Just wanted to share!
We started on a new drug a few months ago, and it seems like there has finally been a change. Seizure numbers dropped dramatically and then, he last one was 10 days ago. Fantastic news? It sure is. With it however come other changes. Imogen is a unique mix (as we all are I guess) but when something changes there is always a knock on effect. This time her behaviour has been affected and she swings widely from moodiness to crazy bouncing off the walls hyperactivity with the swiftness of a mouse trying to dodge the capture of an owl meaning she is still awke well into the night and then awake again bright as a button at 7am! We also discovered years ago that when she had more seizures her dystonic, tight arm would loosen off. So, it is no surprise that her arm has tightened up again. She is amazing at coping with this though; she never ceases to amaze me when I find her folding, cutting, sticking etc using her chin, elbow, foot or anything else available. Things that I know I would get unbelievably frustrated with and probably throw across the room she takes in her stride and beavers away at. Yes it takes an inordinate amount of time and she doesn't run on any time that relates to GMT but do you know what?
I've decided I DONT CARE!! I have made a decision that I should have made along time ago, to harness and encourage her in her creativity. When I find her making a fairy house at 11pm in her bedroom with paper, scissors, Sellotape and cardboard everywhere. When I find her feet covered in red paint in the morning because she has woken in the night and painted the aforesaid fairy house. I will celebrate. I will be glad that she is an overcomer.
Sir Ken Robinson http://www.ted.com/talks/ken_robinson_says_schools_kill_creativity?language=en talks about our (school) curriculum killing creativity. That we have created an academic inflation where the core subjects are the only currency. He is a true advocate for the importance of creativity and the arts. And I've decided I think he is right. Don't get me wrong, I have no problem with academics (I'm finishing my masters at the moment), but when that is the only 'valued' box we give children to fit into, and they don't fit, this is a problem.
When I look at Immi with her weak side, her lack of organisational skills, her poor reading ability, her lack of attention to certain things, her sensory needs, her non existent awareness of time, I know she will never fit into that box. And if I try to fit her in, and if I don't protect her from a society that would say 'if you don't fit you are no good', I am not being a good parent. So, I will take notice of the things she enjoys, the things she feels she is good at and I will celebrate them, I will allow her space and time for them, i will encourage her I them. I will hold back the urge to hurry her, to contain her mess, to mold her into something that fits the box and destroys her in the mean time. If she can overcome lack of mobility, lack of academic prowess, lack of organisational ability and be something amazing, something beautiful, creative and inspiring, then I can overcome what the world has moulded me into. I can overcome my lack of being able to step out of the schedule, my lack of being able to see past the academic value of education, and my fear of finding a different path.
Most of us walk that well trodden path, the one that we can all see. It has sign posts, guides, handrails for the rocky parts. But, you know what, the world needs Imogen and those like her, because they walk another path, they have to find their own path, hack their way through forests, clamber over rocks, wade through rivers. They are hard paths to find, but they are adventures, they are colourful, they are unforgettable. And they are the journeys we all learn from.
