"If I knew then what I know now" ... Parents' Reflections on Raising Children with Cerebral Palsy
© Dec 2009 Brouwer, E, Clutton, S, Imrie, H, Reid, A, Evans, J, Russell, D, Bartlett, D
Some of the parents who participated in the Adolescent Study of Quality of Life, Mobility and Exercise (ASQME Study) told us "If I knew then what I know now, I would have done things differently". We were interested in exploring this theme further and so we conducted qualitative interviews with 9 parents participating in this study in order to learn from them about their experiences parenting a child with cerebral palsy from early childhood into young adulthood. From the information we gathered in these interviews we developed a tip sheet that might be helpful for other parents caring for children and youth with cerebral palsy.
Tips FOR parents of children and youth with cerebral palsy, FROM parents
What is cerebral palsy (CP)?
CP is defined as a permanent movement and posture disorder caused by a disturbance in the fetal or developing brain. The underlying brain disturbances do not progress over time, but usually lead to limitations in activity for the child.
What did we do in this project?
Raising a child with CP is not always an easy task. Research exploring experiences of parents raising children with CP has uncovered advice and tips for new parents of children with CP to help them on their way through this experience. The aim of this tip sheet is to outline this advice so it can be used to help you in your journey of raising a child with CP.
What did we find?
Here is the major advice from the parents participating in this project:
Getting the resources you need can be a struggle, whether it is at home, at school, or in the community. One way to help this process is to be a strong advocate for you and your child. The following are ways in which you can be a successful advocate:
- Be assertive but polite; stay calm
- Try not to get discouraged
- Persevere! Your child is worth it
- Encourage your child to advocate for him - or herself - give them independence and the chance to take charge of their own lives
- Allow your child to make mistakes and to learn from them.
Educating yourself in any way you can about your child’s condition can help you prepare for the future and ask the right questions when time comes. It is also important for anybody working with your child such as teachers and other community members, to be educated on your child’s condition so that they understand your child’ unique abilities and challenges. This can be done yourself and/or in partnership with your health care professionals.
Developing a strong support system can be helpful for both you and your child. Don’t try to do it all yourself! Who to involve in this support system is up to you, but the following can help the process:
- Involve your family early on (including grandparents)
- Seek out other parents of children with CP for guidance and support
- Be a support for oth of children with CP
- Build up a support network of, and neighbours.
Taking care of yourself
Although your child is important, you also need to be in the right mindset and stay healthy yourself, because that is good for the children! Here are some suggestions to ease your parenting demands:
- Make time for your partner and relationship – work together to raise your child
- Incorporate time to nurture your own needs
- Be honest about your feelings – guilt, anger, fear, anxiety – accept them (they are normal!)
- Keep a positive attitude – one day at a time
- If you start to feel worn out, seek support from family, friends and/or professionals.
Resources, no matter the type, are not always visible. Although they may be difficult to find, they have been shown to be a tremendous asset to families. The following are ways in which you can ensure you are making the best out of what is available to you:
- Actively search out and use all the community and financial supports available to you
- Ask other parents what supports and services they are using and tell other parents what supports and services you have discovered
- Consider involving your child in both inclusive and specialized (special needs oriented) community and school programmes to support both skill and social development.
Working with others
Working with health care providers, educators, and others in the community can be overwhelming. A lot of new information is coming at you at once and it can be difficult to sort through it all. To get the most out of these relationships, it is important to be comfortable and prepared:
- Ask questions and tell professionals what you and your child need and want – you know your child better than anyone
- Consider having an independent advocate join you at meetings; a second set of ears is helpful to make sure that you understand what is being said
- If you don’t understanding something, ask for it to be explained
- Observe your child’s development closely in areas additional to his or her physical functioning (e.g. learning, reading, socializing). If you have concerns, ask for professional assessments
- Check that your child’s equipment is comfortable for them to use in every setting
- Don’t be afraid to seek out diagnoses for your child – they make it easier to access services and programmes
- Ensure that the health care professionals, educators and others are able to establish a rapport with you and your child
- Keep paperwork on file and make photocopies as necessary – it is common to need to fill out the same form several times – CanChild offers a “Keeping it Together” (KIT) organizational package for paperwork.
Lastly, parents suggested to “follow your gut”, take it one day at a time, and appreciate the uniqueness of your child. One parent suggested keeping a journal so that you can see the progress being made.