Saturday, 28 April 2012

Hidden pain: Self-injury and people with Learning Disabilities

Self-injurious behaviour (SIB) in people with learning disabilities is one of the most distressing and challenging behaviours that families, carers and the person with the SIB themselves have to cope with. In our experience, SIB is poorly understood by most medical professionals, and can take many forms, including, head banging, hair pulling, hand biting, bending fingers back, ripping off finger and toenails, and eye and genital gouging. Causes are complex and usual behavioural intervention approaches, such as rewarding good behaviour, may be ineffective. People with SIB can present big challenges to services and their families. Support workers and parents report emotions including disgust, despair, helplessness, shock, anger and hopelessness. The SIB itself may be severe – Chrissy once fractured her heel banging it on the floor and I know of other individuals who have lost their sight through SIB.

An increased risk of SIB is associated with sensory deficits, poor expressive language, autism, severe disabilities, poor mobility and specific genetic syndromes, whereby it's thought to be related to underlying brain abnormality. People across the learning disability spectrum are at a higher risk than the general population of engaging in SIB at some point in their lives, ie during times of stress, change or illness. Around 8-15% of people with learning disabilities living in hospitals self-injure and, indeed, this may be the reason for their admission. About 3-12% of children with learning disabilities and about 3% of adults, living in the community, show self-injury. (Figs taken from The Challenging Behaviour Foundation's excellent information sheet on SIB)

Reasons for SIB are varied. It may simply be the only way the person has to communicate frustration or to control the environment. Physical causes, such as pain, illness and seizure activity should be ruled out where possible. SIB may be an attempt to gain sensory input due to a high pain tolerance or conversely due to sensory overload, such as head banging to block out a distressing noise. SIB may also be expressions of common autism traits such as obsessions and repetitive behaviours, or an underlying mental health issue. As with self-harm in people that don’t have a learning disability, SIB can also be due to neglect, abuse, under-stimulation and inadequacies in the environment.

Early recognition and intervention may be effective before the SIB becomes entrenched, especially where there is no identifiable biological basis for the self-injury. Seemingly harmless repetitive, stereo-typical behaviour may be a pre-cursor to SIB. Head banging that started as a form of sensory stimulation or due to earache in a young child may develop into a way of avoiding demands or expressing discomfort. Parents and teachers may unwittingly ‘shape it up’ with their responses.

Once possible causes and functions have been investigated, treatment interventions fall broadly into behavioural and medical. Physical interventions or restraint are only used as a last resort, and may cause the SIB to escalae. Research over the past two decades suggests that certain types of self-injury may be part of a tic disorder or due to neuro-chemical differences. There may be Dopamine or Seratonin imbalances, or some people with learning disabilities may have raised beta-endorphin levels which increase their pain threshold. It has always been a mystery why some people with chronic SIB don’t seem to feel pain. SIB can release the body’s natural opiates to produce an addictive ‘high’ which can reinforce the behaviour (so-called opioid excess theory). Only one type of medication has been consistently found to help in reducing this type of self-injury – Naltrexone – a medication that's also used for people without learning disabilities who have drug and alcohol addictions. Naltrexone has to be monitored closely and doesn’t work for everyone with SIB but it effectively blocks the opiates, thereby removing the usual addictive responses to self-injury.

I've mentioned before on here how Naltrexone helped Chrissy & why it had to be withdrawn. It stopped her SIB outbursts - and even mild skin-picking - for seven years. Antipsychotics have consistently made her SIB worse but it's been a struggle to get some of her previous learning disability psychiatrists to take this on board for some reason. In desperation, after a recent spate of more intense SIB cycles, I posted a video of Chrissy self-injuring on a closed 1q21.1 microdeltion group, to see if anyone else had seen anything similar in their child. From what parents have reported back so far, children with this deletion and associated challenging behaviour are more likely to show aggression to others than themselves. Although some do self-injure it seems to be a passing phase that they grow out of. One parent said that when her daughter approached her she never knew if she was going to hug or or hit her. I'm not sure which is worse - seeing your child self-injure or being afraid that they may hurt you. Chrissy has lashed out but usually inadvertently, ie if I get too close while she's in a very intense phase of the cycle. When she was eight she threw a book that hit a teacher in the mouth - she lost her front was quite horrific but not deliberate. Chrissy doesn't aim objects at people; she just throws randomly to express extreme emotions.

