Friday, 25 November 2011

Communication - a #SpecialSaturday post

Ineffectively met communication needs are triggers for challenging behaviours. We use communication strategies akin to those suggested by The Challenging Behaviour Foundation and Jill Bradshaw at the Tizard Centre, who both kindly allowed me to use their ideas in my book 'Bringing Up a Challenging Child at Home.'

Positive statements about what a child is going to do are much clearer than telling them what they're not going to do. For example, if we say to Chrissy 'You're not going in the car, she only hears 'Chrissy' and 'car,' and gets distressed when she realises she will have to walk. The message would have been clearer to her if we'd told her what she was going to do: "Chrissy, you're going for a walk."

Abstract concepts are particularly difficult to understand. If I ask Chrissy what she's been doing that day she can't tell me. If I ask her what colour top I'm wearing, particularly if I point to it, she answers me correctly. Her verbal communication is misleading. She is able to understand simple phrases and use learned 'parrot fashion' phrases in context - called social masking.

Much of Chrissy's communication is stream of consciousness observations. She was sitting next to me earlier and looking around the room. "It's a mirror," she observed. Then answered herself with: "It certainly is." She began to list what she saw. "It's a yellow flower and trainers and brown. Home. Brilliant." *Thumbs up sign* She then turned to Ian, my husband, and asked: "You fine Ian?" "Say yes!" *Sign for yes.*

Chrissy can follow simple instructions involving up to two named objects, ie 'put your cup on the table.' Her expressive communication is limited. She can’t tell you if she feels hot, cold, hungry or sad, and will use behaviour rather than words to express her emotional needs. We use a combination of verbal, basic Makaton sign language and symbol aids to help her move through her day. Using communication strategies are crucial to help her to stay calm and they have to be adapted according to her mood. It's draining when she repeats the same question endlessly, and demands a specfic response each time - but fantastically rewarding when she deviates from her learned phrases and makes a meaningful attempt to communicate with us.

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Friday, 18 November 2011

Special Saturday - What I'm thankful for

When Chrissy was little I spotted an ad in my local newspaper inviting mums of children with special needs to get together for regular meet-ups in each others' houses. I grabbed the opportunity like a lifeline and am still in touch with some of the parents I met there. Sadly, over the years some of our children have passed away. When I’m in despair about Chrissy I try to remember how lucky I am that I still have my child. Chrissy is physically healthier than many children with rare chromosome disorders.

We're also very fortunate to have supportive, loving family and friends - and Chrissy’s step-dad of 20 years is our rock.

Another thing I'm grateful for is to have the opportunity to write about what interests me and get paid for it – many of my magazine and newspaper stories are learning disability or health related.

I’m thankful that we weren't born in another time or place where Chrissy would have been ostracised and probably wouldn't have survived childhood. The excellent Channel 4 documentary 'The Queen's Hidden Cousins' was a stark reminder of how appallingly people with learning disabilities were treated until very recently.

I also have to remind myself how far we've come as a family. When Chrissy was five I separated from my three children's dad, & lost everything. To cut a long story very short, I ended up homeless & was terrified of getting stuck in a hostel with Chrissy disturbing everyone with her screaming episodes. Thankfully I was housed by the council just before I had to give up my marital home. I was getting no support with Chrissy from outside services & my wider family were also dealing with my dad's premature Alzheimer's. I had no idea that respite care and social workers existed to help families like ours - until I had a breakdown. It was the lowest time of my life.

Back then if I could have peeked into the future and seen how much better our lives are now it would have seemed like a fairytale!

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Saturday, 12 November 2011


Did anyone see the C4 documentary about children on antipsychotic drugs?
I’m so pleased this scandal is being highlighted. There have been several reports about over-use of antipsychotics in elderly dementia patients but not in children or people with learning disabilities. I blogged about this issue last October:
The story about the little boy on the C4 programme sent chills down my spine. He banged his head against hard surfaces and lay on the floor kicking & screaming – just like Chrissy. Antipsychotics were eventually prescribed when he was five but had no benefit. He was then seen by Professor Chris Oliver who suspected he had reflux (heartburn) but was unable to express physical pain due to his autism. When his reflux was treated his behaviour & self-injurious behaviours improved significantly.

Many children with 1q21.1 microdeletion have been diagnosed with reflux as babies. When I remember how Chrissy used to arch her back, and scream for ages in infancy, then head-bang as a toddler, I wonder if she had undiagnosed reflux. My blood still boils at how I was fobbed off when I sought medical help. I was convinced my child was suffering and in pain but these behaviours, & Chrissy’s prolific vomiting, were dismissed as being ‘normal’ for babies & I was treated as an over-anxious first-time mum.

