How to Explain Cerebral Palsy to Others
If you have a child with cerebral palsy, you will invariably get stares and tentative questions from other people when you bring your child out in the public. Children may ask questions about why your child doesn't play the same way they do. Adults may simply be curious about what is going on with your child.
So how do you explain this disorder to other people in ways that help them understand the nature of cerebral palsy? Sometimes it is simple enough to say, "My child has had a brain injury". In cases where the child has cerebral palsy of an unknown cause, this may be all you can conceivably say about your child's condition. On the other hand, even if you don't know what caused the brain injury in your child, there is some information you can give to parents, others and children that can help them know what has happened to your child.
You can say that there was a time when the child was a baby that the brain didn't get enough oxygen. You can say that it takes only a few minutes of a lack of oxygen in the brain to have permanent damage to brain cells. You can say that the lack of oxygen may have occurred when the baby was still in the womb, at the time of the baby's birth or due to an injury or stroke after the baby was born. The lack of oxygen primarily affected the movement brain cells in the brain.
You can say that the child has spasticity or other motor impairment because the movement parts of the brain are more sensitive than other parts and when they die, the signals telling the muscles to move do not make it from the brain to the muscles so the muscles become paralysed.
You can say that when muscles get paralysed, they often stiffen up and the joints bend in ways that can make the joints stuck in one position. This is why the child needs to wear braces and may need to sit in a special chair or wheelchair to keep the joints from being so stiff.
You may say that sometimes the damaged nerve cells affect the way the person with cerebral palsy speaks. Speech may be slurred; speech may be garbled; there may be facial grimaces that make normal speech difficult.
Sometimes it helps to tell people that the child has a normal intelligence because many patients with cerebral palsy do have normal intelligence but have a limited ability to demonstrate that intelligence to others due to speech abnormalities and other disabilities. This can help others to know to speak to the child with cerebral palsy in ways they would speak to others of the same age because the child will likely comprehend everything.
If you know the cause of the cerebral palsy in your child, you might want to share that with others. You can tell them the child was premature and this caused the brain damage at the time of birth or after birth. You may also share with others that you had some kind of infection early in pregnancy that affected the blood flow to the placenta. This caused the brain cells to become damaged and killed, leading to cerebral palsy that didn't show up right away.
If, sadly, your child's cerebral palsy was the result of a birth injury, you can talk about the event that happened. Perhaps the umbilical cord had a knot in it, the placenta was getting old and didn't give enough blood to the baby, or there was a simple case of umbilical cord compression or breech birth at the time of the delivery. The baby may have gotten stuck in the birth canal and the doctor may have needed to do an emergency caesarean section or a forceps delivery. While it wasn't likely the caesarean section or the forceps delivery itself that caused the cerebral palsy, the fact of the foetal distress at the time of birth indicated that the baby was not tolerant of the conditions in the birth canal and the brain was starved of oxygen.
Your child may have suffered a post-birth injury, such as a motor vehicle accident or severe fall that caused bleeding within the brain or swelling on the brain. It's even conceivable that a parent or other caregiver shook the baby too much in a fit of anger and caused swelling and damage to brain cells. This is called "shaken baby syndrome" and is a very tragic thing for you to have to talk about, especially given the effect this behavior had on the infant and growing child.
In many cases, it really helps parents to talk about cerebral palsy so that their friends and family members know what the injury is all about and can engage in a dialogue about the disease with you. When you talk about the disorder, you de-mystify it so that others can see that, despite the brain injury that has happened to your child, your child is much like other children and may have the same or better intelligence when compared to other children.
Kids don't understand the depth of the disease as much as adults but they should know what the brain is and what it means when the brain has an injury to it. They can know that brain injuries mean that there are other parts of the body affected by the brain, including the muscles of the child, the joints, speech and swallowing. Kids may need to be told that, while the child with cerebral palsy sounds like they suffer from some kinds of mental retardation that they are smart on the inside even though they can't always show it in the way that other kids can.
If people don't ask questions, it's perfectly okay to begin a dialogue with the curious parents and children. They may be too shy or uncomfortable to start that kind of dialogue themselves.
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The author of the substantive medical writing on this website is Dr. Christine Traxler MD whose biography can be read here