Thursday, 25 August 2011

'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page - Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog -">

Friday, 19 August 2011

#Specialsaturday post - A Spooky Coincidence & an Aborted Visit

Because I’d had a microdiscectomy on Monday, I wondered if it was wise to have Chrissy home this weekend. After learning from her nurses today that she was relatively settled, I decided to give it a go. My younger daughter, Alex, would be here until their step-dad, Ian, came home, so if things kicked off...

What I hadn’t bargained for was things kicking off immediately Chrissy arrived. As soon as her nurses brought her home this afternoon, she started asking for dinner - then repeating obsessively that she wanted chips. It escalated too quickly for us to prevent her from taking to the ground. For the 2nd time in weeks she stripped off on our front drive & had a meltdown - the most violent I've seen since Xmas. Her nurses said they'd seen meltdowns like this on the ward since her Topiramate had been reduced. They’d obviously passed us by until now.

Spookily, Chrissy had a horrific looking abrasion on her back, exactly where mine is from surgery. As she scraped herself backwards along the gravel on our drive, stones & dirt stuck to the wound. Chrissy continued to thrash about, oblivious to the pain. I marvelled over how she’d never suffered a serious wound infection.

The high-intensity outburst must have lasted about an hour in total and I realised, with a sinking heart, that it would be far too ambitious for me to have her home in such an unpredictable state while I was still recovering from surgery. The three of us shielded Chrissy's nakedness from the busy road outside with a blanket & her coat, & waited it out. It faltered for seconds then started full force again complete with foot-biting, hair-pulling, skin pinching & finger twisting. If we got too near we got kicked & hit out at too. “Go away!!!” she shrieked.

A painter had been working at the back of our house & had now finished. I asked Alex to tell him to wait before he came round the front to his van. He could hear the ear-splitting screams clearly. "It's my sister - she's autistic," Alex explained. What else could she say?

Finally, for no obvious reason, Chrissy stopped, got up & was immediately docile & compliant, chatting away as if nothing had happened. She let us dress her over her dirt-covered body & take her inside to wash her hands. She then hovered excitedly as I packed up some food for her to take back with her. "What was all that about?" Alex asked. "Had a tantrum," Chrissy said matter-of-factly. I then settled her back in the car. As she smiled sweetly at me through the car window, I felt like I'd let her down, & had a little weep in Alex's arms.

Later, her nurse called to say that Chrissy was fine, & had remained settled. She also reminded me that, because Chrissy's concept of time is different to ours, she hadn't realised that her home visit had ended before it had begun. Chrissy was just happy that she'd been home to see mummy.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page - Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog -">

Sunday, 14 August 2011

A Strange Genetic Journey

I’ve just had a long conversation on Skype with a pleasant & well-informed Dutch guy whose wife & son carry the same chromosome deletion as Chrissy. He gave me a potted family history that struck a spooky chord. Although Chrissy’s deletion is de novo (maternal origin), our families share more than a coincidental number of characteristics.

The man's wife was born with a squint – the first sign of a possible genetic problem. I was too, & had corrective surgery. Her dad had one leg about 1½-2 inches shorter than the other, like me. Due to investigations into ongoing back problems, I’ve discovered that I also have subtle ‘skeletal abnormalities’ in my spine that are connected to the leg length discrepancy. There are other similarities in our family history that have made me want to explore this further - maybe with a research scientist who has a particular interest in 1q21.1 anomalies.

It makes me wonder how 'de novo' the effects of some of these rare chromosome disorders really are - or am I reading too much into a series of coincidences?

Friday, 12 August 2011

#Special Saturday Post - One Step Forward Two Steps Back

Last week I blogged about how much more fluent & alert chrissy was after the recent meds change. Unfortunately there's a downside. Her meltdowns have been more intense & she has ripped a toenail off. Chrissy's nurses can't move her to a safe area when she kicks off because - get this - she isn't under section. She gets herself in awkward spaces sometimes in meltdowns - she has jammed her foot under car seats & all sorts. She doesn't tolerate wound dressings so there is a risk of infection from her injuries. She is on antibiotics, which make her more irritable. It feels like we're going round in circles.

