A cerebral palsy (CP) diagnosis feels overwhelming. You may feel many different emotions including uncertainty of where to begin in supporting your child and their development. This is normal. Please know that you are not alone. We have a wonderful and supportive community here for you. We also offer a free downloadable resource called the Cerebral Palsy Tool Kit. It was created by parents and clinicians working together to help new parents and family members understand and cope with receiving the cerebral palsy diagnosis.
Cerebral palsy differs from person to person, so saying someone has CP does not help with understanding the individual’s symptoms and their daily needs. Our cerebral palsy diagnosis resource will you help you provide both an overview of cerebral palsy and specific information designed to empower you to ask questions and feel more comfortable as a member of your child’s care team. Although the term cerebral palsy may feel daunting, it often helps to think about it as a framework for getting your child and family the help and support you need.
Emotionally Responding to Receiving the Diagnosis
As a parent, caregiver, or loved one of someone with cerebral palsy there may be many intense emotions. Whatever your personal reaction to hearing about a child’s diagnosis, give yourself, and each member of your family, the time to process what it means to them. Each person’s feelings may be different and that’s okay.
You cannot begin to come to a place of acceptance of your child’s diagnosis by burying your feelings or skipping over the process of facing and accepting what you are feeling about it. Whatever your personal situation, grieving is a necessary, and healthy, part of coping with this journey. Each of us grieves in our own way and at different places along the path.
Coping with Cerebral Palsy & Creating balance
Ultimately, you have to decide and follow your gut about what is appropriate for your child, you and your family. Creating balance can be a constant process for each person and for the entire family. As with any developing child, some issues may pass only to be replaced by new ones, which require new adjustments and resources. With this in mind, it is important to remember the other parts of your life that matter to you. Communicate with friends and family members, laugh, do fun things together, celebrate traditions, and be sure to spend quality time with your child that doesn’t focus on his or her CP.
Maintaining a Positive Viewpoint
At times coping with a cerebral palsy diagnosis can bring you to a place of sadness, especially when you are faced with so many things out of your control, and the unknown of it all. Allow yourself, loved ones, and your child, to process through these emotions as they come, but also, find the areas that can be controlled, and bring those into the focus.
For example, your child (as they get older) may focus on school, achievements in activities, such as video games, or personal goals, like throwing a ball with a friend. As the parent/caregiver, being an advocate/case manager for your child may become your area of focus. You may have case managers as part of an early intervention program, but you are the ultimate case manager and advocate for your child.
You will find guides (doctors, therapists, other parents) along the way to help you navigate through this. What works for one child with CP may not work at all for another child. Whether you find therapists and doctors are able to meet your child’s needs and do it well, or you disagree with how an early interventionist is approaching your child’s care, it is ultimately your voice that matters. If you are unhappy with something you have the right to change it.
If you are just beginning this journey this may seem like a daunting responsibility.
Give yourself time to find your voice, educate yourself, and observe your child. Your insight is often the most powerful tool you have to help your child. A good doctor or therapist will want to know what changes you are, or are not, seeing. They will view your input as an important tool to help them approach your child’s care.
Letting go of expectations about how quickly, and how significant, changes will occur can also help the process of coping with a cerebral palsy diagnosis, for you and your child. This does not mean you do not take action on behalf of your child. It just changes your approach to your child’s development from the place of wanting to lead your child to their greatest possible potential, rather than solely based upon your personal expectations for them. This can be a different way of thinking for some people. It can be hard to not push your child all the time. Allowing them to lead you in their own discovery of self development can seem scary and not productive.
Reaching out for Support
Please make sure you feel you have the support you need to manage this often-challenging time. You may find that you require counseling individually, as a couple, or as a family. For some of you this may be your first time feeling that you need some assistance working through your feelings or problems. There is no shame in seeking help. As the parent you have to ensure you maintain your emotional, physical, mental, and spiritual health. The better care you take of yourself, the more energy and strength you will have for your child.
Siblings of the Person with Cerebral Palsy
It can be easy to get busy with meeting the needs of the child with CP, but it is important to meet the needs of other siblings as well. There may not seem like there is enough time in the day, between therapies, and other appointments, but singling out just a few minutes a day, to do something your other children choose to do, is important. This is important not only for them, but for you as well.
It is easy to get swept up into the ‘parent guilt trap’ but, remember, focus on what you can control. Sitting down with your other children and reading a book before bed, playing a quick game, or listening to them tell you about their day, with your attention only on them, gives them dedicated time with you–even for a few minutes. It is important to have open conversations during these times about the sibling’s feelings and emotions as well.
Sibling support groups, a close friend or family member, maybe even a therapist, may be options to help them process their feelings.
Here is a blog post from Have wheelchair will travel about remembering to focus attention on the siblings of special needs children.
The Supportive Words of Parents for Coping with a Cerebral Palsy Diagnosis
- Here is a video full of love and support from other parents of children, and young adults, with disabilities. They were asked to share what they might have told themselves on the day their child was diagnosed.
For more information, download our free cerebral palsy tool kit.