Saturday, 29 October 2011

Training the puppy

Recently we got a new pup and she was everything a pup should be: fun, pretty, cuddly, and very naughty.  She was into everything and anything, she chewed anything, she'd drag things around, and, of course, she'd pee.  Anywhere, everywhere and any time.  Just like any pup.  Eventually once she got to know the system, and once we got to know her better, she started to settle down. 

Just a few weeks ago, I decided to hire a personal puppy trainer.  Kind of like a puppy whisperer...this wonderful woman came out to our place and for three hours she trained both me and the pup.  Both of us were trained to respond to good behaviour, and both of us were rewarded, the pup with something she really liked (in this instance liver treats) and me with the knowledge that the pup was learning to respond to me and respond to commands that would help both her and our family live together in harmony.

The essence of the puppy training was to reward good behaviour and ignore the bad.  Each time the pup leapt up onto the trainer, she would turn aside and ignore.  Once the pup stopped, she was rewarded with a 'key' word (in this case it was simply the word "yes!!"), and given a small treat.  Same with learning to come when called, to sit, lie down, and to walk nicely on the lead.   Later, my trainer told me, we could cut out the treats and just reward with a kind word and petting.  Within 3 hours, the trainer had both the pup and me following a very successful "ignore, redirect, and praise" routine.

On the other hand, elsewhere this week I also saw a young horse being trained to walk quietly and behave without constantly dancing around on its hind legs.  The person doing the training spent much time jerking the horse's head down and flapping a plastic bag in its face.  After watching this for an hour, with no change in behaviour in the horse, I said to my friend, "where's the reward for the horse's good behaviour?"  She said, "well, it doesn't get jerked around!"  Hmmm.... I thought.  I wonder if the horse knows that's the reward?

I bet you're beginning to see where this is going? 

And you'd be right if you said it sounded a lot like working with people with an intellectual disability.  Or maybe you said it sounded like raising your own child.  You'd be right on both counts.  It's such a simple and successful method: ignore the unwanted behaviour, redirect to the preferred behaviour, and immediately reward the new 'good' behaviour.  It's so simply that it almost gets lost in the mountains of information on behaviour management that's available these days.  Of course, there is a huge amount of really good stuff about behaviour that you can learn and apply, and many experts have added to the excellent resources available, but the core to it all, the base on which to build a good relationship of care, trust and understanding, is this simple premise - reward good behaviour whenever you see it, wherever you are. 

Thursday, 20 October 2011

Ignored and Forgotten?

This week I have been staying with my mother-in-law helping her come to terms with a particularly debilitating and progressive illness.  It's been my job to coordinate help and care from the agencies - both public and private - and to tie it all together in a way that will help and support her.  It has been a salient reminder first of our own frailty as we face the aging process, and secondly the similarities in the way we want the best care for our elderly and for our young adults with PWS.

Although there are some similarities in the care process, there are also yawning gaps in both groups.  First is the cost of care for the elderly to be cared for in their own homes; over and above what the government can offer, it is expensive without a doubt.  But getting the best care is what we want, and although there are many free services of help health-wise; having someone to live in the house, caring, assisting, cooking meals, running errands, going on outings and making life enjoyable and dignified, needs to be recognised financially if it comes outside the realms of social welfare.  The other option is to live in a sheltered residential environment, or retirement village. 

Our young adults with PWS are just as vulnerable and, quite often, medically frail, as the elderly.  We also want to make their lives enjoyable and to give them dignity and a reason to get up in the mornings.  In most of the Western world, residential placement for those with intellectual and physical disabilities is provided by the government.  Some are really wonderful with kind and caring staff.  Others leave something to be desired.  I expect it is the same with different retirement homes.  The vast difference is, of course, that as non tax-payers, our young adults can't be expected to pick up the tab for more personalised one-on-one care.  And agencies are not able to provide more than their budget allows.

Caring for the vulnerable, be they elderly, or disabled, is not a job that many people choose.  In fact, it takes a very special kind of person to do this, someone who cares for, respects, and really understands the person they care for.

My question is this:  Do we value our elderly and disabled enough to be able to give them the choices in life that they deserve, or are they still an ignored, forgotten part of our society?

Friday, 14 October 2011

A little Ned Kelly?

Any Australian worth his or her salt will know the story of Ned Kelly, the Irish Australian bushranger who was outlawed with a huge bounty on his head.  He was the one who wore the 'tin can' on his head as protection, as his image, and his disguise.  He was the one who never gave up, who fought the system with strength and daring.  He is an Australian icon, indeed.

So, let me introduce you to another young Australian who, like his namesake, will battle the system and never give up, and will always have a band of loyal followers ... meet Tobias Arnold Ned Kelly, born on February 27th, 2011 in Canberra.  Anxious to arrive in the world, he made it 6 weeks early.  Diagnosis came  5 weeks later when a chromosomal study was done straight after his birth. 

His parents, his brother Clancy, and sister, Grace, live four hours away from Canberra in southern New South Wales.  His mother, Maria, is a photographer (as you can clearly see!). 

