A listening ear for the highs and the lows
Here is some general advice from other parents of children with cerebral palsy, plus links to some popular online forums, where all sorts of topics are discussed into the small hours by mums and dads and people with CP around the country. There are a great many support groups and organisations out there, take a look and discover what’s nearby in your local area.
Advice from other parents
If only children wouldn’t go through so many different developmental stages they’d be easy. As parents, we all want to understand our child’s needs, support their wellbeing and feel like we’re contributing to them being the very best they can be in life. Along the way, it’s good to tap into any available pearls of wisdom from other parents who’ve been there.
- Seek out guidance. Seek out other parents and ask them about their experiences, either online or through local support groups. It can be very helpful to give you perspective, ideas and a more positive view of the future.
- 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, stop the conversation and ask the person talking to explain further. If you have questions, ask them, this is your child’s future and it’s important you understand the situation and can be a strong advocate for your child.
- Focus on the positives. Every child is born with a unique set of talents and abilities capable of changing the world for the better. You may not know what they are yet, but they are there.
- Go looking. There are amazing people out there who can help your child find strategies for most of the challenges life can throw at them! You might have to find them yourself. The health professionals around you may all be assuming someone else is giving you the information you need.
- It is OK to want more for your child. Many parents comment that they found out about funding, services and new therapies by accident. Do your research; get your name on the list. When it comes to different types of therapy, don’t assume you can’t afford it, talk to the organisations and find out what funding options are available. You may be surprised.
- Find your coping strategies. You can’t be strong for your child if you’re tired and emotionally wrung-out. Don’t feel guilty about seeking counselling 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.
CP Support (Scotland) is a Facebook support group for parents and carers of children with cerebral palsy living in Scotland.
Cerebral Palsy Scotland (for adults) is agroup for adults with cerebral palsy to talk to other adults with cerebral palsy - if parents wish to join they are welcome.
Simply Emma is a leading travel and disability blog focused on accessible travel and life experiences from a wheelchair user's perspective. The blog was created to encourage others, with or without a disability, to travel more and make new discoveries, whether that's abroad or in your own hometown. Simply Emma combines her personal stories with accessible travel guides, accomodation reviews, live event reviews, travel tips and resources.
CP Teens UK is a supportive & accepting community for young people with Cerebral Palsy. Providing help, hope, inspiration & freindship to children & young people with cerebral palsy / physical disabilites, and thier families.
Drawn on Mumsnetters’ advice on their Special Needs page, with links to the popular Talk Boards.
Blogs by Parents
Aberdeen & District Cerebral Palsy Association is a small local charity whose prime function is to assist individuals of all ages and thier families affected by cerebral palsy "CP".
CanChild have resources available with tips for parents of children and youths with cerebral palsy, from parents.
Contact a Family provide for families with disabled children. The website contains links to a large number of local support groups.
They have a new transitions website Talking About Tomorrow which has been developed with parents, for parents, it is a guide through the journey to adulthood for disabled young people in Scotland.
ENABLE Scotland has a booklet called Tricky Moments which has practical tips for managing challenging behaviour from children who have a learning disability. Tricky Moments covers a range of topics, including aggressive behaviour, eating challenges, sleeping difficulties and many more.
Home-Start is one of the leading family support charities in the UK. Families struggling with physical health problems, as well as many other issues, receive the support of a volunteer who will spend around two hours a week in a family’s home supporting them in the ways they need.
This website is a support network of UK counsellors and psychotherapists, with information on their training and experience, areas of counselling covered, fees and contact details. This service is free, confidential and easy to use.
Charity founded in 2014 with the following aim: "To help physically disabled young people to reach thier potential and to improve thier mental well-being and that of thier families".
They support disabled people between 12 and 25 through weekly one-to-one counselling sessions with qualified professionals.
Special Kids in the UK is a charity for families who have a child of any age with special needs. Families who have children and young people with special needs often deal with similar challenges, and Special Kids in the UK aim to bring families together for friendship, to share information and to support one another.
Scotland’s free helpline, email and web-chat service, for anyone caring for a child – open until 9pm Monday to Friday.
Tel: 08000 28 22 23
Independent Advocacy for Children & Young People.
Independent Advocacy is a free service which helps children and young people have thier voice heard and thier views taken into account when adults and professionals are making decisions about thier lives.