Triggers are sometimes obvious, for instance when Chrissy doesn't get her own way, but they are often impossible to identify, especially when things kick off while she's in an angelic mood doing something she loves. Particularly mystifying are intense cycles lasting days - one occurred recently soon after Chrissy went on Pregablin, a new anti-epileptic. We're not sure whether it caused another cycle or if it was just coincidence but it's now been withdrawn as Chrissy's seizure frequency increased too. During these cycles, Chrissy struggles to engage in activities she normally enjoys and is very unsettled at night as well. Yesterday she said 'I feel sick' while she was kicking off. She sometimes does this before a seizure so it's something else to flag up to her doctors. We can minimise triggers in her environment and use distractions but we can't stop these SIB episodes once they start. She seems to get stuck in them and we have to let the cycles run their course. I've explained on here about the devastating impact they have on Chrissy's life and my long search for answers. Over the years Chrissy's psychiatrists and psychologists have put different theories put forward, including autistic crisis, cyclic depression, psychosis, the 'wrong' environment. It's quite possible that her SIB has been triggered by all four at different times in her life but these theories haven't resulted in Chrissy regaining anything like the quality of life she had on Naltrexone. Medical professionals are working together to help Chrissy and I heard yesterday that a referral to a specialist in movement and tic disorders has been made. Things are moving forward.....

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

Saturday, 21 April 2012

Stress on the Carer

Chrissy's sister, Alex, doing the 'Chrissy clap' on Chrissy's 28th birthday last week

Most of it is in my book so why not own up on here? I had what can only be termed a 'nervous breakdown' when I was 29.

I became depressed because I could see no light at the end of the tunnel. After Chrissy, we'd gone on to have two more children, not realising how severe Chrissy's problems would turn out to be. I thought she'd be a slow learner but would grow out of the most challenging behaviours as she matured. Instead they got more difficult to manage as she grew bigger. I'd attributed her learning disability to a long difficult labour, and had never considered the possibliity that subsequent children could be affected similarly. In fact, although the cause of Chrissy's difficulties is genetic, it wasn't inherited from her dad or I. As in about 50% of children born with 1q21.1 microdeletion, it happened spontaneously. A one-off.

My marriage broke up when Alex was a baby. I instigated it for reasons I can't elaborate on because my ex-husband has since died and it wouldn't be fair on his children or family. I touch on some of it in my book, but, as in most marriage break-ups, there's a huge, complicated untold story behind it.

It left us in negative equity, and I lost my home and my car, as well as my sanity for a while. We were officially homeless and I was terrified that we'd end up in a hostel, and Chrissy would keep everyone awake with her outbursts. Mum was otherwise engaged as a carer with my dad, who had premature dementia, but she did what she could. There was no other family living nearby and I didn't know where to turn. I knew nothing about respite or social workers back then. I used to cook Sunday roasts for friends in return for help with the children because on my own I struggled to cope. All three were poor sleepers and when Chrissy kicked off the younger two inevitably got some of the fall-out. I felt that I had no choice but to split my children up in order to survive as a family. My ex-husband took one of them to live with him - and that's another story best left untold....

