Monday, 31 October 2011

The boy needs therapy!

It's really hard to search for answers, when you're not really sure of the question. Regular readers of this blog, will probably know that I've devoted a lot of time researching various therapies and treatments for Max. Partly, because I want to understand how his brain injury might affect him and partly because I feel that there's so much more we could be doing. The brains ability to 're-wire' itself (ie neural plasticity) is at it's greatest in the first few years of life. So, it makes sense that now is a really important time to be working hard with him. What complicates this though is that (a) He is still only a baby so problems with learning, behavior and cognition aren't yet apparent; (b) All of the 'experts' have a "we'll have to just wait and see" kind of attitude; and (c) All of the different specialities working with us don't really communicate that well with each other. For example.....For the first month or so after the stroke, Max could only look left. The physio and OT gave us loads of exercises to help him regain his visual tracking. Towards the end of his hospitalization, the Neurologist informed us that Max was looking left because of the lesions on his brain and that this was common after brain injuries. Well gee, thanks for telling us that now....

I'm feeling pretty happy right now about the supports we've got in place to assist in his physical development but I've been wondering what we can do to help him cognitively. My research has taught me that it's pretty common for kids like Max to have learning and behavioral problems when they get older. I wasn't sure if there was anything I could do to help him now, but I wanted to at least try. So, I've spent hours typing various words into google and following link after link after link. Some lead to dead ends, some I investigated further and a few, were absolutely brilliant.

I don't know how many emails I've sent off in recent months but it was a lot. Sometimes, I'd get replies back that were friendly, until I told them that I was only researching for now & wouldn't be making any financial commitment at this stage- they'd stop emailing. One service, bordered on harrassment and spent the better part of a week calling & calling & calling.... And then I got an email back from Andrew Brereton from the Snowdrop Program in the UK. Snowdrop is a Neuro-developmental program for brain injured children. Through the research I'd done, I saw some amazing results the program was achieving. The email I got from Andrew was from someone who genuinely wanted to help me. Andrews own son was severely brain damaged, he gave up his career as a pharmacist to study everything Neuro and managed to help his son achieve things that no one thought possible. When his son passed away, Andrew devoted his life to helping other children all around the world.

I spoke to Andrew a few weeks ago and completed an assessment for Max. Within that 40 minute conversation, Andrew gave me more answers than any doctor here had ever given me. He identified various issues that we'll need to work on with Max and he's in the process of developing a program for us. The basis of Snowdrop is that neural connections are formed through repetition. I don't know what our program will involve, but I do know it's going to be extremely intensive and challenging for us all.

I've learnt (so far), that Max probably has a sensory processing disorder. For example, we've had his hearing tested and he scored 100%. But, when you try to get his attention, you'd think that he was almost deaf. I tested this by banging saucepans about a meter away from where he was playing with his toys- no response. We know that he can hear us but things aren't being processed properly by his brain. Sensory processing problems are really common in kids with brain injuries. This kind of behavior is also common in kids with autism but at the moment, he doesn't fulfill the rest of the autism criteria. I pray that he never does.

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