I came across an article on tantrums in children the other day. It’s on the website: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Tantrums?open
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.