Saturday, 26 March 2011

Sleeping with flowery curtains & the awesome power of autism

Lively banter between Chrissy & step-dad, Ian, last night. A lion in her DVD cartoon roared, making Chrissy laugh. Ian asked what the sound was. 'Evil' Chrissy said. Breadth of vocabulary astonishes us at times. How did she know that word & relate it to roaring? She will stop in her tracks to point out tiny details in a room that we'd never notice, such as the 'Home' written on my Homepride biscuit tin, or a miniscule spider hanging from a big window, & put the correct name to them.

When we put Chrissy to bed, she said she wanted to change her 'cushion' (pillow). I turned it over a couple of times, which usually does the job, but she wasn't having it. Her eyes darted around her bedroom, and alighted on a pair of her old flowery curtains in a pile in the corner. "Want flower cushion," she said. Ian showed her that they were in fact curtains but Chrissy insisted on having placed around her pillow before she would settle.

This morning it was 'I want two' of everything from tissue to toast. We tear tissue in half & cut toast up, & she's satisfied with that. Light switches went on & off, every door around her was shut until she felt calm enough to take her tablets and eat her breakfast.

During all Chrissy's waking hours her life & the lives of those around her are governed by the powerful force of her autism.

Wednesday, 16 March 2011

Getting our daughter back..

After the sudden move, I'd lost confidence in the quality of care Chrissy had been receiving. Doesn't take much. Trust had been shaken so many times by past events pre-hospitalisation. However, today, after a care programme approach meeting, my confidence was restored & my fears allayed. The meeeting was very well-planned & well-attended. I was impressed & moved by the obvious affection hospital staff had for Chrissy. It was clear that all attendees wanted the best for her & several health professionals said how much they enjoy working with her. One of her nurses added that they had all learned so much from Chrissy. I can't tell you how good it felt to hear that. We still learn so much from Chrissy too! I know how exhausting Chrissy can be but it's wonderful to hear that I'm not the only one who sees the rewards. The professionalism & attention to detail by the medical team in preparing their report was second-to-none. It's in stark contrast to all the meetings we used to have pre-hospitalisation with hidden funding agendas where Chrissy's healthcare needs were denied. I won't let it lie. There are too many vulnerable adults out there, with complex needs, like Chrissy, who don't have anyone to fight for them.

After the meeting we met with the CEO to discuss the problematic move. He was open & apologetic about what had gone wrong. I feel reassured that lessons have been learned, & this incident will not be repeated. I was reminded today how far Chrissy has come since she was first admitted in January 2010. We still have blips (xmas!) & there is still lots more work to be done but we are seeing light at the end of the tunnel. Chrissy is coming back to us...

Saturday, 5 March 2011

Dispelling myths: autism and showing affection

People with autism are not all 'trapped in their own world.' Many do show affection, but may express it atypically and on their terms. They may suffer sensory overload - and find hugs overwhelming - unless they initiate them. When a person with autism does form an attachment to you it can be draining but the rewards are huge. Our daughter loves having her hands massaged and hair gently played with, and being squeezed and squeezing back. She also enjoys horseplay and light rough and tumble. Today when I was clearing away the breakfast things, she approached me out of the blue, smiling with her arms outstretched for a cuddle and said 'I love you much.' When she hasn't seen me for a while and spots me coming, her face flushes with joy and she runs towards me. Yes, she will go to anyone who offers her something she wants - like chocolate - but she will only spontaneously approach a chosen few with such rapture.