Cerebral palsy, or CP, is a developmental disability that affects movement and muscle tone of posture. It is caused by damage to the brain that typically occurs in utero, during labour and delivery, or in early infancy. In some cases, oxygen deprivation (birth asphyxia) before, during, or after birth causes a birth injury such as cerebral palsy.
The signs and symptoms of CP can vary significantly from person to person. Parents and caregivers who are raising a child with cerebral palsy often find it to be demanding, between seemingly endless medical and therapy appointments and the day-to-day demands of caring for a child with disabilities. In addition to financial support for cerebral palsy, there are a number of resources in Canada and online that can provide emotional and practical support.
At BILA, our team of cerebral palsy attorneys understands how challenging it can be to raise a child who has sustained a birth injury. We are committed to providing support to children and families who have been impacted by birth injuries like cerebral palsy. Below, we have compiled a list of resources that may be helpful as you navigate the journey of raising a child with CP.
Every child with cerebral palsy experiences the disorder differently. Their families also have different experiences, based on the significance of their child’s symptoms and how their day-to-day lives are affected by it. Generally, many parents and caregivers take on a high level of responsibility for advocating for their kids throughout their lives and for many daily tasks.
When your child is first diagnosed with CP, it can be overwhelming and scary. Talking with others in a similar situation can be incredibly beneficial. Even if your kids have different symptoms or are affected in a different way, it is helpful to connect with people who truly “get it” in a way that parents of children without disabilities often do not.
In Canada, the Cerebral Palsy Association has chapters in most provinces. Many of these chapters offer support groups for people living with cerebral palsy and their families. You can find a support group through the following associations:
- The Cerebral Palsy Association of British Columbia: This organization offers support to individuals and families going through the various stages of diagnosis, acceptance, and living with CP. They also offer telephone support, advocacy training, and other forms of support.
- Cerebral Palsy Association in Alberta: Here, you can find one-on-one support, counseling, and assistance over the phone for issues related to CP. This organization will also assist parents and caregivers with forming local support groups.
- Saskatchewan Cerebral Palsy Association: In Saskatchewan, the Cerebral Palsy Association offers a variety of ways for individuals and families to get support as they navigate life with CP.
- Cerebral Palsy Association of Manitoba: This is a great resource for all aspects of living with and raising a child with CP in Manitoba.
- Ontario Federation for Cerebral Palsy: In Ontario, you can get support as a family member of a child with cerebral palsy. This may include emotional support as well as practice assistance with things like paying for adaptive equipment or finding respite care.
- Association de paralysie cérébrale du Québec / Quebec Cerebral Palsy Association: In Quebec, you can access various supports through the Quebec Cerebral Palsy Association.
- Halifax Regional Cerebral Palsy Association: While this association in Halifax does not have a website, you can reach out to them directly at (902)864-9699 to learn more about support groups.
- Cerebral Palsy Foundation of Newfoundland and Labrador: Here, you can find a variety of educational resources as well as monthly parent support meetings.
- Prince Edward Island Cerebral Palsy Association: At this organization, you can connect with others in your community who are caring for a child with cerebral palsy.
Beyond the Cerebral Palsy Association, other nonprofit groups in Canada are dedicated to supporting both individuals and families who are living with CP. For example, the Cerebral Palsy Canada Network offers a range of resources for families, including support groups. Reaching out to a social worker or the Cerebral Palsy Association in your province or territory is one of the best ways to get connected with these and other forms of support.
There are a lot of downsides to the internet, but one of its biggest benefits is that it can bring people who share a common interest or experience together. This is particularly important for parents or caregivers who are raising a child with CP.
It can often feel difficult or even impossible to find the time – or a sitter – so that you can attend in-person support groups. Online communities can bridge that gap, allowing you to connect with others and find support from anywhere, whether it’s in an occupational therapy waiting room or on your own couch after your child has gone to sleep.
Some online resources include:
- Facebook support groups, including the Cerebral Palsy Support Group. If you search on Facebook, you will likely be able to find an online group for parents or caregivers of people with CP, including specific groups for kids with challenges similar to your own child’s or for people in your region.
- Inspire.com, which is a cerebral palsy support group forum to connect families, friends, and caregivers.
- MyCP Forum is a secure web portal where people affected by CP can share information and resources. Importantly, all identities are protected on this forum, which can empower people to ask and discuss sensitive topics.
- Mommies of Miracles is an online support group for parents of children with disabilities. While it isn’t limited to CP, there are many caregivers on the site who are raising kids with cerebral palsy.
