Wednesday, 31 July 2013
Being Chrissy's mum
A beautiful day...
But behind the scenes, I'm struggling with feelings of sadness and loss. We were so thrilled to get Chrissy back at the end of last year - to see the return of her zest for life and her enthusiasm for doing jigsaw puzzles, to take her on holiday, out with family, and shopping for new shoes, her grandma's reaction when we took her up north to visit her for the first time in years.....
Now, Chrissy's slipped away from us again and I'm gripped by the green-eyed monster whenever I see or hear about other adults with learning disabilities going out with their parents. It's routine for many such families but for us, outings and holidays with Chrissy are rare and precious events, often fraught with drama, to be celebrated when they go well. Chrissy just can't manage them at the moment and I realise that we're running out of treatment options. Her epilepsy no longer responds to monotherapy and nearly every secondary antiepileptic drug out there has been tried. She is so acutely sensitive to the neurological mayhem these drugs can cause that they stop her living her life. She isn't complying with bathing, teeth-cleaning etc and is still refusing food. Mood swings continue to be marked - one minute smiling and calm, the next screaming and shouting. She is disrobing on the unit but we haven't seen this at home - just shoes and socks off. She has bruises all over her body again from self-injurious behaviour - the only way she can express her distress. Two weeks ago I'd noticed bruising on her neck & had to raise my concerns at a higher level. I've never seen bruising there before & we're now awaiting the outcome of further investigations into how & when it happened. The explanation I got was too vague for comfort.
The weekend before last when that picture was taken Chrissy was so excited to see her brother, Jamie. His girlfriend, Penny, looks a bit like her sister, Alex. Chrissy thought she WAS Alex - & not just fleetingly. When Alex herself turned up later, Jamie and Penny had left. Chrissy transferred the name seamlessly to the real Alex. I'm uneasy about her confusion. She's always known who close family are even if she forgets other people's names. Another point to mention to her neurologist on Thursday when her antiepileptics are reviewed. The deterioration in Chrissy's health & mental state is something that he will be trying to resolve. The unit has no epilepsy specialists - the neurologist is based at a local NHS hospital. There's nothing more the unit can do for her now and, given the current situation, it's detrimental for her to stay there. So why is she still there?
Some of the housing barriers we've faced have shifted but new ones have popped up. We made a successful bid on a council house in the village but, although we were never given the chance to view it inside, we went with the professionals' views that it was unsuitable due to a number of safety issues in relation to where it was situated and the internal layout. The more housing options we consider the clearer we are about non-negotiables but it's hard to keep having your hopes raised only to have them dashed again. There are very few houses that become available in this area but Chrissy still has priority banding so I will keep checking the social housing website. The other option that's starting to look promising is shared ownership. A specialist housing association has finally come on board and we're having discussions about a house for sale nearby that meets their budgetary requirements. They are concerned about the noise impact on neighbours from any house with a party wall, even with sound-proofing, but a detached property is out of the question due to cost. The noise/disruption to neighbours issue must be a common theme with most people being moved out of assessment and treatment units into supported living and the Winterbourne View Joint Improvement Programme needs to address this.
The tendering process for providing the care package is also moving painfully slowly. I know we'll get there eventually but Chrissy has now spent 3 1/2 years in a locked ward. "What must it be like for her?" I asked Ian recently in a tearful moment. "We'll never know," he said. "You try to put yourself in her shoes but you can't see it like she does and there's no point even speculating."
He's right of course and I need to get a grip - but what mum wouldn't feel like I do? My heart is always at war with my head. I long to kidnap Chrissy and bring her home but I know the situation would be unmanageable, and certainly not in her best interests.
Last week Alex asked: "Do you ever resent Chrissy?"
"No," I answered as honestly as I could. "None of this is her fault. It's the situation I resent."
Reflecting on this question today I can recall times when I've felt fiercely resentful, but only in passing, the same way that I resent Ian when he keeps does something infuriating no matter how many times I ask him not to - like dumping his work briefcase on the kitchen floor!
Alex has just started work as a tutor at a unique school for children with autism, using ABA (Applied Behaviour Analysis) http://www.ambitiousaboutautism.org.uk/page/treehouse_school/teachingandlearning/aba.cfm She's very excited about this new opportunity. She has always felt helpless in the face of Chrissy's suffering, even as a small child. Now she feels able to channel her conflicting emotions, and to use her valuable family experiences and training as a psychologist and teacher to improve the lives of other young people who struggle with autism and learning disabilities. Perhaps we can, in consultation with Chrissy's support team, try some ABA strategies once she moves into supported living.
Naively perhaps, I'd once hoped that similar autism-specific approaches would be used in assessment & treatment units & residential homes that claim to specialise in autism. Maybe one day.....
I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN (syndromes without a name) blogger