Sara, a Navigate Parent Adviser, talks about the huge support she received from her parents whilst learning to accept herself as a disabled person.
I'm Sara, I'm 45 years old, and I'm a Parent Adviser for Scope's Navigate service. I was diagnosed with right-sided hemiplegic cerebral palsy (CP) when I was one, and with epilepsy at 18 months.
One of the biggest barriers I've faced is the general lack of understanding towards disability. This is an issue I've encountered a lot throughout my life.
My school life was tough. Children were sometime unkind, calling me names like 'spastic' and 'crip'. Other children didn’t want me in their group of friends, so I was left out of a lot of social occasions. I felt isolated and lonely. During this time, I often wondered if I would ever get married or meet anyone. After all, who would want to be with me?
My parents made sure we did loads as a family
Whilst having to go everywhere with either my Mum or Dad sometimes felt frustrating, it did strengthen our bond together.
Dad and I have the same sense of humour, so we'd watch comedies together. Mum and I regularly went shopping, as we still do today. Though my epilepsy meant I had limited choices for social activities, my parents still made sure we did loads as a family.
I don't think I'd be where I am now without the way my parents brought me up. The physical and emotional tools that my parents gave me helped me to accept my disability as I grew up. They showed me that other people’s judgement was their issue and not mine. They taught me resilience.
Through bullying in school and stares from strangers, they were always there to give me a hug, reassuring me that things would be ok.
Their dedication to giving me a greater sense of independence was obvious and admirable. Little things, like having pull-down door handles at home and their choice to buy me Velcro trainers, gave me a chance to do physical tasks with less difficulty. That spirit of finding different strategies to make life easier is something that's still with me in adulthood.
Though my methods might look strange to some people, they allow me to be as independent as possible!
There's light at the end of the tunnel
Over time, I built up the social skills I missed out on early in life. That enabled me to take on the career I'm in today.
I also have a family of my own, which is something I'd previously doubted was possible. At 18, I met a brilliant young man called Gareth who accepted me completely. We've been married for 28 years and have an adopted 18-year-son. My disability made me who I am today.
In my work, I help parents of disabled children to see that there's light at the end of the tunnel. My parents gave me all I needed to succeed as a disabled person starting out in life. I learnt my advocacy skills by watching the way they looked out for me. That's what drove me to become a qualified counsellor. Now as a Parent Adviser, I hope to empower other parents to give the same to their children.
To parents of children with CP, I would advise you to focus on what your child can manage; try not to worry if they can’t do some things. Everyone is unique, and no two levels of ability are the same. As a young person, I assumed I had to be able to do what my peers were doing, such as learning to drive. Now I know that we're all on a different path.
It might take us a bit longer to reach our goal, but that's okay!