Wednesday, 26 December 2012

Christmas 2012 - Navigating through Stormy Waters

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

Sunday, 16 December 2012

Should Parents Intervene in their Child's Medical Treatment?

Yesterday, with typical hand-clasp posture, hat on indoors and sleeves rolled up

This question ignited fierce debate when Sally Roberts ran away with her 7-year old son to prevent his radiotherapy cancer treatment for a brain tumour.

However, I believe that Sally Roberts deserves sympathy, not condemnation, especially by ill-informed people online who hadn’t read the whole story. She is obviously frightened & has her son's best interest at heart, even if she may be misguided. Having your child’s life under threat is the most terrifying prospect ever and I can see how it could temporarily unbalance your mind.

I completely understand the need for the courts to step in - parents should have a say in their children's treatment but not necessarily the final decision. I’ve often felt like running away with Chrissy to take charge of her treatment but common sense has prevailed and enabled me to take the longer view. Such an impulsive act could lose me my Deputyship, which means that I’m appointed by the courts to make decisions on Chrissy’s behalf as she lacks capacity to manage her own welfare and affairs. Ultimately, this could leave me powerless to protect her interests in future.

Having said that, I have at times taken a very strong stance over Chrissy’s medical treatment, and it has led to clashes. I know my child’s long, complex medical history better than anyone and always fight her corner if I disagree with her doctors.

I know all too well the feelings of helplessness & desperation when you fear that your child's medical treatment could be doing them more harm than good. Primal instincts take over - I made a rash decision on holiday to stop a treatment that I felt was causing ill-effects – Chrissy's antipsychotic. I held my hands up afterwards & acknowledged that it was a step too far but there had been so many bureaucratic delays over starting the process that I felt desperate. Although her clinicians put her back on the antipsychotic when she returned to the assessment and treatment unit, my actions had the desired effect - although I hadn't done it from a conscious desire to manipulate events. A tapered withdrawal process was started immediately.

Since then, Chrissy has gone from strength to strength. Re-reading my blog post from that holiday, I see that I said Chrissy’s mobility had declined with age – although she’s only 28. I was wrong. Now her meds are sorted out her agility has improved. I’m not sure why, as she's still overweight - maybe she felt dizzy or had vertigo? Her life has been transformed by these long-awaited medication changes. The high levels of self-injury and disrobing that effectively imprisoned her have now reduced so significantly that she is able to go out and about again routinely. As I write this, Chrissy is sitting contentedly next to me turning the pages of her Argos catalogue and pointing out different pictures she likes. Her concentration span and focus have improved no end and she can amuse herself quietly for long periods of time now. Her quirky personality and sense of humour has returned. She laughs, dances and sings again, and notices everything that goes on around her. Last time I blogged about how she was settled enough to cope with a four-hour drive up to Staffordshire to visit her grandma for the first time in around four years.

Chrissy still has her ups and downs, and always will, and her epilepsy is a huge concern, but she is now back to her old self. I can’t emphasise enough how changed she was while on inappropriate medication. She rejected activities that she previously enjoyed, was too unsettled and unfocused to engage in anything for any length of time, and her cognitive abilities and vocabulary had shrunk along with her quality of life. She lost her personality. We thought we had lost her.

What on earth was it like for her? The only way she could express her torment was through violent self-injurious behaviour. There were times that she missed out on weekly visits home because she was so agitated and confused that she didn’t know what was going on, and I couldn’t even get her into my car. This was completely out of character - she looks forward to her home visits all week. Her younger sister even questioned whether her life was worth living at one point because she was suffering such a continual high level of distress. Behaviours included ripping her hair out of her head, leaving her partially bald, breaking her heel by banging it on the floor, gouging and biting her skin until it bled, and sustaining a multitude of bruises, swellings and lacerations all over her body and face through punching, pinching and throwing herself around. She also lashed out at other people, which she only does on occasion when extremely distressed.

Now her hair has grown back and her body is rarely marked from self-injury. Her face has lost its haunted look.

Chrissy can’t express how she feels, and Ian and I often speculate on how she must have felt when she was so distressed on inappropriate medication. There’s nothing worse than watching your child suffer and until you are in a situation like Sally Roberts’s you can’t say what you would or wouldn't do.

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

Wednesday, 5 December 2012

Catching up & Moving on

The last time we'd taken Chrissy to her step-nan's (pictured) was over five years ago. The four-hour journey had been gruelling with a distraught Chrissy repeatedly undoing her seat belt, and screaming, self-injuring and wedging herself into tight spaces.

