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Rory Gardiner's Webpage

11, Feb, 2010

Thursday 11th February 2010


 

Sean enjoyed his day at school with Rory yesterday (Wednesday).  He got lucky and had it easy!  There was a slight hiccup at the start of the day as they left late and got caught behind slow traffic on the drive west.  Rory was upset about this but settled in quickly once he reached class.  The day started with a visit from the Sport Northland Cricket Coach.  Rory had a turn batting and fielding with the other middle syndicate children.  This was followed by CRT (creative art) until lunchtime.  The children created dough models based on the story "The Art of Netting ;earned by Kahukura from the fairies" read by Mrs Timms.  They learnt about texture, colour and mixing.  Rory made a paua and it is a striking mix of blue and green.  The children used hair spray to make their models shiny.  After lunch the boys went swimming at the Dargaville Pool with the special needs children and their Teacher Aides.  They did enjoyed aquatic therapy and time in the warm water. 

I went to work at Whangarei District Council.  It was my last 'official' day in the office.  There may be an opportunity to return on short-term contract, one day per week, for three months to complete my SoE report on Biodiversity for the District.  However this has not yet been decided.  It was a busy day in the office and I got a lot of work done.  Stepping out of a formal work environment has been an interesting exercise for me.  It is disappointing to see how undervalued the role of mother is in society.  The tasks involved are seen as simple, the work load light, in is considered by many to be 'time out' for women.  There is constant pressure to be part of the workforce and contribute to the economy, and society, where the emphasis is on growth and development rather than sustainability.  It is not a holistic view.  Fear is a persuasive tool to get people to conform.  If I don't have a job how will I fill my days?  Will I be satisfied?  Will I be able to find a job when I need to?  How are we going to make ends meet?

Cancer changed our lives.  When faced with death we chose to fight for life.  Money faded out of focus.  It ceased being important.  I no longer cared what Sean or I were earning (or weren't).  We would make do with whatever we had as long as we could keep Rory alive, and ourselves from breaking down.  This is still our priority.  Our focus is on making the most of life, and doing things which make us happy.  We are more selective about what we do, and more realistic about what we can achieve.  We have learned to say No.  Unfortunately money is a necessity.  Raising a family on a single income is very hard.  We were lucky to sell the house, and two have two sets of loving, supportive selfless grandparents.  They put a roof over our heads which allows us to use what we can earn on groceries, family expenses, and being able to bring the boys across to school.  We set a little aside for treats because we think the boys deserve a few rewards.  They live a life their peers can't begin to understand. 

While I was at the office yesterday I spoke to Katherine, one of the Neuro-psychologists from Starship.  She said currently Rory is a moving target.  He will be suffering from fatigue, and process/complete work slower as a result of the treatments he has received.  He is not expected to stabilise until one year after the last interventions (surgery, drug regime).  This is 10 months away.  A full Neuro-psych assessment will be done then as they are only done once per year.  Katherine is going to meet with Rory (and us) in early March to do a brief assessment, discuss issues, provide guidance, and assist us with our application to the Ministry of Education for help for Rory at school.  She said Rory should be doing no more than 30 minutes of cognitive (thinking) activity at a time followed by a 10-15 minute break.  She said down time is essential.  She said forcing him to go faster or work longer will burn twice as much energy and tire him quickly.  He is at risk of crashing.  She said to pass on homework, and consider half days, or taking a day off in the middle of the week.  I was shocked.  This is quite different to how I have approached school with Rory.  I have let him pick up where he left off.  I have observed him quietly and provided assistance where needed.  This has been naive of me.  I knew there was more going on under the surface.  The big questions now are how to modify his routine, how to make him take 'time out', and how to fill the space.  He is happy in his class and likes to participate.  He values being normal.  I am now watching him more closely.  To end the day yesterday Rory and I made pikelets for afternoon tea today at Kody's house.

Rory started the day with Therapy.  It didn't get done yesterday.  I went for a run before work so Sean was left to get himself and the boys ready for school.  After school they were too tired.  This morning Rory showed me how he is commando crawling on his own, using his toes to push off the mat, rather than needing my hands for footholds.  School started today with a spelling test.  This went on to a word exercise where the children wrote a poem.  Rory struggled with the two activities back to back.  I provided additional explanation and helped him stay on track.  The words are Rory's own:

Everybody

Everybody needs a friend to bounce a ball with

Every boy needs a brother to wrestle

Every boy needs a mum to care for them in hospital

Every boy needs a dad to teach him how to hunt with a bow

Every boy needs a pet to cuddle up with

After morning tea, punctuated with heavy showers, the children continued analysing a story using a PCI chart (Positive, Challenging and Interesting).  There was a maths test (multiplication) then the children set up their maths books.  After lunch the children have been working on 'My Goals for Term 1 2010' on giant hand prints.  Rory's are: 

My Learning goal is I want to get better at spelling my words.  I am going to achieve this by going up some spelling levels. 

My Social goal is I want to get to go and play on the playground with my friends.