Tuesday, 24 July 2012

After Hospital, What Next?

Last Monday's discharge planning meeting left my head all over the place. It felt like we were covering the same old ground, and coming up against the same brick walls.

A big stumbling block to giving Chrissy effective community-based support is that she isn't seen as a resident in the county where she'll be living. The NHS commissioner told us that this could close doors to a number of services run by the local authority, and observed: 'Chrissy could be disadvantaged simply because a social worker didn't fill in the right forms 9 years ago.'

The Local Government Ombudsman is still looking into the question of 'Ordinary Residence' as part of his investigation into the long-running funding dispute between the NHS & local authority over Chrissy's care.

Chrissy's plight and what Ordinary Residence means is summed up by Graham Faulkner, Chief Executive, Epilepsy Society, in a link on my post last year: http://jgregorysharingsstories.blogspot.co.uk/2011/09/specialsaturday-post-my-special-needs.html

Another big question mark hangs over the medical support that Chrissy will receive in the community. The learning disability team that worked with her before her eviction from a care home in 2009 covers a wide area in the community too, which further restricts our options. The team focused mainly on environmental causes for Chrissy's challenging behaviours & cited unsuitable residential placements with carers lacking the necessary skills to support Chrissy effectively. This led to care staff that worked with Chrissy saying they felt unsupported by the team when they asked for help, and worst still their inability to manage Chrissy's more extreme behaviours was frequently cited as their cause.

Ian & I believe the learning disability team's view was over-simplistic and downplayed a crucial factor - medication. The most marked long-term correlations in the intensity and nature of Chrissy's challenging behaviours have occurred with medication changes. So medication and environment must be optimised to help Chrissy achieve stability, and this has proved easier said than done in the two community-based residential services that she's lived in since reaching adulthood. Having said that, Chrissy has had some wonderfully open-minded medical professionals working with her over the years so we know they're out there!

Suggestions were made around the table about different types of housing options but it all came down to support that Chrissy might need in the community if she were to continue to have ‘blips,’ as her psychiatrist called them. Chrissy may be relatively stable when she leaves hospital but her mental state and health will always be precarious. There need to be robust contingencies in place or we could end up back where we started with support systems collapsing.

In September there will be another Care Planning Meeting. By then I expect progress to be be made to resolve the Ordinary Residence issue and a commitment, either jointly or singly, from commissioners towards making concrete plans for Chrissy's future care. This limbo situation can't go on...

I am a SWAN UK (Syndromes without a Name) blogger

Friday, 13 July 2012

Alex: A Sibling's Story

So, for a long while, my mum (a weekly blogger about my sister Chrissy) has wanted me to write a post about what it’s like to be a sibling of someone with autism (and a rare chromosome disorder, learning disabilities, epilepsy and challenging behaviour). As the Special Saturday theme this week is ‘siblings’, she managed to bribe me into writing about my sister Chrissy in exchange for doing my washing (thanks mum!). I can’t quite put my finger on why... but I’ve been very reluctant to write this blog. I guess thinking about my childhood, and even adulthood, with Chrissy would mean me delving into my deepest, and sometimes darkest, emotions and memories. We’ve had (and still have) some extremely difficult times, but we can’t change the past. And we certainly can’t change Chrissy!

I spoke to a researcher/journalist recently who wanted to explore what it’s like to grow up with a sibling with special needs. However, the woman had no interest in all the positive things I was excited to talk about. She was probing to explore the difficulties I experienced as a young child, which got me very frustrated. Yes, I shamefully admit there have been times when Chrissy is having screaming and violent tantrums when I have thought quite honestly and bluntly “I hate you” and even “life would be far less stressful without you...” (but it would probably also be very boring!). I find it painful to remember incidents that prompted those feelings, but what makes me feel the most guilt is that Chrissy can't help the destruction she causes… She was just born that way. I understand now that I am older that this anger in such crisis situations is natural, even between ‘normal’ (I dislike that word) siblings. I hope so anyway! So what I’m trying to say is that I really don’t like to dwell on how having a sister with autism has affected me negatively. This is the life we have, and it is very unhealthy to live one’s life thinking “what if...” If we did this, we wouldn’t be able to appreciate the best of Chrissy.

I find it much more productive and rewarding to focus on the many good things that have come out of having Chrissy as my sister. Her unique way at looking at the world is fascinating, endearing and she can be so hilarious. I have many a funny story to tell of experiences with Chrissy! Most importantly, she is to thank for my most deeply-held values. She has made me grateful of the advantages I have in life, rather than complain “why me?” She has made me learn to appreciate life, make the most of everything I do, and to never waste an opportunity, because I am lucky to have these opportunities available to me. Even just the small things, like going out with my friends... Last week Chrissy was waving at me through the window from inside the house as I left to go on a night out. I got a lump in my throat thinking “poor Chrissy”, practically a prisoner in her own home. I’ve grown up seeing that people with learning disabilities should have equal value to us all, but unfortunately often do not. I will never forget the disappointment and upset (and embarrassment and shame) I sometimes felt as a child as a result of peoples' ignorant and judgmental comments when we have been in the community with Chrissy. These feelings turned to anger when I was a teenager and, luckily, acceptance now I am an adult. But it shouldn't be this way. Why should she be locked away and not allowed to participate in society just because she is ‘different’ and may not fit with 'societal norms'?! My experiences of growing up with a special needs sibling have taught me tolerance and to never judge other people and families, especially parents, as you can never truly understand what someone else has been (or is going) through.

What is most significant for me personally is that due to Chrissy's vulnerabilities, I feel so incredibly passionate about helping others and improving the lives of those who may be less fortunate than myself. I have developed this deep empathy for others with difficulties that has led me to my current career as an Assistant Educational Psychologist for the National Autistic Society. Having a sister with autism has inspired me to do; my degree in Psychology, a range of voluntary work, work as an Applied Behaviour Analysis Tutor and Special Needs Teacher for young people with autism, my current role and I am hoping to get a place on the doctorate course in Educational Psychology this year. I feel lucky to work in a profession I am so emotionally invested in.

Finally, I recently found a letter from one of my closest friends and old next door neighbour, written to me when I was moving away, which ended with "good luck getting your future job as a child psychologist." (Which she definitely didn't spell correctly!) I was in year 9 (14 years old) at the time. Even from a very young age, I was aware of all the professionals that worked with my complicated sister (and brother – but that’s a completely different story!), but I felt so powerless to help. I vowed to myself that when I was older, I would have a job helping children like my siblings, and I would care more than anyone could. I felt tearful reading the letter, as it suddenly hit me that I am doing what I always set out to do. And this is all because of Chrissy.

I think the true reason I’ve put off this blog is because I cannot find the words to describe how much my life has been enriched and fulfilled by having Chrissy in it, and I’m afraid that nothing I write will do her justice.

Chrissy aged 9 and Alex, 5

My wedding in 2003

Xmas 2008

I am also a SWAN UK (Syndromes without a Name) blogger

& this this is part of our #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/

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