Finding out your child might have cerebral palsy
You may have an official diagnosis, or cerebral palsy may only be a suspicion at this stage. In either case, you are doing the right thing by finding out as much as you can about the condition. It’s bound to be an anxious and emotional time; finding out your child may have a lifelong health condition is bound to feel overwhelming and hard to process.
What’s important to know is that every child is different. Your child may have to try a little harder than everyone else in certain ways to get where they want to be, but with you beside them helping, loving and willing them on they will delight and surprise you daily. Every child has the potential to achieve great things, as you can see from these inspiring real life stories.
There are many sources of help, emotional support and reassurance both close to home and online. Your child’s future has yet to unfold, and until they are fully developed no one truly knows what the future will bring. Rest assured you will find the best ways to support your child and do a great job.
Here is some advice gathered from parents further along the journey.
- Seek out guidance. One parent described the first 18 months as feeling like being ‘in a bubble’, it can feel very isolating and there is a lot of information to take in. 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 both perspective, 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.
- You will look back on this time. Most parents agree that the early years are the hardest. You are at the beginning of a steep learning curve, but that curve will give you the skills and confidence to do the very best for your child.
- 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.
As Emily Perl Kingsley once described in her famous poem ‘Welcome to Holland’ it might not be the journey you expected, but the adventure will be every bit as amazing.
“I think it’s good to talk to someone who will tell you it’s not always as bleak as they paint. My little boy walks, talks, runs about and what he has, and what everyone expected, are so far apart.” Read Dylan's story.