I know I keep banging on about Naltrexone but I wish there was some way another trial could be done with close monitoring of Chrissy's platelet count. It's the only intervention that has EVER stopped Chrissy's self-injurious behaviours. I've asked her medical team to get in touch with the doctor that prescribed Naltrexone 13 years ago for an objective report on its benefits. Medical notes from that time have been lost.

Chrissy's been a joy so far today. When this photo was taken she was in my office ordering meal ingredients online. She was saying what she wanted, ie sausages, baked beans etc., I was writing the word down & she was typing it out then adding it to the shopping basket to see a picture of the item on screen. We played online games then sat in my car listening to my ipod. I'm experimenting with different activities now Chrissy is more engagable because her nurses asked me what she most enjoys doing. I had been trying to find out what activities she was doing after becoming concerned about how she spent her time on the ward.

The need for someone like Chrissy to have a structured daily activity programme is so basic I'm baffled there doesn't appear to be anything in place already. The activities she enjoyed were documented when I completed admission forms & where is an OT in all this?

The hospital does have activities but they are in another area, which Chrissy is still too volatile to visit. Surely if you can't take the mountain to Mohammed.....? If she isn't kept occupied Chrissy will play up. Who wouldn't? I know she won't always be settled enough to partake in everything she's offered but a variety of activities should be available on the ward for when she is. It's a constant frustration that I have to keep on & on to get Chrissy's basic needs met.

This weekend I will continue to try & re-engage Chrissy with old activities that she'd lost interest in.

So far so good. We've had a wonderful time - & no meltdowns!

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. Please join the cause by joining the facebook page - Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday Reading and following the Special Saturday Blog -">

Friday, 5 August 2011

#Specialsaturday post - Meds Changes & getting my Daughter back

Chrissy’s doctors decided that Topiramate would be the first drug to be reviewed as it can worsen behaviour problems. It’s an anti-epilepsy drug, & was introduced several years ago to augment Epilim as Chrissy’s platelet count had dipped again - thought to be the result of her blood/Epilim levels being too high.

Back then, her neurologist said that Topiramate could cause cognitive side effects in some people, which is a particular concern in someone with learning disabilities.
However, seizure control improved & Chrissy’s platelets rose to normal levels with the lower Epilim dose. Side effects of Topiramate were subtle – Chrissy’s word-finding abilities faltered and her vocabulary shrank. The neurologist told us that these side-effects would probably be temporary and, over time, they did seem less obvious. Now though that Topiramate has been reduced it’s clear that the cognitive deficits were bigger than we’d thought.

More recently, since the Topiramate dose has been reduced by more than a third, Chrissy’s nurses and I have noticed that her vocabulary has expanded. she comes out with longer sentences and speaks more fluently. Last week she amazed me by saying ‘violin’ when she spotted a photo in the newspaper of a girl playing the instrument – I didn’t realise she knew what a violin was! On the way home, we got stuck in slow traffic. Chrissy said ‘We can’t move the trolley, can we mummy?’ then roared with laughter along with me as she realised she’d chosen an incongruous word.

This week Chrissy has been much more settled - it could be due to the meds changes or just one of her flukey 'perfect' days. She didn't wake us during the night and the two outbursts she had were short-lived and less intense than usual. (It's worth noting that the second outburst came out of the blue about 30 mins after being given her morning meds) She occupied herself for short spells & was more interested in what was going on around her. In the evening she came up to me & signed sleep, saying 'It's nearly time for Chrissy to go to bed.' This morning she got into bed with me for the best cuddle ever. She wrapped her arm around me & snuggled up to my back, then stayed perfectly still as we dozed off for about 30 mins. She also appears to have lost a bit of weight as her trousers were looser.

It’s early days but things are looking up. Am I finally starting to get my daughter back?

Pics - Chrissy quietly occupying herself (something she hasn't done for some time) & enjoying my new favourite homemade dessert - white chocolate mousse cake.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe.

Please join the cause by joining the facebook page -
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog -