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

Living with a Rare Chromosome Disorder

Well....Chrissy's clinicians have deemed her ready for discharge now, just as I was beginning to wonder whether I was kidding myself to think that her behaviour and epilepsy would ever be stable again.

Since the last meds change several weeks ago, every day has been a sunshine day. We're almost at the optimum therapeutic dose of Zonisamide, at which point the stop-gap antiepileptic, Clobazam, will gradually be withdrawn.

It's heartwarming to see 'no seizures' and 'no challenging behaviours' recorded each day in Chrissy's ward/home report. The episodes of inconsolable distress have vanished. Music from her Ipad makes her dance in her chair and her cheeky chuckles ring out around the house. I took the photo above when we were sitting in my car and she had just reached across to stroke my arm lovingly. Simple gestures like that mean the world to me as Chrissy doesn't often instigate affection.

She is having a great time exploring the new ipad she got for her 29th birthday, doing puzzles, building snowmen and causing mayhem in her virtual home. At first she used different fingers and even changed hands to manipulate objects around the screen - but she's learning fast. She has relatively good manual dexterity and loves anything to do with computers.

On our morning walk to the village shop, Chrissy pointed out sights that interested her, including a metal arch over someone’s gate. 'Rainbow!' she cooed, then stood admiring it for a while. I was enchanted.

Chrissy admiring the 'rainbow'
Chrissy still struggles with transitions and needs all our attention but she's content and responsive, which makes our job much more rewarding. She wants to be out there living her life now. The unit do their best, and do take her out, but not as often as she would like. This morning when I asked her to take her medication, she replied: 'When the night staff come!' It's definitely time for her to move on but we've had to involve solicitors to focus commissioners' minds as things were dragging on. This has been the case with each of Chrissy's major transitions over the past few years. Legal aid cuts are brutal but, in this instance, Chrissy's solicitors were able to demonstrate that we had exhausted every other avenue and only turned to them as a last resort. She will, however, have to pay a contribution.

Chrissy's housing options are still unclear but we are finding a way through the maze. One of the biggest barriers we faced was accessing social housing. I was advised to bid on local homes by Chrissy's commissioners but after several bizarre 'admin errors,' a housing officer said that Chrissy wasn't 'well-placed' for general purpose social housing as she was 'unlikely to be thrown out onto the street.' If someone without a learning disability is at the point of discharge from hospital they would be moved to a priority banding..... The very few adapted properties that I've seen on the website are for the elderly only and, although Chrissy moves slowly and cautiously, she doesn't need adaptations for limited mobility. I then learned that there was a supported living panel at our local CC, which we had not been told about. Our local council's policy documents state that social housing for vulnerable adults and those with a learning disability are their priority. This hasn't been our experience and we've put in a Freedom of Information request to identify how many people with a learning disability have been offered social housing in the CC's area over the past year.

We've also made a mortgage application on Chrissy's behalf, which would be paid for from her benefits, and we're still exploring shared ownership schemes through registered social landlords. I had been left to deal with all this confusing information but now I've had enough and forward emails to the commissioners to deal with.

Chrissy finally has a social worker! Perhaps the long-awaited community care assessment will be done now. She must surely benefit from Social Services and NHS commissioners working together but why has it taken so long when the planning process has already taken place?

So, I'm still fighting to get Chrissy an appropriate care and housing package in the community, but the sting has gone out of it because she is so settled and content. This stability was only achieved by her spending time in an assessment and treatment unit and, in our view, the Government's knee-jerk reaction after Winterbourne to close down such units is misguided and dangerous. There's no doubt that big changes needed to be made, not least for assessment and treatment units to live up to their name - to assess and treat their patients - but we have much to thank Chrissy's unit for. They've brought her back to us.

I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger

Christmas 2012

This photo sums up Christmas Day for Chrissy. I've had a stinking cold for over two weeks now & dreaded Chrissy getting it as I knew she'd find it hard to cope. She can't blow her nose or deal with all the discomfort.

