How to Cope with Cerebral Palsy for Parents in Long Island

“Your child has cerebral palsy.”  

It’s a gut-wrenching, devastating statement. The kind that makes time slow down and sound distort. The kind that changes your life in an instant, but can’t be fully understand for years, if ever.  

But what does it mean? What is cerebral palsy, and how does it affect your child’s development? What can you do?  

This article attempts to answer these questions in simple language, so that you as a parent can begin to grasp what it means for you, and what it means for your child, and how you will journey through this together. The author is a pediatric nurse with years of experience in caring for children with cerebral palsy. I want you to know that you are not alone, and that this journey is not impossible. Difficult, yes, but not impossible. So, let’s start with some definitions. What is cerebral palsy? How does it affect your child?  

What is Cerebral Palsy?

Cerebral palsy is a neurological (brain) disorder that is caused by a brain injury before, during, or immediately after birth. Cerebral palsy (often abbreviated CP) is an umbrella term for a group of disorders that affect movement, balance, and coordination. What that means, in practical terms, is that every child with a diagnosis of CP will be unique. While there are some common characteristics, no two children are the same.  

CP is classified according to how movement is affected. The problem may be primarily spasticity (stiffness), or dyskinesia (uncontrolled movement), or ataxia (poor balance and coordination). Spastic CP is most common, around 80% of all CP.  

There is also wide variation in how badly someone’s movement is affected. In severe cases, they may not be able to move purposefully at all and require total care, while others may have only a slightly awkward gait which does not really interfere with daily life.  

Challenges with bowel and bladder function are common, since the muscles that control these organs are frequently affected. Other functions, such as breathing, talking, eating, and fine motor control, may also be altered. 

How Does CP Affect My Child’s Development?

In some cases, the brain damage that causes CP only affects movement. In severe cases this may result in a “normal” brain trapped inside a non-functioning body. In other cases, intellectual disability accompanies CP. If the brain damage affects speech or limits purposeful movement, communication is usually limited, and may overlap with and increase intellectual delay.  

Cerebral palsy is usually diagnosed in the first years of life, when a child is delayed in reaching movement or motor milestones, such as being able to hold their head independently, roll over, crawl, walk, etc. Every child develops at their own unique rate, and just because a child is developmentally delayed does not automatically indicate that they have CP.  

Exactly how CP will affect your child’s development must be seen with time. Because brains do not heal in the same way that the rest of the body does, healing is slow, uncertain, and often does not occur at all. This means that the brain injury is permanent. However, it is important to note that the damage is a one-time event and does not get worse. That is, the brain injury will not worsen, although you may notice progressive muscle contractures and other motor disturbances.