Friday, 4 May 2012
I have this wound. It has been there for years, never properly healed, scanning over but never given enough chance to form enough new tissue to recover completely. Sometimes the scab gets knocked off, unexpectedly, unavoidably. Sometes I deliberately pick it, to see if it still hurts. It does. It hurts as much now as it did when it was fresh and new and I was unscarred, untainted. Sometimes it just opens for no particular reason. Blood everywhere when I'm least prepared for it. Occasionally it gets infected and I worry I'll have to cut my arm off. How will I manage? What will it feel like? Once open and sore it takes a long time to reform the scab, the throbbing pain a constant reminder, the affect on my functioning a sign. What caused this injury? Why will I never heal properly? What can possibly hurt this much? Surely there's something that can be done? Is there something wrong with me that makes this so painful? Why? Autism.
Thursday, 3 May 2012
So my journey towards securing a decent future for my son continues. I have started looking everywhere and anywhere for support for our case. I think that the stronger our arguments for a residential placement for James are, and the more knowledgeable professionals we have supporting us, the easier it will be in the long term. Right now it feels incredibly all consuming and engulfing.... I went to see James' paediatrician today. I took Edith but left James at school - they've only just returned after Easter so it would have been too disruptive for James to come out of school, but also impossible for me to talk with him there. I was close to tears as I described the witch hunt that has been going on with regards to James' welfare. He agrees with us that Janes is not in the best educational setting for his needs and that he will need lifelong care. It's a hard conversation to have, both as the professional delivering that message and as the parent sitting on the other side. All too often we shy away from the truth, feeling impotent and helpless with no good news. As a medical student you dutifully attend the seminars in breaking bad news, usually to an elderly patient or spouse but little is discussed about dealing with these sort of consultations. The feeling can be akin to one of having that handed the parents a life sentence with no hope for a pardon. It's emotionally draining for the person breaking the news. Imagine how it feels to be on the other side of that consultation. Hearing that the longed for baby you laboured hard for, nurtured constantly for years, loved unconditionally, fought for, watched with a deep pain in your heart as they disappeared into another world as autism took over their young body, will never live alone, never have a meaningful relationship, never produce grandchildren, always need the support of another adult is very painful. The grief has to be processed yet again. I live with this chronic sorrow surrounding James' diagnosis, and every so often the pain intensifies as another blow is dealt. But I have to see the positives in everything, and at least the professional opinion of a highly experienced and well respected paediatrician will strengthen the case for us.