Michelle and Brendan
Michelle’s son, Brendan, 11, was supported by Headway Devon for two years. Here she tells us how Headway has helped her family and urges anyone who thinks that Headway may be able to help their child to get in touch.
My son Brendan has a rare condition called an agenesis of the corpus callosum. This means that his brain didn’t form properly and the part that should link the two halves of his brain is missing.
Because of his injury, Brendan has learning and behavioural difficulties, which mean that in many areas he performs at around the same level as a child of reception age.
Brendan is constantly on the go and struggles to sleep – he sometimes asks me and his dad to turn his brain off for him so that he can lie down and rest. He also acts impulsively and without thinking – if he wants something, he expects it do be done now and doesn’t understand when things can’t happen that way, which leads to him getting frustrated and angry.
As a result of his difficulties, Brendan has been bullied. He finds it hard to make friends and struggled to settle in at school. Birthdays can be particularly difficult: Brendan is fine when it’s his own birthday, but when it’s someone else’s he doesn’t understand why all of the attention is on them.
He also doesn’t cope well in crowds so going into town can be quite nerve-wracking. I remember taking him to watch the Tour of Britain as it came through Exmouth last year, but he was scared of the crowds and spent the whole time hid behind a barrier.
Although my husband and I knew something was wrong when Brendan was at nursery it wasn’t really picked up until much later, and even then it was never looked at fully by the professionals. In the end I had to go to my local councillor to get his case looked at properly, by which time things had got worse.
When we first got in touch with Headway Devon we weren’t really coping: Headway were great because they came to visit me.
I didn’t consider Brendan’s condition to be a brain injury until I spoke to Headway. Speaking to Headway encouraged us, it made us feel like it wasn’t all down to us. They helped us to understand Brendan’s condition and told us how we could manage his behaviour. I felt relieved, understood and like I wasn’t being judged.
Since coming to Headway Devon Brendan is calmer and he has made a really good friend – he talks to us about the centre and his friends there in a way that he’s never talked to us about school. He looks forward to coming to Headway; he’ll ask us “is it Headway day today?” and is disappointed when it isn’t.
Headway Devon has built him up, and it has helped him to realise that there are other children similar to him. Although every brain injury is different and has different effects, at Headway the children all have their own needs and everyone is treated equally.
As well as giving me and his dad advice about how to cope with Brendan’s behaviour, Headway have also been into Brendan’s school to help his teachers. Although we had spoken to the head teacher before, once Headway got in touch the school realised that what we’d been saying was true and took his needs into account. He now has a really good relationship with the school and his teachers. He’s even started going to a new smaller class with only eight children in, which has made a real difference to his work – it makes it much easier for him to concentrate and he can now focus on one thing for up to 10 minutes.
I’m also really proud of Brendan at the moment for his cycling. Since realising that one-to-one attention works really well with Brendan, he’s been going out on his bike with his dad a lot and they recently completed the Granite Way – a full 18 miles.
If there is anyone reading this who thinks that their child might be living with the effects of brain injury, I’d really encourage you to get in touch with Headway and ask if they can help. You don’t need to go through a professional – you can just explain to them what you’re seeing and they will listen to your concerns.
My husband and I were worried about talking to Headway – we hadn’t always had great experiences with professionals and were expecting more of the same, but they were so different. They’re always friendly and helpful, and they really listen to what I say to them. I like to call them “the sensible professionals.”
It’s been really reassuring for me to know that Headway Devon is on our side: fighting our cause in the blue corner, even when it feels like everyone else is in the red corner.