Mike and Louie
My Involvement With PenCRU- Sharing Experiences
I’m Mike and I’m a tutor at a local college. I have four children, 21, 20, 12 and 11yrs. My youngest son was diagnosed with Cerebral Palsy (Spastic Dyplegia) when he was six months old. The Cerebral Palsy affects his mobility, speech and development. Louie is now 11 and has the development of a 2-3year old. He needs constant care and attention.
I remember in the first meeting the doctor had to be very straight forward and factual and they had to say ‘your son has a disability’. The main thing I could take in was a comment made by the doctor: “He’ll never play rugby,” and being a rugby player myself, hearing that was devastating. At the time I couldn’t conceive anything else - it didn’t feel real. I was in shock and then there was a realisation that this was real. I didn’t know anything about Cerebral Palsy, I didn’t know anything about medical conditions, what the limitations might be for our son, what the future held. I didn’t know how this would impact on me, my partner and our little boy Louie.
I became a member of the Family Faculty five years ago after coming across an article about PenCRU and the Family Faculty in a local leaflet. After my experiences with Louie I was looking for opportunities to meet other parents that were in a similar situation and to be able to share our experiences and offer my advice or find out more as this was so new still to me!
I really enjoyed attending the Cerebra Research Event in Cardiff in 2013 with some of the PenCRU team and we delivered two workshops. I presented on the workshop that was about children’s attitudes to disability. Before the event I also attended a meeting to help plan the design of the workshop. You actually felt valued and listened to. I was sharing experiences in a positive way and gaining some positivity from negativity.
During the workshop we discussed the topic of promoting positive attitudes towards disability in children and young people. We included the results from a recent survey carried out across mainstream schools in Devon. The aim of the workshop was to consider how PenCRU would involve families and other key informants in designing a school based intervention, which aims to promote positive attitudes towards disability, for the next phase of the project.
It was great to be able to speak to the fundraisers and strangers 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 the people who might work in charity shops, offices and fundraising etc to ACTUALLY 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. I believe strongly that we should try to support on occasions like this.
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 people in a similar situation to me when they find themselves in the same position and support people along the way. So maybe, just maybe someone can help be there for them and help them come to terms with what's happening and maybe tell them it's alright not to know all the answers - we can try to find them together on the way!
It’s a difficult time being a parent and as they say "there's no instruction manual"!, but when confronted with such devastating news and not knowing where to actually go for a 'Human Voice' (not medical, academic ) just 'plain speak' is so valuable.
Please do contact us if you would also like to share your experience of being involved with PenCRU!