Parenting a child with Cerebral Palsy is a journey in which nobody can fully be prepared. From the moment of birth to their adulthood, there are obstacles one must face that make everyday life more complicated.
Accepting and embracing life with CP requires adaptation, resilience, and strength. This parenting journey is different than most, and every stage of life will bring unexpected experiences.
Everyone experiences parenting differently. What might be true for one family may not be right for yours. Take only what you need.
Parenting from the lens of a parent with a moderately impacted child with Cerebral Palsy:
Cerebral Palsy is commonly associated with premature birth. As a parent, you leave the NICU completely unprepared for the journey ahead. With little to no information or help, parents can enter a place of trauma, fear, uncertainty, and anxiety. Premature babies are considered medically fragile. They are often protected within the four walls of their home for extended periods of time to limit germ exposure and other outside risks.
As well, many parents choose to hide their child’s diagnosis when they are very young. Up until age two, CP is not necessarily recognizable to the outside world. Concealing the struggles these families face is easier, as each child grows and learns at their own pace. These battles eventually must come into the light, though, as achieving normal milestones such as sitting up, speaking, and walking may be delayed and questioned by the outside world.
Early childhood is a critical time of development. The first major transition a child with CP faces is the shift into elementary school. During this time of their lives, it is crucial to undergo as much therapy as possible. Services and funding from the state and county are offered to help make moving into formal education easier.
As the child grows and reaches the tail-end of their elementary school years, more challenges arise. With added homework, letter grading and school pressures, conflicting priorities get in the way. This crucial time for CP children can be difficult physically and emotionally, as their need for therapy is just as important as their need to excel in school.
It is important to focus on ways to continue to expand life skills and the child’s independence as much as possible, in order to ensure that the child is better equipped for the years ahead. Life isn’t as simple as it once was. Hours of daily therapy isn’t possible anymore, and a brighter future may seem harder to achieve.
The pre-teen and teenage years are a time of major change. In many cases, services from the county and state are pulled back by the time the child enters their pre-teen years. This means that the child’s progress relies heavily on the parents finding effective and affordable therapies. For both CP and able-bodied children alike, there are new experiences, new pressures, and new challenges to face. During this time, children may begin to spend less time with their parents.
Leaving elementary school and being thrust into a larger campus poses many difficulties. Pre-teens and teens have multiple teachers, limited time to walk from class to class, and social pressures building as each year passes. CP children who are limited in mobility find it extremely hard to navigate through campus and will likely end up needing to switch out their reverse walker for a power wheelchair.
In their teen years, hormones are changing, and emotional health becomes extremely important. Society is unaware of the extra steps CP kids have to take just to get through a normal day. As they try to find their own way in the world, CP children are often confused, frustrated, and longing for acceptance.
Adulthood requires leaving the security of school and moving into another key transition for people with Cerebral Palsy. This transition is hard and brings another set of new challenges.
To the degree the child is physically and mentally capable, parents need to go the extra mile for their child with CP by helping them find employment and encourage their independence. Self-sufficiency and confidence is something they must build. Leaving the family home for the first time, if possible, is one of the biggest steps they can take as an adult.
It can be discouraging to know that only 19% of people with disabilities are employed in the United States, compared to 66% of people without disabilities. However, with determination and persistence, any adult with Cerebral Palsy can and deserve to be employed. This is why knowing your child’s rights is so important. Title I of the American Disabilities Act ensures that businesses with 15 or more employees cannot discriminate against people with disabilities. That means that in most cases, you must have the same opportunities as paid employment that people without disabilities do. Employers must also make reasonable concessions to accommodate your physical or mental limitations.
While this unplanned journey is stressful, it can also be very fulfilling and full of unexpected blessings. As your CP child grows, become an advocate for them. Teach them advocacy skills, from an early age, that will support their lifestyle and build strength within themselves.
There is no way to be fully prepared as a parent, but help and support is available. Your child’s diagnosis is merely that: an analysis of their unique lifestyle. As an organization supporting every single family member, feel free to reach out to us. Our community is here and willing to support you in any way possible.
Special Note: It is clearly recognized that each child with CP presents differently. Those with more mild forms of CP may be able to navigate society with few challenges. On the other hand, those with more severe presentations may follow a completely different, more cumbersome and stressful path. Wherever your personal circumstances fall on the spectrum, we are here to help!
Lastly, we encourage you to not lose hope and to always dare to dream for a brighter future.