My name is Mike and I’m a tutor at a college in Exeter. I have three children aged 21, 20 and 11 years. One is training to be a teaching assistant and one is working as a care assistant. My youngest son Louie lives with me.
When Louie was a baby we thought everything was fine apart from just a slight delay in his development. When he was 6 months old the doctors broke the devastating news that he has cerebral palsy.
The cerebral palsy (spastic diplegia) has affected his mobility, speech and development. Louie is 11 but has the development of a 2-3year old. He is doubly incontinent and has limited speech and needs constant care and attention. He was also diagnosed with a bicuspic aortic valve (heart problem) so has a heart murmur and reflux and several other issues.
My partner and I had separated when Louie was 6 months old, but we both wanted to do what was best for our child so attended meetings about Louie together. I remember in the first meeting the doctor had to be very straight forward and factual and had to say ‘your son has a disability’. One of the things I always remember the doctor saying was ‘he’ll never play rugby’ and being a rugby player myself, hearing that was devastating.
The first thing is the shock and then the realisation that this is real and you don’t know where to go for help. I didn’t feel like there was anywhere I could go for help – I didn’t know anything about cerebral palsy, about medical conditions, what the limitations might be for our son, what the future held. I didn’t ask questions at first because I was in shock – I had been given this diagnosis that my baby won’t be able to walk, won’t be able to talk. It was difficult to know where to go to for support. What I really struggled with was that there was nothing that I could do about the fact that he had cerebral palsy. I couldn’t change this medical condition that is permanent damage to the brain; the brain can’t repair itself.
Instead of trying to find an answer of how it could be ‘fixed’ or trying to find someone to blame, the next thing you can try to do as a parent is try to educate yourself or try to find out as much as you can from other people in the same situation – not from an academic or medical point of view. How do you deal with this? What do you do about it? I mainly wanted to find out how his cerebral palsy would affect him.
I’ve been involved with the Cerebra Research Unit at Exeter University (PenCRU) for 5 years now. With PenCRU, I feel as if I am doing something, even if it’s only a little bit. I’m doing something to try and make a bit of a difference. If I can help someone else going through the same thing to make their journey a bit easier it will be worth it. It’s about trying to use my experiences in a positive way.
Being part of the Family Faculty at PenCRU I can pass on my opinion and advice to help others make informed decisions in the same situation. It’s a bonus if I can help promote people’s awareness and help educate and inform people – I would like to be able to help those in a similar situation to me when they find themselves in the same position and support people along the way.
I really enjoyed attending a recent Cerebra conferences with PenCRU. It was great to be able to speak to the fundraisers who are trying to make a difference for your child – it was a great opportunity as a parent to share my experience. It’s great for people to see where the money goes and who it helps – you can say I am one of these people who have benefited from this and who can pass on knowledge and information.
The Peninsula Cerebra Research Unit (PenCRU) is based at the University of Exeter and carries out research that aims to improve the health and wellbeing of disabled children and their families. PenCRU is all about forming meaningful partnerships with families, working with them to undertake research.