend. I would also like parents in our community to know that my heart hurts from loving him so much and knowing I may lose him at any moment.
Chris Croll is a parenting consultant specializing in educating and raising gifted and twice-exceptional children. She leads the National Center for Gifted Services and the nonprofit Loudoun County Parents of Gifted Students.