We have put together some general advice from parents of children with cerebral palsy.
Visit the Online Support page to connect directly with other people with CP or parents. CanChild also have a resource on tips from parents’ reflections on raising children with cerebral palsy.
Seek out guidance. Seek out other parents and ask them about their experiences, either online or through local support groups.
Don’t be afraid to ask questions. You will meet many different health professionals along the way. If you don’t understand a medical term, or don’t fully understood what’s being said to you at an appointment, don’t be afraid to stop the conversation and ask the person talking to explain further.
See the ability. Irrespective of the severity of their condition, every child is a unique individual with their own set of abilities.
Go looking. Many parents comment that they found out about funding, services or support by accident. Try using online and local support networks to seek those things out. If you find something out there that you think could be of benefit to your child, raise it with their health professionals and start a discussion. If it’s something that isn’t funded by statutory services, don’t assume you can’t afford it. Talk to the organisation and find out what funding options are available. You may be surprised.
Find your coping strategies. As a parent of a disabled child, you will sometimes feel overwhelmed and find yourself wrestling with a lot of emotion. If you’re feeling tired, anxious, stressed or emotionally wrung-out, don’t feel guilty about asking for help, seeking counselling, getting respite care, or finding time for yourself. Do what you need to do to look after your own wellbeing.
Build your network of support. A strong support system can help you and your child and allow your knowledge to be a support to others in the community.