I lost my appetite, and lived on cigarettes and coffee. My weight plummeted. As an escape mechanism I tried to sleep whenever I could. My tears often started unbidden when I was out in public - I thought they'd never stop sometimes. I fantasised about driving into walls. I felt ashamed - I had to pull myself together for the children's sakes - but I didn't know how. Eventually, I saw a sympathetic GP and told her I couldn't understand why I kept crying. She reached out sympathetically to touch my knee and I broke down in front of her. She diagnosed reactive depression and said she would be surprised if, after all I'd been through, I hadn't reacted by becoming depressed. I was put on tablets. I don't know whether to attribute my depression lifting two months later to the anti-depressants or the end of my uncertainties about where we'd live. The compact three-bedroomed council house that was to be our home for the next decade was in a derelict state - the last tenant had been an old lady, who'd died there - but I can vividly recall my relief at having somewhere that was mine, that no one could take away. A friend who came along with me to view it before I moved in told me later that she'd cried for us afterwards because it was so awful, especially compared to the lovely spacious detached home we'd had to give up.

My breakdown brought us under the radar of the local children's learning disability social services team, and we were allocated respite and transport to take Chrissy to school. It also made me stronger - I learned to be more proactive to prevent anything like this happening again. Over the years I worked with child psychologists and Chrissy's school to develop a behavioural management plan to deal with her behaviour. I felt altogether less helpless in the face of adversity. By then, I'd met Ian, my second husband, who proved to be our rock.

While I've never sunk to such depths of black despair again, life with a child like Chrissy has been a roller-coaster ride. Not knowing what was wrong took its toll as I searched for answers that kept ending in blind alleys - and the cause of Chrissy's horrendous cyclic self-injurious outbursts remains a mystery. I've had to hold her down while doctors injected her with sedatives and call ambulances because she's in torment from something that's made her scream and thrash around for hours. Life with Chrissy has been peppered with terrifying medical emergencies and debilitating fights for services. My sadness and guilt at having to leave her in the hands of adult residential services because I can't cope never goes away.

It's hard to say what effect all this has had on me over the years. Health problems I've got may well have occurred anyway. How do you separate such things? I've had back problems ever since I've had Chrissy, which hefting her around hasn't helped - but I have skeletal anomalies in my spine. I have Sjogren's, an autoimmune disorder. It gives me occasional flare-ups that floor me for a couple of days at a time but I've got it mildly compared to some. Could stress have caused my body to attack itself or am I just like thousands of others who get these nasties during middle-age? I've got an embarrassingly bad memory, explode over things that shouldn't matter and get over-anxious about things that may never happen but don't lots of middle-aged women? I get moments of self-pity when I think 'why us?' but then why not us? Life brings challenges for everyone.

I cope by sharing experiences with other parents in the same boat, while having a separate life and interests where I'm not defined only as Chrissy's mum. Things like playing the piano (I'm having lessons) and listening to my ipod in the car help me switch off and release tension. Black humour helps too - you have to laugh when your adult toddler runs riot in a pub because the coke bottle lid is different to her usual one, or shrieks 'f~*@ it!' in public places. We've had so many occasions like that it takes an awful lot to embarrass me these days! And I'm always up for a good party. Nothing like letting your hair down to forget all your troubles and recharge your batteries.

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

Thursday, 12 April 2012

High Days & Holidays

Me on holiday in Spain with Chrissy aged two

I’m back! Haven’t blogged for a while because I've been in South Africa celebrating my husband, Ian’s, 50th birthday.

Holidays always invoke mixed emotions. I enjoy the break and new experiences but feel guilty about leaving Chrissy. At each new place we visit I wonder 'what would Chrissy think of this? How would she cope?' Does that sound silly? After all, she’s 28, well past the age when children stop holidaying with their parents. The difficulty is that she understands enough to know a long period has gone by without a visit home but doesn’t understand why. There’s no doubt that she misses us - she gets upset if more than a week goes by without a visit home.

In previous blogs I’ve mentioned challenges that parents of children with autism etc face with special occasions like Christmas. They’re the same with holidays but worse!

I first took Chrissy on holiday when she was about 14 months old. We spent a week in the Lake District, where I’d lived as a child, with my parents. We were coming to terms with the fact that my dad, still only in his fifties, was in the early stages of dementia and there was ‘something wrong’ with Chrissy. She had just been prescribed Phenytoin for newly diagnosed epilepsy and all she seemed to do was sleep. Apart from our sadness over the unfolding double tragedy in our family, our holiday activities were similar to anyone else's with a young child.

