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

Eating Issues: A Special Saturday Post

Here, Chrissy is clutching her lunch-box in a carrier bag with its handles tied in a bow. Taking a packed lunch and indulging her food-related rituals enabled us to enjoy a trip to Exbury Gardens yesterday with her two nanas.

Chrissy has always been obsessive about food - from failing to thrive as a baby to over-eating as an adult. As a newborn Chrissy's suck was weak and she vomited frequently. Even as an infant, she suffered prolonged screaming bouts in which she would fling herself backwards as if in the grip of a painful spasm. I suspect she suffered from reflux as this is a characteristic of her chromosome disorder.

At her six week check I was advised to put her on solids as she wasn't gaining sufficient weight. The dramas at mealtimes began in earnest then. Chrissy choked, gagged and vomited her way through the weaning period, especially the stage 2 baby foods with lumps, as I agonised over where I was going wrong. I pureed her food for several years as she seemed unable to chew. The vomiting eventually eased but Chrissy's appetite remained poor. She limited her diet to a few select smooth foods, such as Petit Filous - the little fruit cream cheese pots, and Weatabix, mashed up with lots of milk.

Changes came gradually as Chrissy grew bigger and wanted the same foods as her siblings and peers - but she was still very picky and ate painfully slowly. When she was around 10 and anti-psychotics were introduced, her appetite increased and her diet became more varied. It got to the point where she'd eat anything and never seemed to feel full. Her weight decreased again when she went on Prozac and Naltrexone at 14, and during her six-month stint on a gluten and casein free diet. Her weight dropped to five stone when she was 22 and had the platelet problem. She would only eat cheese flan initially, then ate so little we wondered how she survived. After her hospitalisation, anti-psychotics were re-introduced on a daily basis, and she became increasingly obsessive about food. In fact, before her microdeletion was found she was even tested for Prader-Willi Syndrome, a genetic disorder characterised by over-eating and food obsession.

These days, Chrissy is overweight and her life revolves around food. She repeats the same food-related questions every couple of minutes 'what's for dinner?' 'What am I having?' 'Is it peanut butter?' etc. If we ignore her or don't answer in the right way she gets increasingly agitated and if she has to wait for food her obsessions will escalate into a self-injurious outburst. Due to these outbursts, particularly her stripping behaviours, we're very nervous about taking her out of the house. The trip to Exbury was a ridiculously ambitious plan but I knew that, for different reasons, it was a special place for Chrissy's nanas, and at this time of year it's at its most spectacular. We got there late - about 3.30 - because we couldn't rouse Chrissy from one of her sleepathons - but the long deep sleep had left her full of life, and she was thrilled to be there. The only heart-stopping moments came on the moving steam train when Chrissy announced several times with increasing urgency: 'I want to get off! Thankfully, Ian's iron grip, and our frantic distraction techniques and shameless bribery ('shall we open your picnic? What would you like next - cake or chocolate mousse?') worked a treat. She finished her picnic later in the most idyllic setting imaginable surrounded by a riot of colourful blooms, including the glorious rhododendrons Exbury Gardens are famed for. I'm so glad we decided to risk it. What a magical afternoon!

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

Living without a Diagnosis

I wrote this piece for Women's Realm when Chrissy was 12....

Chrissy is mad about music. Last summer the whole family went to our local fete in Hemel Hempstead where a brass band was playing. Before I knew it, Chrissy had barged past the conductor and was conducting the band herself! Fortunately the musicians found it highly amusing.

This eccentric, endearing behaviour is typical of Chrissy, who finds it impossible not to start dancing if we go into a shop with background muusic. She has moderate to severe learning disabilities but I don't know the exact nature of her problems. I've never been told what to expect from her in the future, and, hardest of all for me to come to terms with is the fact that she's never had a diagnosis.

I've battled through some tough years and I know there'll be more obstacles ahead, but I've learned to enjoy Chrissy's cheerful, funny manner and to live with her violent tantrums and obsessive behaviour.

When Chrissy was born, 10 days late, there was no indication that anything was wrong. My husband and I were thrilled with our first-born. We used to call her our 'air-traffic controller' because she waved her arms so vigorously.

The first signs that something might be wrong were feeding difficulties, poor weight gain and a general floppiness. Because I was an inexperienced first-time mum, I wasn't sure what was 'normal,' but I gradually realised that something wasn't right. I was gripped by a terrible anxiety and would be awake at night wondering what it could be. Every time I talked to my husband about it, we argued, and he made me feel that I was wishing problems on Chrissy. My mum agreed that something might be wrong, though she said my sister, brother and I were all late developers. My brother didn't walk until he was 18 months old and went on to read history at Oxford University!

When I look back over the early, bewildering times, I wonder if I would have enjoyed Chrissy more if I had expected less of her. I spent ages coaxing her to do what other babies did naturally - to reach out and touch a toy, or eat something. I couldn't help comparing her to other babies around the same age who were larger and more forward than her.

After a health visitor noticed Chrissy's poor head control, she was referred to a paediatrician. By then she'd started to have epileptic seizures so she was sent for a brain scan. We were told it was normal and that Chrissy was a delayed developer. When I asked questions I felt that I was being dismissed as a neurotic first-time mum.

Whenever Chrissy was admitted to hospital with her uncontrollable seizures, I'd sneak a look at her notes, wondering if they contained clues as to what doctors suspected was wrong. I remember reading one note by Chrissy's paediatrician: 'Mrs Gregory came to see me, worried as usual. Asked again if her daughter was handicapped.'

I went through a sort of grieving process. Sometimes I felt angry; at other times I would cry myself to sleep. I began to read books to try to diagnose Chrissy myself. I read one book about a family coming to terms with having a baby with Down's Syndrome, and began to think how different it must feel to have a label given to your child early on - but then I realised that many children with recognised syndromes don't follow a guaranteed pattern of development. Some children with Down's Syndrome have profound learning disabilities with life-limiting health problems while others are very able and healthy. It was some comfort to learn that, for about 40 per cent of children with learning disabilities there is no known cause or name for their set of symptoms.

After much persistence on my part, Chrissy was referred to the Great Ormond Street Genetics Clinic when she was nearly two. The geneticists tried to answer every question I had and gave the impression that they had all the time in the world for us. Every inch of Chrissy's body was examined, and all abnormalities, such as her weak muscle tone and short stature, were logged into a central computer to see if they were indicative of a certain genetic condition.

Two syndromes were suggested as possibilities but chromosome tests were needed. I looked through medical books and couldn't see how her particular characteristics fitted either syndrome and, in due course, we were were told that Chrissy's chromosomes were normal.

My search for answers continued. We were seen about every four years at the genetics clinic. One geneticist thought Chrissy was similar to children he'd seen with something called Smith-Magenis Syndrome. When I read more about these children I thought I'd finally found out what was wrong - Chrissy shared so many similarities with them, such as prolonged periods of distress and her way of flapping and clasping her hands in a strange manner - but the tests showed that Chrissy didn't have the characteristic deletion on a chromosome that's associated with Smith-Magenis Syndrome.

At this point, I stopped searching for answers. I saw how fruitless it was to be so fixated on the idea of a diagnosis - after all, we'd already learned to accept Chrissy's problems and love her as she is.

Our day-to-day life can sometimes be fraught. It's difficult for us to go out as a family because Chrissy finds new environments unsettling. Sometimes I dread taking her out on a routine outing - say to buy her new shoes - because her behaviour can be so unpredictable, and her siblings get upset when Chrissy barges into their rooms uninvited or breaks their possessions. As she grows older her outbursts become more difficult to manage. She still has prolonged periods of distress with no apparent cause. We call them her 'screamings' and they can last for over two hours. Sometimes she'll have two or three in one day and will deliberately harm herself. No one can tell me why she behaves like this and, although I've dealt with them for years, they still upset me.

Yet, despite the challenges Chrissy's brought us, she has shown us a unique way of looking at the world. I love it when I see Chrissy sitting with Alex or Jamie, singing along to music tapes, or when she copies people's facial expressions or says something to make us laugh. Whatever her problems, we're very lucky to have Chrissy as part of our family.



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

Defining Normal

Chrissy tickling her feet at the top of the garden

Normal for us is leaving Chrissy on a locked ward & trusting paid strangers to be kind to her. It's letting go & accepting that a professional team does a better job than we can at home. It's acknowledging that once a week our lives will be both enriched & turned upside down by her visits. It's avoiding her self-inflicted wounds when I towel her dry after a bath. It's shaving her legs & wiping her bottom without a 2nd thought. It's reaping her gentle smiles, basking in her sunshine times & marveling over her different way of viewing the world.

Although Chrissy isn't at home full-time with us anymore, she is still a huge part of our lives. Most days it's normal for me to be writing to or speaking to one of Chrissy's doctors or other professional involved with her care. On my desk now is a letter about our Disability Living Allowance appeal. Behind me, ready for filing are documents relating to my application for Deputyship so I can legally act on Chrissy's behalf, ie sign a tenancy agreement if she moves to a rented supported living home. On the floor is a musical book for toddlers, entitled 'Bedtime Songs.' I guess an outsider looking in would be surprised to learn that it's a gift, waiting to be wrapped in pink Sleeping Beauty paper, for someone's 28th birthday.

All this has been our normal for so long, I've found #definenormal a huge challenge!


I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/


And for #Specialsaturday. Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
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Good Care Planning & Changing Needs

'Hooray!!!'

We managed a walk to the village shop yesterday:-) There were a few hairy moments when we got there as Chrissy was like the proverbial kid in a sweet shop & got paralysed with indecision, then wanted everything in sight. Giving her a basket to put her goodies in reduced her anxiety (once she'd made it 'symmetrical' by re-arranging the handles). As we got near home I praised her for being a 'good lady' &, as you can see from the photo, she cheered!

I'd been inspired to take Chrissy out again after being told at her CPA (Care Planning Approach) meeting yesterday morning that her carers had taken her to M&S & a couple of other places without any major dramas.

Chrissy has two CPAs a year where the professionals and I sit around a table to discuss and plan her future care needs. Anyone with a range of complex needs like Chrissy's is entitled to have a care plan that's regularly assessed and reviewed. At the meeting everyone agreed that since recent drug changes Chrissy remains much more alert and interested in engaging with activities. The downside of this 'awakening' is that her outbursts are more violent, and she has hit staff and pushed tables over. We haven't seen this degree of aggression at home but she's more diva-ish than ever with a steely determination to get her own way. Last night she refused to go to bed until the early hours. There's no point in trying to force the issue so we turned all the downstairs lights off & left her to it. She soon came up and said 'you put me to bed,' but when we tried, she got caught up in her rituals, moving things around in her room so surfaces were clear and certain items, like her cover, were symmetrical. She kicked off several times but we got there in the end. We had the same rituals this morning at breakfast time. It tried my patience so much that I wanted to throttle her but Ian was amazing with her, & managed to de-escalate several potentially explosive situations by keeping calm and, somehow, just knowing exactly what to say & do at the right moment.

We still have some way to go before Chrissy is stable enough to leave the assessment and treatment unit and I still feel no clearer about what sort of home setup will suit her best. Now she is more alert her needs are changing and we need to look at a range of options. Cluster homes were suggested, which means that Chrissy would have her own space but be able to socialise when she chose. The commissioners can invite tenders from service providers, and we can be part of the interview and selection process. Right now, this seems to be the best way forward but we will have to see what can be provided locally.

I had been feeling very frustrated over how slowly things seemed to be moving, & the feeling that I'd had to drive every step forward, as described in previous blogs - but there's nothing like getting round a table to thrash things out with someone taking a strong lead - in this case Chrissy's impressive new psychiatrist.


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Can children Grow out of Autism?

Chrissy, far left, aged 11, with siblings, Jamie, 9 and Alex, 6

Did you read the Daily Mail story 'Can some children simply 'grow out of autism?' http://www.dailymail.co.uk/health/article-2103940/Autism-Can-children-simply-grow-One-mother-tells-sons-life-transformed.html I was irritated and perplexed by it, not least because it wasn't made clear whether Josh, the nine-year old in the story, who was diagnosed at three, still had a diagnosis of autism!

I was interested to see a piece on the NHS Choices website describing the Mail's claim as 'misleading' and offering a 'false impression to the parents of children with autism:' http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx

I suspect most cases of a child 'growing out' of autism are in fact initial misdiagnosis, perhaps made too early before the picture becomes clearer. Other overlapping conditions, such as developmental delay, can cause similar symptoms and diagnostic overshadowing. I'm not convinced by the early interventions argument. Although early interventions can improve problems associated with autism they can't cure it. In our experience identifying signs of autism can be open to interpretation and its diagnostic criteria has widened over the years. Is it being diagnosed too readily these days?

Far from growing out of autism, Chrissy appeared to grow into it! Autism was first mentioned by her speech therapist when she was four, who said that although she had very few words that she used 'parrot-fashion' like someone with autism, she used imagination when playing with a doll. (I think she brushed the doll's hair or spoke to it.) Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism. In fact, a paediatrician told us: 'Your daughter can't be autistic because autistic children don't speak.'

As I've explained here before, years later when Chrissy was 22, her psychologist diagnosed her with a form of autism classified as 'active but odd,' a diagnosis confirmed by Lorna Wing, MD, Psychiatric Consultant at the National Autistic Society, who checked the psychologist's extensive report. In 2010, a consultant psychiatrist from The Maudsley Hopsital's Autism Assessment Clinic confirmed the presence of autism from an early age after reviewing old videos of Chrissy. He noted her odd postures and facial expressions, and how she flapped her hands in front of her face even at six.

Looking back, Chrissy's autistic traits have waxed and waned over the years. When she was little she often appeared to ignore us when we spoke to her, but we put it down to her severe glue ear, then everything was attributed to her developmental delay. She's always had obsessive/compulsive traits - lots of verbal repetition and switching lights on and off - but taken alone they didn't signify an autism spectrum disorder. Her severe outbursts weren't triggered by changes in routine or anything else that seemed particularly autistic, but her problems with small daily transitions appeared to get worse as she grew older.

Around the time the photo on here was taken, she was going through a phase of turning everything round the wrong way and upside down in her bedroom but that's long since passed. Her over-friendliness has confused the picture in the past but it's now on the wide spectrum of socially inappropriate behaviour that people with autism display. I remember watching Rain Man for the first time back in the eighties when it first came out. I enjoyed the film then but didn't associate Raymond's problems with Chrissy's but each time I've seen it since the parallels are so obvious I keep gasping: 'Oh my God - that's Chrissy!'

These days, Chrissy has frequent spells of very autistic jumping up and down, flapping and screeching but not all the time thank God! Maybe some of these behaviours were always there but less noticeable in a small person but I do think Chrissy is less able to adapt to her environment than when she was little. She was more flexible and reslient then. Maybe she had to be because we didn't know what was wrong and expected her to fit in with the rest of the family. As she grew bigger the tables slowly turned and she either grew into autism or we were no longer able to resist its awesome power!


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