- Twitter, TikTok, Reddit, and other social media platforms can also be incredibly helpful. For example, finding fellow parents and caregivers for people with CP on TikTok may be a great way to get ideas on how to handle certain situations or otherwise connect with people in similar situations.
You may feel completely out of control when your child is diagnosed with cerebral palsy. Educating yourself about CP is a good way to take back some of that control. These books can help you learn more about the condition, its treatments, and the perspectives of other caregivers and people living with CP.
- Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller, M.D., and Steven J. Bachrach: Doctors from the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children provide information for parents and grandparents caring for a child with CP.
- Children and Youth with Complex Cerebral Palsy: Care and Management by Dr. Laurie Glader and Dr. Rich Stevenson: this book is a practical guide for people caring for children with complex cerebral palsy, primarily GMFCS IV and V. It is useful for both clinicians and families.
- Spastic Diplegia Bilateral Cerebral Palsy by Lily Collison: This book explains how spastic diplegia develops over a child’s life and explores top treatments. It was written by the parent of a child with CP along with experts from Gillette Children’s Specialty Healthcare. The book aims to empower parents to advocate for children with CP.
- Cerebral Palsy: From Diagnosis to Adult Life by Dr. Peter Rosenbaum and Dr. Lewis Rosenbaum: this book gives a comprehensive description and overview of cerebral palsy from birth through adulthood. It also includes information on how to optimize inclusion, support, and participation.
- The Impossible Mile: The Power in Living Life One Step at a Time by Johnny Agar: Johnny Agar was born with cerebral palsy. Doctors said he would never walk. In this memoir, Johnny tells how he overcame the odds to become an Ironman triathlete by drawing strength from his family and faith.
- Pure Grit: this book features memoirs from 19 people across the world who are living and thriving with cerebral palsy.
- Xander’s Cerebral Palsy Superpowers by Lori Leigh Yarborough: Xander is not just a young boy with cerebral CP — he’s an important part of his family with his own talents. This illustrated book can help a cerebral palsy caregiver explain CP to siblings or friends.
When you have a child with cerebral palsy, you may find yourself neglecting your own well-being because all of your time and energy goes towards taking care of your kid. It’s important to remember that self-care (taking care of yourself) is NOT selfish. In fact, it’s often essential to keep providing the level of care that your child needs throughout their lifetime.
There is no right way to engage in self-care; it can mean different things for different people. For example, one form of self-care is setting boundaries with others. Spending time on things like your budget or meal planning is also a form of self-care. Other ideas include:
- Asking for help. You are not a superhero, and you cannot necessarily do it all on your own. Don’t be afraid to ask loved ones, organizations, your child’s medical professionals, or even a local government agency for help.
- Take care of your own health. This can involve everything from eating right to getting sufficient sleep. You also shouldn’t neglect your own doctor’s appointments and therapies.
- Try to do something for yourself each day. Even a short amount of time – like 15 minutes to enjoy a cup of tea before everyone else wakes up – can help you recharge.
- Find a way to blow off steam. This could be anything from going for a run to venting to a friend to going to a support group meeting.
Child Care Support
One of the hardest parts of raising a child with cerebral palsy is that it can be incredibly difficult to ever get a break. Typical babysitters may not be able to handle your child’s more complex needs – and you may be scared to leave your child with people who aren’t as well-versed in their treatment and needs.
Fortunately, respite care is available through many different organizations across Canada. Many of the Cerebral Palsy Association chapters listed above for support groups also have resources for respite care. There are also province-specific resources for respite. For example, in Ontario, Ceridian Cares, Special Services at Home (SSAH), and Enhanced Respite all offer funding for respite care or childcare support for children with disabilities.
The programs available for respite vary across provinces. If your child has CP, the best option will usually be to connect with the local chapter of the Cerebral Palsy Association. Employees, volunteers, and fellow caregivers can often advise you on the best sources for respite care.
BILA Is Here for You
Raising a child with cerebral palsy can be hard. Fortunately, there are more resources for parents of children with disabilities than ever before – particularly online. Taking advantage of these resources can be a critical way to take care of yourself and get the help that you need as you care for your child.
At BILA, we work with parents and families whose children have suffered birth injuries. While a cerebral palsy lawsuit cannot make your child whole again, it can provide you with the resources that you need to take care of them throughout their lives. To learn more or to talk to a birth injury lawyer in your province, reach out to BILA at 1-800-300-2452 or fill out our online contact form for a free initial consultation.