Our next holiday was about a year later, when Chrissy, was two (photo). We were staying at a friend's Spanish villa. The flight out there was particularly memorable. Chrissy screamed & thrashed about non-stop to the point where a sympathetic fellow passenger offered to hold her so I could eat and drink something. Chrissy promptly threw up in her lap. I still blush when I recall the sight of our good Samaritan at the baggage carousel with vomit stains on her dress. There was more drama on the drive up to the villa, which was high in the mountains. Chrissy seemed to be in pain &, looking back, I realise it was probably caused by her glue ear. She's had countless ruptured ear drums and infections, and the altitude changes must have been agonising for her. I was so uninformed back then about her medical issues.

On another holiday to Cyprus when she was five or six, Chrissy ended up in hospital because she had a run of seizures. I stayed with her while her dad cared for her brother, Jamie. The hospital didn't allow children to visit, which made things very difficult. I remember glimpsing disabled adult patients through cracks in doors away from the main wards. My heart went out to them and their families being treated like pariahs. I had no idea then that Chrissy would end up like that.

As Chrissy grew bigger, her behaviour challenged us more than her health. When she was about eight she was allocated a week’s respite during the school summer holidays. We decided to use it to take Jamie and Alex, my other two children, to a camping site in the south of France. When I told a friend that we were going away without Chrissy, she was shocked. “She’s your flesh and blood. How can you even think about going without her?” she gasped. Ian didn’t mince his words in justifying our decision. We needed a break and previous holidays with Chrissy had been disastrous. There was no point in putting Chrissy or ourselves through what would be another ordeal. She’d had several shorter spells in respite and enjoyed it there.

We next took Chrissy abroad (on the Eurostar) when she was 14 and in the honeymoon period of the life-transforming new drugs regime. Our trip to Disneyland, Paris with extended family was a huge success, which we tried to repeat with another trip in her twenties but she’d just started on Risperidone then. She spent much of the holiday in a very peculiar trance-like state where she alternated between indifference to the Disney characters that tried to engage with her and sobbing inconsolably. It was bitterly cold there and she kept trying to take her gloves, coat and hat off. Her senses seemed completely out of kilter.

Since the enforced drug changes in Chrissy’s early twenties, she’s been too unstable to take out anywhere, let alone on holiday. It’s always been a wrench to leave her behind while we go away, and I was reluctant to go at all, and then for no more than a week. During recent years my husband has pressed me to go further afield for a longer period. He has a very demanding, high pressure job and wanted us to see the world while we were still young enough to do some adventurous stuff. It’s enough that he took on my three children from a previous marriage as his own – the least I could do was compromise on the holiday issue. Four years ago we took our youngest child, Alex, to Peru for three weeks, which involved spending a week on the Amazon. Only emergency calls could get through and I was unable to check how Chrissy was. Talk about cold turkey!

When we got back I learned that Chrissy had been very unsettled at one point with increased self-injurious behaviour but there was nothing I could have done and, to be honest, ignorance was bliss. We really threw ourselves into the spirit of that holiday and I astonished myself by climbing Machu Picchu ‘Old Mountain,’ something I never thought I'd be fit enough to do. I returned home with more confidence and renewed energy to deal with the challenges I faced with Chrissy.

The dilemma of whether to take a disabled child with severe behavioural difficulties on holiday can cause rifts between parents. I wrote a feature for Woman’s Realm Magazine about a couple that couldn’t agree whether to take their son, who has autism and moderate-severe learning disabilities, on holiday with their three younger children. I could see both sides. His mum felt very emotional and guilty, as I do, about leaving her child behind but his dad felt that they couldn’t have a proper break if they took him. Also, he made the point that the child himself disliked the unpredictability and routine changes involved in holidays. Also, as the lad grew bigger it was the dad who had to chase him if he ran off or physically restrain him if he kicked off!

It’s a contentious issue and I’d welcome comments from other parents on how they cope – or are family holidays a thing of the past for you since you’ve had a disabled child?

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