Living at Home again: An Impossible Dream?

West Meon Church

A magical morning with Chrissy. We walked to the village shop for a newspaper and Maltesers. Chrissy behaved perfectly so we stopped for a photo-call in the churchyard. Later as we looked through the pictures on her laptop, Chrissy's face was wreathed in smiles as I showed her how to move the cursors around. She giggled as she made herself disappear then re-appear on the screen – now you see me, now you don’t!


Having it all - enjoying lunch, Cbeebies and today's photos!

My last post was about taking a stand. I can reveal now that it was over Chrissy's Quetiapine - I was so desperate for her to come off it that I stopped it for three days on holiday. Then I admitted what I'd done to the ATU and begged them not to re-introduce it as we had seen improvements in Chrissy's behaviour and mood. It was a rash decision on my part and I've explained my rationale on here before. I had no concerns about the risks as we had seen similar improvements when the ATU had 'forgotten' to give Chrissy half the prescribed dose for a fortnight. For reasons I completely understand her doctors reinstated the drug but immediately began to 'review it downwards.’ (They need to monitor effects.) Chrissy is now on only 50mg once a day. So far so good, although her ward nurse told me that Chrissy had been slightly more agitated at meal-times lately, bending her fingers back and asking repetitive questions about food. However, her nurses have been able to distract her.

As the weekend's gone on, Chrissy's had her moments but she's been relatively easy to pacify and fully engaged in everything we've been doing. As a general reflection of her improved mood over recent weeks, her hair is growing back and looking more lustrous (she isn't pulling it out), and her body is no longer marked by self-injury.

Now Chrissy's behaviour has settled down, I’m feeling more torn than ever about her future. We’re no closer to finding a way to set up the bricks and mortar part of the single service unit option (where Chrissy lives on her own with 24-hour support). You've seen from previous posts how some issues that crop up in residential care haunt me. Now I’m wondering again if there's any way we could make it work for Chrissy to live with us permanently.

Ian doesn't believe that living with us would be the best thing for Chrissy. He fears we could go back to square one if her condition were to deteriorate again. As there's every chance, given her history, that this could happen, anything that's put in place would need to be watertight to minimise the risks of further traumatic moves. It may sound selfish but we're in our fifties and enjoying more freedom now that our children have grown up. It would serve no one if we were to go backwards to a time when Chrissy's outbursts ruled our lives and I felt like a prisoner in my own home with her too unsettled to take out or leave with a care-worker. We would be setting ourselves up to fail if we were propelled back into the fray of pointless crisis meetings and battles to get effective medical treatment and support. So there would need to be strong contingency plans in place, for example, an immediate return to the ATU for further assessment and, if necessary, treatment - and how enforceable would those plans be? I’ve lost all faith in Chrissy's commissioners, with their endless broken promises and buck-passing.

Another question is whether we could devote the time, energy and patience to manage Chrissy's needs as they should be managed and, the biggie that terrifies all parents of disabled children - what will happen when we're gone? As one of the provisions for her future care, shouldn't we ensure that she is settled somewhere that doesn't depend on us being around?

Anyway, it’s all hypothetical right now and I may have blogged myself out of it! Ian’s far more pragmatic than me – I follow my heart but as my book title says sometimes ‘love isn’t enough.’ It’s early days and I'm jumping the gun – a date for discharge from the ATU has yet to be agreed. Chrissy's epilepsy is still not as controlled as her doctors would like it to be and if another anti-epileptic drug is trialled she will need to stay in the ATU for further monitoring as she's had such nasty reactions to the last two.

At the next care planning meeting on 22 October I propose that we ask commissioners to suggest a support package template if having Chrissy back home is a route that Ian and I could agree to explore.....

Since I published this post I was given more food for thought when another mum of a child with learning disabilities wrote a piece for the Daily Mail that included her take on the residential care dilemma. She questions whether it would be cruel to leave her daughter unprepared and unprotected when her parents die: http://www.dailymail.co.uk/femail/article-2219305/The-daughter-taught-meaning--love-Lady-Astor-pays-moving-tribute-autistic-little-girl.html


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

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/

Advocacy & Learning Disabilities: Special Saturday

Going with this week's Special Saturday theme - sharing my life with Chrissy has made me acutely aware of the unique role advocacy plays in supporting individuals with learning disabilities.