On Saturday she was complaining 'I feel sick' and by Sunday her nose was streaming. She was also lashing out at us randomly. One minute she was sitting quite happily the next taking a swipe at whoever was closest. At one stage she leaned in towards me. I waited expectantly for a kiss but Ian suddenly pulled her back. 'Her teeth were bared - she was going to bite you,' he said. The level and nature of her aggression is out of character & it's so random. Is it a side-effect of Keppra, the new antiepileptic that was introduced last week, or is it because she feels such discomfort from her cold?

On Christmas Day she was very squawky and unsettled - we were walking on eggshells from the off. We were spending the day with my sister, Sarah, & her family in Bovingdon, Herts, an hour-and-a-half's drive away. Ian drove Chrissy and I kept Alex company in her car as she'd planned to go off afterwards to see friends in the area. Halfway there, I got a call from Ian to say Chrissy had been undoing her seat belt & trying to open the car door on the M25. We hadn't seen those risky behaviours in the car for some time.

It didn't bode well.

My sister and her family did a sterling job entertaining us for Christmas dinner, considering that they too, had been ill with colds. Like us, they had considered cancelling but we all made a valiant effort to eat, drink & be merry - as you do!

We'd last joined them there for Christmas in 2010, when Chrissy had spent most of the day in various states of undress & distress on the kitchen floor. Although, two years on, it wasn't that bad, neither was it quite the rosy vision I'd pictured - of Chrissy mingling happily with her cousins & making us laugh with her quirky sayings & antics.....

Instead, Chrissy alternated between sprawling half-comatose on the sofa, moaning & screeching, swearing like a navvy, farting like a trooper, bellowing Diva-like demands, & randomly slapping Ian in the face. She refused to go to bed &, despite looking like death, still managed to stuff her face.

At the end of the day, I was feeling pretty rough myself & longed for my own bed. We were supposed to be staying at Chrissy's nana's nearby but, as I hadn't been drinking, I decided to dose myself & Chrissy up with Paracetamol & drive home.

Chrissy had other ideas.

She lay down in the far corner of the kitchen & refused to budge for a good hour or so. Ian & I tried shameless bribery with such irresistible treats as 'banana-in-a-bag-tied-with-a-bow' but she wasn't having any of it, & screamed 'go away!' whenever we came near. In the end she got up when she was good and ready. Then, because she's been struggling so much with transitions - another behaviour that's recently returned with a vengeance - we had to woo her with every cunning strategy we could muster into the car. There were huge sighs of relief all round when we finally belted her up.

During the journey home she didn't utter a word other than to ask for tissues during a sneezing fit. When we got home she kicked off as soon as we walked in the door. Cushions and shoes were thrown across the kitchen, then eventually Ian got her up to her bedroom & half into her pyjamas, when she called a halt to proceedings & threw herself onto her bed, biting & twisting her hands. After a while, I managed to calm her down enough to persuade her to use the toilet. She got halfway there then stopped & sneezed violently. 'I need a bath mummy,' she declared as a wet patch sprouted in her pyjamas.

When I finally got her to bed she insisted that her pillows be turned over several times & her blanket just so but as soon as I turned the light out & left the room there was silence. She slept soundly through the night and beyond.

I felt sad for Chrissy that my sister's family weren't seeing her at her best again. I also felt uncomfortable about inflicting all this on other people on such a special day. My sister's elderly in-laws were there too & it didn't seem fair on them. Everyone was kind & couldn't do enough to make us welcome but I so wished things could be different, just for that day. We have such high expectations of Christmas don't we?

On the drive up I'd spoken to Alex about her mixed feelings towards Chrissy - all the 'why us' moments we grapple with at times, the anger that we're unable to express because Chrissy can't help it. I love her unconditionally because I'm her mum - I make choices as to when she comes home and how her behaviours are managed. Her siblings are relatively powerless. The impact a disabled child with challenging behaviour has on a family can be corrosive & divisive. Sometimes in trying to hold my family together and do my best for everyone I've felt like I'm clinging to a sinking ship but I think we're still afloat....just!


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

Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


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