It’s 16 years ago now, but I can remember it like it was yesterday. My daughter Eve was 20 months old when I was told she had Cerebral Palsy.
No leaflet was put into my hand to explain what Cerebral Palsy was. There was no phone number to call for support.
I was told to come back in 6 months. 6 months! Can you imagine how I felt?
We had to find our own way
I was frightened. I didn’t know what the future held for Eve. I felt alone in a world I didn’t understand. I had questions and I wanted answers, but no one was listening. It was a case of ‘Go home and get on with it’.
But of course we couldn’t do that. We went from one doctor to another. Their focus was on what Eve couldn’t do and I felt like I was drowning in their negativity.
I desperately needed advice from someone who’d been in the same situation – from someone who understood. But I didn’t get it.
No family should struggle alone
I don’t want anyone to go through what we did during those early years with Eve. Thankfully, neither does Scope.
Scope’s service Navigate provides exactly the kind of support I wanted – and needed. Through Navigate, parents with a recently diagnosed disabled child can receive support from people who have a lived experience of disability.
During the last 16 years, I’ve gone from someone who felt completely lost, to someone who has had to find a way forward. It was a struggle, especially at the start, but I’ve learned from every experience.
Now I’m a Parent Adviser, I can be there for other parents
And today I can use all the knowledge I gained to help other families because I now work as a Parent Adviser for Navigate.
I talk to people who are where I was 16 years ago. They’ve just learned their child is disabled. They might feel scared or alone like I did but the difference is they have someone to talk to. Someone who understands.
Nearly 9 out of 10 parents admit that they find it hard to talk about how they are feeling and ‘bottle up’ difficult emotions. It’s not good for them or their children. No wonder depression, anxiety and other mental health problems are affecting so many families.
Through Navigate, parents are connected with a mentor like me. We can help with everything from practical advice to emotional support because we’ve been there.
It took me years to find the support I needed. My job now is to save parents that painful struggle.
It’s only thanks to you that Scope can run services like Navigate and be there for the families that need support and guidance.