You may think that a person with learning disabilities who has a pro-active parent and/or care manager (& many don’t) may not need an advocate - but an advocate is uniquely placed to act with minimal conflict of interest. This conflict of interest issue is key to advocacy – in any situation other people will have interests that will conflict or compete with the interests of the person with a disability. Taking independence skills as an example - a parent may be over-protective and make choices for the person with learning disabilities, stifling their ability to gain independence skills. Due to funding constraints, a care manager may be reluctant to provide the necessary care support for them to gain independence skills. The vulnerable person’s relationship with an advocate is different to those with relatives or professionals in that it is a partnership built on trust and confidentiality. By identifying and minimilising any of their own interests & needs that may conflict with the person's they're supporting, an advocate supports them to put their choices into effect. The advocate does not make choices for them or have a vested interest in outcomes of granting their choices.

Being independent, an advocate is in a unique position to identify what the person’s needs are and to and try to understand what it is like to be in their shoes. An advocate’s objectivity may enable them to focus on key issues in sometimes complex and sensitive situations and take action on the vulnerable person’s behalf. Their unique awareness of the person's wishes and choices may enable them to take the initiative by creating a sense of urgency and challenging other professionals.

People with a learning disability are often portrayed as less than human & their disability can lead to low status & a devalued role in society. They may experience discrimination, neglect, exploitation or abuse. Their human and legal rights may be denied, and even where rights exist, access to ways of enforcing them may be restricted. An advocate has a unique role in supporting the person with disabilities to access and exercise these rights.

Advocacy can also play a vital role if people with learning disabilities are confronted with situations they find difficult or they feel they are not being listened to. An advocate’s role may entail supporting their advocacy partner to make choices and express their views at meetings with professionals. It could mean being on the person’s side in situations where they could be taken advantage of, or fighting for the person’s right to lead a more fulfilling life.

As well as representing a person’s interests, an effective advocate may make information, advice and support services more accessible, and lead to access to different forms of advocacy, such as a solicitor or Citizens Advice Bureau. For example, the local CAB can support the individual to get the correct benefits or the Disability Law Service may be able to advise on legal situations.

To carry out their role successfully, an advocate must understand and be committed to the values and principles of advocacy, that regardless of whether or not we have a disability, we all have the same value and rights, and should be given the same opportunities to fulfil our potential for growth and learning and lead purposeful lives.

Finally, by offering conflict-free support and being on the person’s side, an advocate may enable people with learning disabilities to transform their lives by ‘exercising choice and control,’ as recognised by the Government White Paper of 2001, ‘Valuing People.’ Ultimately, advocacy serves to promote the welfare, wellbeing and social inclusion of people with learning disabilities, to protect their human and legal rights, combat discrimination, and, overall, to improve their quality of life.


I have written this post as part of #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday; following on twitter - @Specialsat and retweeting hashtag - #specialsaturday; reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/

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/

Sunshine Days

Gather Ye Rosebuds While Ye May by John William Waterhouse

Mum pointed out the poignancy of these words, etched in stained glass on the front door of my childhood home in the Lake District when we went back for a visit in 2008. (Pictured in front of the door are me, my husband Ian and Chrissy's younger sister Alex).



The carefree days we'd spent there from 1968-1970 before moving back down south for dad's job, had been some of the happiest of our lives. Then, we'd been blissfuly unaware of the double whammy that lay ahead - dad's early onset Alzheimer's and the problems with his first grandchild.

Being Chrissy's mum and, of course getting older, has highlighted for me the value of seizing the moment and treasuring the good times.

Yesterday was one of those times. Chrissy was having a sunshine day, and lit up the house with her smiles, laughter and funny comments. I banished fleeting thoughts of 'I wish you'd been like this last Friday at the zoo.' With Chrissy, you have to go with the flow.

My book is threaded with references to such sunshine days - Chrissy's doctor noting her 'delightful social manner,' a trip to the circus where her whole body vibrates with joy, her uninhibited exuberance as she conducts a small orchestra at a village fete, her face wreathed in smiles at a school meeting as she shows me her record of achievement book.

Her wonderful times are as unpredictable as her awful ones - but yesterday, whatever it is that robs her of her equilibrium stayed well away. She was so joyful that she even sang to herself as she pottered around the house and, as she watched her new Snowman DVD, which I'd bought to replace one she'd broken, she enthused: 'I love Snowman!' After dinner she made us laugh by asking: 'Mummy can I have something else to eat?' and immediately admonishing herself: 'No, Chrissy, you've already had your tea.' Beaming smiles and social chit-chat replaced last week's moans, groans and outbursts. With encouragement, she was confident enough to carry out several self-help tasks independently, like taking her shoes off and changing into her slippers, and going to her bedroom by herself to choose DVDs to bring down. Normally, she demands: 'you help me!'

I've learned over the years that it doesn't matter where you are or what you're doing when Chrissy has a sunshine day - you simply bask in the warmth of its glow & enjoy it while it lasts.....



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