Wednesday, 2 July 2014

Story One Hundred & Six - Life Now

Three years on from the court case, what is life like for the Nearys?

Steven is very settled in his new home and takes great pride in being a Cowley man. We have a fantastic team of support workers, who can't do enough to support Steven and me. Routine is the foundation stone of Steven's life, so each day has to be carefully mapped out. But once arranged, Steven can settle and then enjoy the things that are important to his quality of life. We hardly get any of the "challenging behaviour" that nearly led to Steven losing everything and being incarcerated in a hospital in Wales. In the last few months, Steven has come off his medication. His health was suffering with the enormous weight gain that goes hand in hand with the anti psychotic medication that so many autistic people find themselves on because of the laziness and indifference of the medical profession. His anxiety has increased a little but he has lost a phenomenal amount of weight. He still has meltdowns but most of the times, he is singing, or chatting nineteen to the dozen or laughing. He's doing okay.

I've suddenly found myself with a whole new career since the court case. I regularly get asked to speak at events all over the country - usually about the Get Steven Home story but since I started my blog, I'm often asked to talk about the social care issues that I write about. The feedback is always positive, so I guess that I've got something important to say and I've learned how to talk about the big issues without alienating the audience. The constant battles with Hillingdon have taken their toll on my health. I'd love to start bodybuilding again but know that is a pipe dream. Getting by on about 4/5 hours sleep each night is hard to sustain but I like to think I've always got the energy to try new things and push myself to tackle difficult situations.

For the future, I wish I could be confident. I know that when I'm no longer around, Hillingdon will take charge and Steven's life will change dramatically. He may still end up in that hospital in Wales. To paraphrase Baroness Jane Campbell, it's hard to live a life knowing that we are one bureaucratic decision, one egotistical professional, one abrupt change of policy from having out lives turned upside down. Life is pretty unpredictable at the best of times but when your life is so controlled by the State, each day feels like a precarious high wire walk. I can't see that changing - in fact, in the last four years, it has definitely got worse.

If I had one wish, it would be the complete ending of all assessment and treatment units. They don't do what they say on the tin - they are containers, places for people to be warehoused whilst the system around them grows obese and the owners count their enormous profits. It horrifies me that despite big words from the Government and the people within the system, more people are still moving into these places than moving out. Steven got trapped in one of these places. LB died in one. And each week, a terrified parent/carer will join the Get Steven Home group for help in getting their children out of an ATU or stop them going into one. 

It shames everyone.

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