https://www.youtube.com/watch?v=wOW4-oWnDPw
I can remember listening to Japan's Ghosts over and over again on my cassette player in my bedroom back in the 80's. All those minor chords, the lyrics and I probably did fancy David Sylvian a bit.
On the way back from our most recent visit to Kings College Hospital after another round of blood tests and discussions my young man said to me "I want to find out more about how the brain works, how lyrics can express our feelings" Then that evening on TOTP2 Mr Sylvian caught me cold and I understood what my young man was trying to figure out.
Music, poetry, literature, art and dance are the real therapies they are how we find a common cause, a kindred spirit, a collective voice and relate to each other.
My son is now driven, he's found that spark and he's off. Back at Uni, no more admissions.
January did come around too fast accompanied by flu season and the NHS in crisis. I was on full alert with anxiety at a level that was exhausting. We'd had our flu shots and I'm so glad we did. Lifesaver, quite literally. We were lucky enough to see the top consultant at Kings. Autoimmune Neutropenia was diagnosed. My young man has rogue anti bodies that kill off his neutrophils, how or why this has happened no one yet knows. For now he has to have injections every other day to boost his neturophil counts and keep his body ahead of the game. "You can put this behind you young man and get on with your life now' said our home town hospital consultant. Just like that. No. You can't. 5 episodes of Sepsis in the space of 3 months is traumatic and the anxiety my young man has been left with is epic.
But there he is, following his passion. I'm full of admiration. Life is not that simple either. Injections everyother day that have to be kept in the fridge and given in the evenings, trust me that makes life difficult. The thought that if you miss one young man could end up having Sepsis again keeps you living on the edge. So I'm runing around after him with cool boxes and antiseptic wipes trying to get him to rehearsals and gigs and support sessions but gradually helping him to be independent again and deal with all this by himself. That's going to take awhile because on top of all this he still has Autism. The ghosts of my life. But he won't be stopped, he has a lust for life that is contageous but exhausting.
Meanwhile, where was I in all this, where have I gone? When I find myself alone As a parent you hear alot of talk about codependency. I heard it recently on a programme called The Hunted. On it was a young man with Aspergers running from the hunters. (he outwitted them and won btw) One of the hunters described the relationship between himself and his mother as codependent. My blood began to boil because believe me as parents we want to pull away, we desperately crave our own lives and opportunities but our young people need extensive and quite often intensive support and I say this very loudly NO ONE HELPS. For high functioning individuals on the autistic spectrum fit no criteria for support from a local authority. There just isn't the money.
But just imagine if I could go to Uni, if I could get a job,if I could feel independent. I could add to the economy, give back, be part of something again. Instead call me codependent and the one to blame. The simple life no longer there.
Today my young man travelled to and from Uni on his own, came home and showed me a video uploaded by a fellow student of him playing The Clash with a group of them. He looked so happy.
Perhaps my work here is done?
Broken every door.
