School at home has been a pleasure this month. I love the freedom that you get outside of the classroom. This past week we have been using the music of David Bowie as our theme, mostly because Charlie seems drawn to it which makes it easier to teach him. Now, David Bowie used to cut up words and put them on a table and shuffle them around as a way of making lyrics to a song, hence the title to this post. Ironically it’s so similar to the PECS system of teaching some autistic children about langauge and how to get it the right way round. Charlie’s speech is still quite abstract at times. I liken it to learning a different language when the grammar seems back to front. Perhaps Charlie would be good in France? In any case David Bowie’s creative way of songwriting is called genius whereas my kids grasp of language is called challenged.
This week Charlie became Major Tom (read into that what you will) and sent Ziggy Spudhead to the moon in a homemade rocket. His Mr Potato Head obsession continues to flourish and both he and them dressed up and got all dramatic to Queen Bitch. Fascinating. I loved it. There has been music, drama, dance (of a fashion), painting, story telling, building and a bit of maths. Most of all there has been lots of laughing as there always is. I do believe it is vital for anyone recovering from cancer. Social skills are slow moving. We’ve been out to shops just to say hi to people but some days it’s all a bit of a car crash resulting in verbal killing and screeching. More firestorms.
Otherwise this month I’ve been mostly mad, in the annoyed kind of way. Autism and Cancer? Come on! Really? Those three words buzz around my head like an annoying wasp. Just when I manage to get my mind onto something else that wasp will land on my shoulder and whisper “cancer” into my ear making me shudder. Charlie has had so much to deal with in his short life; sensory overload, speech problems, balance awkwardness, communication difficulties. And now recovering from treatment for neuroblastoma which has left him unable to walk much as yet and angrier than before. All of which leave an intelligent, sensitive boy feeling ashamed and stupid that he isn’t able to function like everyone else. So I’ve been mad. More than usual.
This time last Bank Holiday I had just landed on the hospital ward with Charlie about to start our neuroblastoma nightmare, just been given the news that ripped through our family like an H-Bomb. When nobody thought he stood a chance, I looked into his iridescent blues and there I saw his strength and determination and I knew he would survive. That’s why I think it’s a wonderful life. Amazing, breathtaking things can happen. I’m stunned that anyone makes it to old age in all honesty. How fragile and resilient we all are. And who knows what the future holds for any of us? Charlie may turn out to be a drummer like his Daddy or a fantasist like his Mum or perhaps he will take a job at Subway making his sandwiches or at Waterstones surrounded by his love of books. If I had to say right now I’d bet he would make an amazing actor. His ability to read and retain large chunks of script, his fondness for dressing up and getting into character and his lack of embarrassment or stage fright in standing up in front of others make him born to it. The footlights beckon I reckon. As long as he has a happy and healthy life I don’t much care what he does.
Remember as a kid looking through a Kaleidoscope? All the multicoloured prisms swirling and tumbling at high speed, dancing in front of your eyes and blurring your vision. That’s like my life with Charlie. Full of colour, wonder, confusion and chaos and occasionally too much of it.