Enjoying life: Chrissy in 2003 with her sister Alex

After years of suffering, your child is given a 'wonder drug' that transforms her life - then it is snatched away because it could kill her. Over the next seven years different alternatives are tried but nothing else helps. What do you do? Do you try it again, under close medical supervision and make the most of the quality time it gives your child - or do you dismiss it as too risky?

This is what happened to Chrissy with Naltrexone.

In previous posts I've spoken in more detail about how low-dose Naltrexone stopped Chrissy's self-injurious outbursts, and why it was discontinued. The following information from Autism Research Institute explains the physiology. It's important to not that when self-injury is associated with a biochemical abnormality, there may be little or no relationship between the person's physical/social environment and self-injury. Thus, the behaviour may occur in various settings and around different people but may occur less frequently during situations in which the person's behaviour is incompatible with self-injury, such as eating, playing, and working on a task.

Here, I'm more interested in exploring our dilemma over Naltrexone, which has divided opinion between some of Chrissy's medical specialists and I. Those that have done their research and/or seen its effects consider it to be a very safe drug but, some of them are wary prescribing it off-label. Naltrexone isn't a drug that is closely linked to thrombocytopenia but Chrissy has a history of rare and paradoxical side-effects from medication.

She was on three different drugs when thrombocytopenia was diagnosed, one of which was Epilim, an antiepileptic drug that she's been on since childhood that has proved the most effective at controlling her seizures with minimal side-effects. Naltrexone and Prozac were introduced together during drug trials when Chrissy was 14 in an attempt to quell unexplained self-injurious outbursts that were escalating in frequency and severity. The combination of the two was unusual and I don't know where the suggestion originated. Seven years of behavioural stability followed during which Chrissy was able to go on holiday abroad and enjoy activities in the community. Then when she was 21 Naltrexone and Prozac were withdrawn together because by the time her thrombocytopenia was detected it was a medical emergency. Her platelets reverted to normal levels within 48 hours so her doctors concluded that the thrombocytopenia was caused by a combination of Prozac and Naltrexone. I have

Epilim was continued but the dose was halved about a year later when Chrissy's platelets dropped slightly again. This shows that at higher doses Epilim alone affected platelet levels.

Three years later Prozac was re-introduced, albeit at half the previous dose. There was an improvement - not life-changing but enough to work out that if Chrissy wasn't taking it things would be even worse. There have been no further concerns over her blood count, which is checked routinely.

So Chrissy is now on two of the three drugs, albeit at lower doses, that she was taking during her thrombocytopenia episode. Do we assume then that Naltrexone alone was the culprit or was it a cumulative effect of all three drugs?

The quality of life question came up last week. Framing it was the fact that Chrissy had enjoyed seven good years on Naltrexone. Now her blood counts are fine do we risk re-introducing it under close medical supervision to see if she can enjoy another long period of relative stability? Of course there are finer points to consider, ie, could Prozac be swapped with an alternative anti-depressant; is there an alternative opiate-blocking treatment to Naltrexone? Both these options would mean more drug trials......


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

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

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/