Thursday, January 22, 2015

The Track Less Travelled

contributed by Anne Sakaris, Tasmania, Australia

As a child growing up in Tasmania I developed a love for the bush and had the opportunity to walk many of the wonderful tracks in our National Parks.  One of the things you need to be aware of and keep watch for, particularly on the less defined and trafficked tracks, are the poles or markers that have been placed on the trees in a way that will still be visible even with heavy snow falls.  They become familiar companions and at times are a comforting sight when the clarity of the track has deteriorated.  Causes could be wet or snowy weather, lack of definition because the territory is completely rock scree or boulders – or maybe it is simply “a path less travelled”.

As I reflect on my journey as a mother of 3 precious sons, the eldest (now 27) having Prader-Willi syndrome – perhaps it is not so unlike some of the walks I have taken over the years.

The PWS aspect of the journey is definitely a track less travelled.  It is great that there are so many more “markers” appearing on the track for mothers and fathers of the generations growing up today!  I am aware that the stage of the track where the transition is being made through to adulthood can at times become harder to make out - being a Mum who has been on the track for a while, and who tends to see things in ‘pictures’, allow me to share a few bush-walking analogies that I hope will be of encouragement in your journey:

The path that bridges childhood and adulthood can sometimes seem incredibly steep and the steps can require considerable thought and strategy before being taken.  Begin preparing for this part of the journey well before you have to.  Look well at the ‘map’ to see what the options are to safely make the summit/goal.  Be aware that for our children this is also uncharted territory, what they have known and managed in the past (on the plateaus that may have come before this climb) will be challenged by circumstances outside them but also by the strength of desire from within them to express themselves as adults in their own right.  Be prepared for turned ankles or grazed knees from misjudged steps.  Rest when you need to, when you are tired it’s so much easier to take a tumble.  Be patient with yourself, your young person and all of your family members – you are all on this climb and each one will need TLC in the way that fits best - we are all different.  Tag team with another trusted adult for the lead position – my husband and I often found we did this.  Sit down on the rocks sometimes, look back at the view and remind yourself of how far you have already climbed – encourage yourself that you are making progress!

Sometimes it can seem like the pathway has been filled up with tears – making it difficult to know where to step next.  As a mother (and I know this rings true for fathers as well) I have been aware that as the years and the stages have passed there has also been a sense of different layers of grief surfacing as well.  The recognition and working through of some of the areas of loss as a young adult are significant for our young people and also for us as parents.  We observe it in them and also have to struggle with the fact that in a sense we are causing some of their grief for the sake of the hope for a long and fulfilling life – a weighty and complex responsibility.  Give yourself permission to process these times – yes you are normal and tears serve a healthy purpose.  I read recently that emotional tears help clear stress hormones from our bodies and also help produce endorphins – the feel good hormones.   Couple this with laughter - also great at producing endorphins!  A good sense of humor and ability to laugh is a great blessing for the journey.  Our special kids generally are known for their great and sometimes quite unique sense of humor – be familiar with what makes them laugh and make the most of the opportunities for a good laughter workout.  I love to see our son really laughing – it usually involves his whole body!

For many of us the school journey has been a fairly contained environment and a regular routine that our children have been happy enough to adhere to.  Breaking out of that routine and adapting to the new brings many challenges and I don’t think we can underestimate the emotional energy it takes for our young people to navigate their way through.  A Disability Services employee who was getting to know our son several years ago observed that when he entered a room or a ‘new space’ it seemed that he was literally taking in and processing everything and everyone that was in that room or situation.  Where most of us will focus on what we consider the priority of the moment, for our children it can be that they are working overtime on the inside dealing with it all.  

 Perhaps a little like this picture – there was a path through this scrub, but if you are focusing on all the bushes the path is not easily made out.  We need to be patient and listen well.  Sometimes for us as parents it is hard enough to make it out.  Connect with people who have travelled the journey ahead of you – if you can do that in your own region that obviously helps enormously.  Others can share their experience and hopefully provide some shortcuts to help in your search for direction - be it for further education, employment or day options or for forms of respite or accommodation possibilities.  Be prepared to tell your child’s story with those that may become involved in this phase of the journey.  Our children are unique individuals who happen to have PWS, which brings with it an aspect of the story that must be told well for the sake of our young people.  We need to be strong advocates for our young people but this can also be a journey for us in discovering how that looks as they move into adulthood.  If our children welcome it that’s great, but if not then it is time to be creative.  We are blessed with many good resources today to help in educating others and if the opportunity is there for training to be given for staff of support organisations or workplaces we should take advantage of it.  Consistency of support in every situation is vital.

For our family we are now in a position where we are thankful to have reached a place of much greater peace – could this be the ‘summit’?  The view is so much better from here.  Mmm, the surface is not very smooth, lots of rocks, but we can move with much more ease.  We understand these rocks and the way to negotiate them.  There were moments during the climb where I wondered if I was going to make it – my mother heart was stretched, for all in the family!  But I did make it – we all made it!  So wherever you are up to in the journey with your family, hang in there!  Every day is a new day – and there should be some incredible views along your way.

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