Monday, 27 June 2011

Perspective on Challenging Behaviours

I came across an article on tantrums in children the other day.  It’s on the website:
It described tantrums as being “a young child’s way of physically expressing feeling such as anger, frustration, hurt, and being upset.”  

And this has always been the way that I have seen a person with PWS expressing him or herself when all else has failed.  When something goes wrong and she is unable to explain what is happening, or that she doesn’t understand, or I don’t understand, my daughter with PWS will often revert to having what is described as a tantrum, or rage, or outburst.  It is frequent in PWS and is one of the deciding characteristics of the syndrome, and it doesn’t matter how old they might be, when they get to a certain point, this child-like reversion to tantrum behaviour is the only way they can express themselves.

It is important for us as parents or caregivers, teachers or residential providers, to understand that this is basically another form of communication when all else has failed.  The article goes on to say, “A tantrum is a young child’s way of physically expressing feelings such as anger, frustration, hurt, and being upset.”  And this is exactly what is happening to those with PWS.  It is also frustration in not being able to be understood, or to actually understand what is required of them.

In the online article, tantrums are expressed in the young child as “crying, screaming, punching, kicking, foot-stamping, running away, or going limp like a rag doll, throwing or breaking things…”   How very like a person with PWS this is! 

The young child “does not have the cognitive thinking abilities to plan their tantrums or use them to upset parents."  Neither does the person with PWS.  Tantrums are simply a physical expression of the child’s feeling”.  Again, the same explanation for those with PWS.   The rages that can evolve from something that has triggered them off, are not planned in advance – they just ‘happen’ and often come out of nowhere.  The stressors for children are often “feeling tired, hungry, frustrated, overstimulated, or feeling stressed”.  Again, something we can easily recognise in PWS.

Of course, the major difference is going to be that tantrums are a normal part of child development and that children grow out of this as their communication levels get better and they feel more comfortable in themselves and in the world, whereas in a person with PWS this so often doesn’t happen.  The tantrums continue and are re-labelled ‘challenging behaviours’.  We must realise that just as tantrums in a small child are not ‘bad’ or especially naughty, so they are not in the person with PWS.

Recognising the triggers likely to set off a tantrum is the answer to successfully avoiding the behaviour.  Of course, we are not always so clever that we recognise the triggers each and every day, and neither are we born experts in the psychological management of avoiding difficult behaviours, but if we can start to understand the reasons behind the behaviour, then we are halfway there.  It requires great patience and control, often two things that, by the end of the day, we have totally used up!  This is when you mutter under your breath the prayer for serenity (only I call it the prayer for sanity):
God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And the wisdom to know the difference.

...and pour myself a glass of good wine.

Saturday, 18 June 2011

Critical Parenting

There comes a time in parenting when you sometimes start to look at your son or daughter with a critical eye.  Are they shaping up the way you expect them to?  Are they a good reflection of the way you brought them up?  Will they be strong enough not to be weakened by corrupting influences around them?
We all do it, because we all want the best for our children.  Regardless of whether the child has special needs or not.
However, many of us are extremely critical of ourselves and set such high standards that others seem to fall by the wayside, inviting our criticism.   Often we seem to get more critical as we get older—life just isn’t ‘what it used to be!’ 
Having a child with special needs can sometimes make us even more critical, not necessarily outwardly, but inwardly as we compare our child’s “failings” with the next person’s child. 
By being critical we can build up a wall of protection against others—striking first before we are criticised.  There’s nothing wrong with being protective—heaven knows, it’s what we parents are best at… but criticism also has a darker side.  Ron Potter-Efron’s book, Stop The Anger Now (New Harbinger) says that ‘being critical of others:
  • Helps me feel superior/dominant
  • Convinces me that I’m right and you’re wrong
  • Helps me avoid noticing my imperfections and faults
  • Keeps me in control by making others appear weak, dumb or bad
  • Is similar to what I do to myself.  I’m very critical of myself.
  • Keeps me from getting too close.
  • Is my way of trying to help, protect or guide others, even if they don’t like it
  • Feels good
He says, “too much criticism of others can make you mean-spirited and cynical”.  Cynicism is the enemy of optimism and happiness.  It makes us aware of how easy it is to give in, give up.  Parenting a child, or even an adult, with PWS can often have this reaction.  Tiredness sets in, cynicism takes over, and the thought of another year with all the same battles just seems to be not worth getting up for. 
One of the best resolutions (New Year's or just today's) we could ever make is to be kinder to ourselves.  If we let go some of the expectations that come with ‘critical’ parenting, learn to appreciate and enjoy the smallest of achievements, we can re-charge our batteries and set different goals.  Goals that aren’t bothered by what the next person is doing or achieving; goals that aren’t rooted in materialism, or comparisons. Achievements that are as uncomplicated  as helping your daughter get her balance to slide down a gentle waterfall—just like everyone else.
Potter-Efron suggests, “make a goal for the next 24 hours to notice as many good things about the world and about other people as you can—do this every day for a month”.
It’s good advice for the weary and the cynical!

Thursday, 9 June 2011

Residential Woes

Residential care is one of the most important things we need to think about for our children as they reach adult-hood.  This is something that IPWSO has taken very seriously, and, after two international conferences specifically designed for caregivers, a fantastic resource has been developed, "Best Practice Guidelines for Residential Care".  I wish this resource had been available when my daughter (now 27 yrs) first went into residential care. 