Tobias spent 6 weeks in hospital, he was fed with a nasal gastric tube for several months, although now at 7 months, he is tolerating solids pretty well.  A sleep study is going to be done so that he can start on Growth Hormone Treatment.  Maria says, "Tobias is an extremely placid baby and we are enjoying his brief giggles and smiles, now that he's a little older.
"His sister, Grace, and brother, Clancy, dote on him daily and he recognises their voices and presence with his gorgeous eyes."

Maria is keen to link up with parents in Australia, and around the world.  Networking and sharing stories is one of the most powerful supports you can offer another parent, so I hope you will contact her via our Facebook pages.

Friday, 7 October 2011

Come and meet Luke...

Luke with Boots

I first met Luke a year ago when I was in South Africa giving some talks and workshops.  We stayed with Luke's family in St Lucia and spent a few wonderful days with them all.  Luke and his brother captured our hearts and soon Nick became "uncle Nick".  Luke's family have been through some tough times, but they are all incredibly resiliant and courageous.  Let me tell you a little about Luke:

Luke is five-and-a-half years old and attends a pre-school in Durban in a class of sixteen.  The school has been wonderful with food security and sticking to a routine - they take time to explain changes to Luke and have made it their policy to always tell the children that if something (an outing or activity) does not happen because of rain etc, they will do something else.  This has meant that Luke is extremely happy and secure.  He does speech therapy, occupational therapy and horse-riding twice a week.

His mother, Janet, says, "He has just started to become more aware of food and tell me he is hungry more often, but I can still keep to our time frames for food.  He has an incredibly memory about everything!!  You dare not say something about what you are going to do, buy, or say, as he will make certain that you do!  He has a wonderful sense of humour, he idolizes Matthew (his older brother) and always says he wants to be just like him."

Matthew with Boots
Let me tell you a little now about Matthew... in Janet's words:

"Brian and I are parents to two wonderful boys, Matthew (13) and Luke (5).  Throughout my pregnancy with Luke we had prayed for a normal birth and normal child, no issues.  We did not ask for an "Einstein" or a "Sports Star" just a normal baby.  You may ask why the focus on this - well Matthew was born with a congenital heart defect and honestly, we had been through the mill with him.  At the time of Luke's birth, Matthew had already had 5 open-heart surgeries, we spent weeks outside of ICUs and Matthew has consequential health and learning issues.

"Dealing with two boys with medical as well as educational issues has been difficult to say the least, but we press forward.  Matthew is an amazing older brother and has immense empathy and understanding of Luke, perhaps because of his own health issues.  He is wonderful with Luke, a real friend and brother to him.

"We are constantly questioning and researching how we can give our boys what they need in the future.  Of huge concern is the lack of PWS-focused residentail care for our children in South Africa, because, let's face it, we will not be around forever and we already know how difficult times can be when we do not have the support we sometimes need.  Brian and I are looking at facilities (and if necessary we will develop one ourselves) and are trusting that we will be able to do something before Luke requires it.

"One thing we are sure of is that we would not be where we are with our boys today without our faith and trust in God to see us through.  Even despite this, at times it has been difficult."

Matthew still faces more surgery and has recently been through another battery of tests and is on oxygen.  Personally, I have taken great strength from this wonderful family and it was such a pleasure and joy to get to know them during our short stay in South Africa.  Janet has allowed me to tell you a little of their story...

Saturday, 1 October 2011, she joined WSPA

Moon bear
Thanks to

As we pulled up to the supermarket carpark (and parked as far away as possible... for extra exercise), the WSPA (World Society for Protection of Animals) posters were plain to see.  There was a sorry-looking bear with a ring through his nose, and a very sad little donkey with liquid eyes just imploring you to do something.  A stronger magnet for someone with PWS you could not hope to choose.  Immediately my daughter went straight for the posters and engaged a rather patient young man in conversation:
"What's wrong with those bears?  Who did that to that donkey?  How can people be allowed to do that?  What do you want me to do to help?"

The conversation became seriously involved with how Moon Bears (named for the moon-like crescent on their chests) are captured, their claws and teeth ripped out, and used for bear-baiting.  They are also killed for their gall-bladders. Although it has been illegal since 1989, it still goes on.   WSPA rescues the bears by intercepting bear-baiting fights, and also by offering better incentives for money earning (raising crops, selling produce etc), and then puts the poor clawless, toothless animals into a special reserve where sometimes a claw or two might grow back, but the teeth don't, so they live on soft foods and fruit.  Francie absorbed all of this, at the same time telling me she was going to join up and she would make sure her budget included the $3.60 (NZD) a week necessary.  This link is a video of what happens - warning, it's very graphic, but it does show the refuge with happy bears at the end.

Of course, my mind was racing back and forth between the interest she would get through joining WSPA and the fact that her miniscule budget barely allows her to feed her cat and buy some personal items like shampoo, not to mention tobacco (that's just another story).  The nice young man, eager to make a convert, said she could get out of it at any stage, or postpone payments if needed.  Of course, Francie was metaphorically captivated and eager to plant her signature on the contract. 

It always interests me how our kids with PWS see the world - they instinctively know who is worse of than themselves, they have a clear idea of their own values, they have a desire to help, to nurture (and to feed) those who can't help themselves.  This was such an occasion.  It will give her an interest, and a kind of ownership, an authority, if you like, over something that she can do for something for someone else.

On the way home in the car she said (absolutely true to form):  "Well, at least my $15 will go towards some fruit for the bears!"