After seeing the programme, I contacted Chrissy’s doctors & asked them to check for reflux again (sure I’ve done this before!), as it would be helpful to rule it out as a contributing factor in her self-injurious outbursts even now. It may be that they started off as a reaction to pain then became entrenched - but causes are probably more varied & complex. Explosive outbursts, sensory integration issues & poor impulse control are also part of the chromosome disorder. I would also like to discuss the plan for reviewing Quetiapine, an antipsychotic Chrissy is taking now. I am eager to see how she is on a gradual reduction programme as surely there should be good justification for her to be on an antipsychotic? I’m not aware of any, & it’s interesting that the investigation suggests there's no evidence that antipsychotics help self-injurious behaviour. Also, more chillingly, no one knows what harm they do over time – particularly to the developing brain of a child. I’ve seen how they affect every part of the body and have frequently expressed my deep unease at their effects on Chrissy. She was prescribed antipsychotics at 10 and different ones were tried until she was 14 and in such a state that she ended up in hospital where her whole medication regime was overhauled. When she had the platelet reaction six years ago she was put back on antipsychotics – newer ones that allegedly cause less side-effects – but I remain unconvinced that the risk-benefit balance is in Chrissy’s favour.

Here’s a list of the side-effects of Risperidone, the antipsychotic Chrissy was on prior to Quetiapine, as reported to her learning disability psychiatrist in 2008:
• Parkinsonian tremor in right hand, and, more mildly, tremor in head and mouth.
• Noisy breathing, even when sitting quietly.
• Frequent leaning to one side – Pisa Syndrome?
• Poor balance.
• Decreased fine motor co-ordination – problems eating neatly, particularly using a knife and fork, which Chrissy always used to be able to manage with no problems.
• Decreased gross motor co-ordination. Problems climbing into and out of unfamiliar things, like fairground rides, which she would have once managed, albeit with support.
• Increased agitation and shorter concentration span.
• Drooling from mouth. (Non-existent normally)
• Frequent urination and loss of bladder control.
• Reduced cognitive ability – less aware of surroundings and takes more time to process information.
• Weight gain and obsession with eating.

My concerns were initially dismissed, ludicrously, as being ‘part of Chrissy’ but eventually the psychiatrist agreed to reduce the antipsychotic dose, which diminished the side-effects. However, without the doping effect, many self-injurious, challenging behaviours returned, hence the change to Quetiapine. We haven’t seen the same side-effects, just different & even scarier ones. The worst of them settled over time when the dose was tweaked but Chrissy is now obese & still has self-injurious outbursts.

Of course, there are no drugs to ‘cure’ conditions like autism. You can adapt surroundings and use strategies to help someone cope better & improve their functioning. However in certain circumstances medication is necessary, not as a chemical cosh to make carers’ jobs easier, but to improve quality of life by treating symptoms such as extreme anxiety or a compulsion to self-injure. I don’t know why antipsychotics are so widely used in place of other medications to treat such symptoms. Have psychiatrists become too complacent? Is it a case of better the devil you know? Any medications that affect brain functioning in the way antipsychotics do should only be prescribed as a last resort and with strong justification. They should also be subject to careful monitoring.

Surely these are basic medical principles - so what's going wrong?

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Saturday, 5 November 2011

#Special Saturday - Christmas Gifts

Now Chrissy is engaging more with activities I am choosing Xmas gifts with particular care. She can be destructive so needs close supervision with anything breakable, like her laptop & portable DVD player. I have bought her the Snowman DVD again, which she loves. I buy at least one a year because it wears out or gets broken. Chrissy plays it over & over, & never tires of it. This year I'm trying out DVDs that have similar animations - Father Xmas & The Bear. Chrissy loves anything Xmas-themed & DVDs with lots of singing, dancing & colour.

Greatest hits include:
Makaton Nursery Rhymes hosted by Dave Benson Phillips; portable keyboard; a colourful 'speaking' parrot & Teddy Ruxpin - another speaking toy; a personalised video that features your child as the star in a cartoon; a small Xmas tree that dances to music; pop-up books with sounds; Vtech toy laptop; Leapfrog reading system; portable DVD player; CDroms like Reader Rabbit; bubbles; a brand new Argos catalogue!

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