She has been in residential care since she was 18 years old.  At first, I thought she could manage in a small house by herself (with 24 hour staff care), but somehow this didn't work out.  Everything that could go wrong, went wrong.  She wanted to cook for herself (with supervision) and I taught her how to stir-fry food, something that was quick and easy.  But on many occasions she burnt the food and had to cook more (thus depleting the weekly allowance).  On other occasions she blamed staff for taking food from her fridge & cupboards.  She wanted to entertain and cook for friends, family and neighbours; she wanted to to try new foods, new recipes, and to do her own shopping.  After 4 weeks of this, we changed the rules.  Food would be cooked outside her house and brought in daily.  I did this myself for a number of years until staff took over and provided meals cooked off-site. 

Because meals were now controlled, she took to pan-handling in the neighbourhood.  She was extremely opportunistic and found money very easily (staff learned quickly not to leave cars unlocked, handbags unattended) and was blamed for missing money (creating denial melt-downs).  She executed brilliant reasons for needing hand-outs, money, cigarettes, extra food and so on.  One of the best was that she was a "solo mother with 3 children under 5 years old - one with a broken arm, the other who wet the bed every night, and the third who was just staring school.  Their 'father' looked after them during the week, but dumped them on her during the weekend and she had no food to give them."  When this ruse was discovered, "Elder Abuse" had already been called in as she was going around to not only choose the food from the cupboards herself, but cook it at the neighbour's house.

We shifted her to another house (still solo, but with 24 hour care) where there were no shops close by, but the neighbourhood was not great and neighbours were bullies.  She also managed to give her staff the slip and find new avenues of food, money, and, now cigarettes.  Six months later, we found another house with a beautiful little garden, no shops, and on a corner, so only one neighbour.  Again it was staffed night and day, but by now, my daughter really did have the hang of how to play staff off against one another, frighten them, and bully them.  There was a serious complaint laid, police involvement, and a court decision that she was not able to live in the community under the current circumstances.  She was moved to a very secure place where everything was locked down, and where there were a mix of clients who had also been through the courts.  None of these clients had PWS; she was the only one.  For her, to live with other people under such strict rules, was a big wake-up call.  This lasted a year, with a transition farm-house for the last few months.  I was proud of the way she had 'learned her lesson', but not proud of the fact she had put on a lot of weight.  This last home was full of big, strong, men who ate big meals.  She was happy about that! 

During the year she was there, I spent a great deal of time searching for providers for when she got out, who would be prepared to abide by the latest IPWSO Best Practice Guidelines for Residential Care.  I spent a long time combing the Best Practice Guidelines for the best ways they would fit our New Zealand culture.  I changed a little, but not a lot.  After some months of talking to providers, we chose one who seemed very enthusiastic and ready to take on the challenge.  We put an extreme amount of training and support into the staff (much from the IPWSO Best Practice Guidelines) and brought in two clients with PWS (one, being my daughter, and the third is without PW) and staggered their arrival over a period of 2 weeks, and sat back to watch.  The honeymoon period lasted another 2 weeks and these girls had the staff exactly where they wanted them.  Basically, as slaves!  They would sit around all morning in their jamas, ordering cups of coffee, expecting breakfast when they deigned to get up, morning tea, lunch, and so on.  No, they didn't want to go out and exercise; no, they weren't interested in showering, or getting dressed...

Back to the Guidelines and the application of more rules.  Exactly as the Guidelines suggests.  Staff learned to call the tune, put rules in and around everything - if the girls weren't up by a certain time, breakfast would be cleared away; if they didn't walk, swim, exercise, there would be no priviledges.  There followed a couple of weeks 'shake-down' period where staff stood their ground, and finally, the girls got used to the idea that routine would be followed and priviledges earned.  Things are now going much better as staff have quickly learned to cope with the cleverness of two young women who know their way around.  Some staff were worn out quickly, some handled it well.  There have been tough times, as well as the funny side of life. Best of all, they are happy and losing weight!

It was a risk, introducing a new service provider to the world of PWS, but one that has been well worth the taking.  Having staff interested in the syndrome, willing to be helpful, and willing to be forgiving over minor transgressions (particularly the swearing) has been paramount to this home's success.  Things won't always be easy, and the good old learning curve will always be steep, but by following the Best Practice Guidelines right from the start everyone has had a chance work together.

Thursday, 2 June 2011

Would you like to holiday in the Dolomites?

Other than the very rewarding work of being on the IPWSO board, is the great pleasure of finding out where in the world we are next meeting!  Our board meets once at our three-yearly IPWSO World Conferences, and, generally, once inbetween.  Although it might sound extravagent, we generally manage to get support with our venue and accommodation, relying on wonderful international friendships.  This year we met in Giorgio's (our CE) home country, Italy, a couple of hours north of Venice at Laggio di Vigo di Cardore, way up in the Dolomites.  While we were here, we learned that this wonderful place is offering family holidays for special groups... and we're included!

Casa di Laggio high above the village

This wonderful old 'holiday house' used to be a sanitorium for those with TB, but is now used as a holiday place for those wanting to experience the great walks, ski-fields, and explore the beautiful mountains. 

This year will see an enormous upgrade of the cassa with complete refurbishing which will encourage groups to visit and stay.  In this regard, IPWSO will be organising family holidays for anyone with PWS and their families.  Can you imagine a more perfect holiday?  And we will be able to offer a very reasonable family rate!  The menu will be designed for those with PWS in mind, there will be activities for children, and time to relax for parents.  Interested?  Watch this space.... More on this later!