Last weekend's journey was very different. Apart from the odd burst of repetitive questions, Chrissy settled down in the front seat next to Ian and was content to watch the world go by. When we stopped off at a service station she never once tried to escape to explore the numerous glittering attractions we saw en route to the Ladies. Unheard of!

When we arrived at her nan's Chrissy rushed inside to greet her, grinning from ear to ear. 'I never thought we'd see her like this again,' her nan said, all teary eyed. 'I thought we'd lost her.'

I welled up too as I watched Chrissy taking everything in. She had seen her nan earlier this year when she'd come to stay with us, and she knew who she was. I'm not sure that she recognised the house though. Then her face lit up again as she spotted her sister, Alex, who had come down from Manchester. We hadn't told Chrissy she'd be there or she would have obsessed about it on the way up.

Chrissy is always thrilled to see her siblings. Normally, unless she sees someone regularly she struggles to remember them but she always knows who her younger brother, Jamie, and little sister, Alex, are. The evening went well but Chrissy ate voraciously. We are always trying to distract her and discourage her from overeating but at times, she constantly demands food.

Her happy mood gradually dissipated on Saturday. This often happens after she's been particularly bingey. Something kept coming over her - we never know what - but she suddenly becomes distressed for no discernible reason, and starts screaming, twisting her hands, bending her fingers back and pulling her hair, then she snaps out of it and gives us a beaming smile.

Another mum posted something on a forum that reminded me how difficult things once were for us, and for many other parents of children that have this rare disorder:

''My son's behavioural issues/outbursts/tantrums have escalated so intensely that we don't know what to do anymore. When he gets upset, which is often and for no reason, he is un-calmable. He is incapable of self-soothing, and literally needs me to physically calm him down, rubbing him, deep breathing - sometimes yelling to snap him out of his ritualistic obsessing. It's more than I can take right now and I'm not sure what to do. He woke last night with such emotionally disturbing tantrums and terrors that both my husband and I were in tears......''

Although this desperate mum's description propelled me back to dark times, it also made me realise how far we've come. Chrissy's behaviour will always present challenges to people that look after her but we attribute recent improvements to her revised meds regime. She's still on Prozac but off all antipsychotics. Her behavioural outbursts rarely escalate, her overall mood is much happier, and we can take her out. She continues to be far more alert and engaged in what's going on around her. Her hilarious, stream-of-consciousness observations are back too, giving away all our best-kept secrets! 'Nanny blue jacket, grey hair!' 'You don't like dogs do you mummy?' she declared to my mortification as her nan's adored border collie entered the room. 'Ian farts sometimes,' was another random pearler she uttered loudly and clearly in front of his family. She also threw in a few 'bastard shits' and a couple of 'fucks' for good measure.

The visit was a success, despite Chrissy's changeable mood, and seeing her pleasure at being around loved ones has helped me to re-evaluate what she needs from a supported living placement. I yearn with every fibre of my being to keep her close by where I can protect her and see her more often - but it's not about my needs as a mum - it has to be about what's best for Chrissy. Her psychiatrist and a housing adviser suggested that she'd be better off living in a nearby town. Good public transport links and local amenities would give her more choice of staff and activities, and she wouldn't keep bumping into me while she was out and about. I believe the benefits of living in a community that she's familiar with far outweigh the benefits that are being advocated for her living elsewhere. Chrissy would lead a more fulfilled life if her home was in a familiar place where she has connections to the local community and people that love and care about her. To gain these connections in an unfamiliar place would be a very forced and difficult process for someone that needs 24-hour care and functions at the level of a toddler. Are we in danger of using the 'one size fits all' approach to supported living that is all too often the reason why residential placements break down?

And if it is agreed that Chrissy should live in our village, will government policies dictate otherwise? The current housing and support system is failing many people with a learning disability, who face a lack of housing options due to welfare reforms and budget cuts. Housing benefit caps make rent unaffordable and, although Chrissy can apply for exemption, many private landlords won't accept tenants on benefits, let alone one with a learning disability. Social housing is also inaccessible in some rural areas with specific local connection eligibility criteria. Chrissy wasn't considered for the newly built affordable housing in the village because other applicants that have lived and worked here for years have a stronger local connection. Our only hope is that a suitable, reasonably priced house will come up for sale and a registered landlord will agree to purchase it, and rent it out to Chrissy, possibly in a shared ownership capacity. Struggling to unravel all the supported living red tape makes you wonder if it's delivering on its promise of offering more choice, control and inclusion.

Here, an excellent report by Mencap explores the barriers to successful independent living arrangements, and suggests a national strategy for housing people with a learning disability.

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