Coping with a Recent Cerebral Palsy Diagnosis
By Lee Vander Loop
CP Family Network Editor
Questions, Concerns, and Your Child’s Future
For parents and families experiencing their child’s recent cerebral palsy diagnosis, the world may feel frightening and uncertain. Whether your child is a newborn or even a few years old, learning they have a birth injury can be like a kick to the stomach. Regardless of the timing, the news can turn your world upside down. It’s not uncommon for the entire family to experience a period of shock, grief, and anger as they come to terms with their child’s diagnosis.
My family’s experience with our daughter was very similar.
The test results came back and the physician led us to his office, closing the door softly behind us. His somber demeanor made us anxious as we sat, awaiting the results. Things began to blur as he used phrases like “brain damage” and “cerebral palsy.” We asked him to repeat his diagnosis, but our minds refused to accept what he was saying. He explained that cerebral palsy is caused by a brain injury and can affect muscle tone, intellectual ability, both gross and fine motor skills, and other functions, but we stopped hearing anything after he repeated the words “brain damage.” Shock took over.
As you struggle to accept the news, your mind reels with countless questions and concerns. How did this happen? When was my baby hurt? Why my child? Sadly, many families never find the answers they’re looking for and, sadder still, many simply accept the hospital’s claim that “it was a fluke” or “these things just happen sometimes.”
True, in many cases of congenital cerebral palsy the cause is unknown. In some cases, however, it’s possible to pinpoint errors by medical professionals as the reason a child develops cerebral palsy. Very often parents are unaware their child’s diagnosis was preventable.
Don’t Assume the Worst
Moving forward after a diagnosis of CP can be difficult and daunting. But no one, and I mean no one, is going to be a better advocate for your child than you. Knowledge will be your best tool in making the best life possible for your child. And the more you know, the more informed your questions will be when building that life. You should be asking questions such as:
- Were thorough diagnostic tests performed?
- How severe is the brain injury?
- Where are the medical records for your child AND you?
- How will this diagnosis affect your child’s future?
- Will your child experience learning disabilities?
- What kind of developmental delays should you look for?
- Will your child require expensive, life-long care?
- Did the doctor or hospital staff provide the best possible care for your child?
Be fearless! Ask these and any of the dozens or hundreds of questions the pursuit of your child’s best future will bring up.
You’re Not Alone
Always remember that you’re not going through this all by yourself. It’s ok to ask for help! It’s normal to feel anger, fear, or anxiety when faced with a life-changing event, and learning that you are a parent to a child with special needs is definitely a life-changing event. Reach out to friends, family, or clergy for help and support in navigating the emotional and psychological trauma you may be feeling. You may even want to engage in some “talk therapy” with a professional psychologist.
And then there’s us. The Cerebral Palsy Family Network is a great place to start if you’re searching for other families living your experience. Our CPFN families have been where you are and have firsthand knowledge of the challenges you’re facing. Our website features thousands of helpful stories, articles, and resources. Our online community of over 100 thousand members can help you connect with other families to gain insights into how to give your child the best care possible, share your concerns, and celebrate your victories.
Whether your child’s CP was the result of a medical error or some other cause, CPFN offers a wealth of information and encouragement.
Additionally, research your local special needs organizations and resources. Many have parenting support and education programs and offer an opportunity to connect with other special needs parents in your local community.
Start Treating Your Child as Soon as Possible
Early intervention can be key to minimizing cerebral palsy symptoms and improving your child’s quality of life. There are many options available depending upon the severity of your child’s CP. Physical therapy, speech therapy, adaptive equipment, medication, even hippotherapy is being used to help kids with CP. These and many other options have the potential to help your child learn and grow as much as possible.
Your pediatrician can refer you to county and state support agencies that offer early intervention services. Research the variety of therapies and interventions available. The more you know before meeting with your child’s doctor, the better prepared you’ll be to determine what treatment is best for your child.
Facts vs. Myths
Learning Disabilities—Many parents new to the world of cerebral palsy assume that their child will experience learning disabilities. This is not necessarily the case. While CP is often accompanied by learning difficulties, not every individual suffers from cognitive issues that impair their ability to learn. There are many people with CP who experience no intellectual disabilities and have average to above average intelligence, attending the same schools as others in their age group.
Mobility—Some families fear their child will be wheelchair-dependent their entire life. In reality, not all children with CP have mobility challenges severe enough to require a wheelchair. Over half (about 50%-60%) of children with CP can walk independently.
Independence—Many assume that a child with special needs will require lifelong care, never achieving independence or a satisfying quality of life. While some will require support into adulthood, a great number of individuals with cerebral palsy grow up to live productive, independent lives, accomplishing career and life goals similar to their peers.
You’ve Got This!
Learning you’re now a parent of a child with special needs may feel frightening and intimidating, but you will adapt and overcome. You will rise above the moments of stress. You will learn the language of medicine and bond with the doctors and therapists who will become like family as they, along with you, endeavor to help your child achieve the best life possible. Your child will constantly amaze you with their courage, resilience, and ability to persevere and adapt. It’s a whole new world, but you will make it yours.