Rory Gardiner's Webpage

09, Feb, 2010

Tuesday 9th February 2010


Rory lost his first tooth today!  He has had a wiggly tooth in the middle on his bottom jaw for a few months but couldn't bring himself to pull it out, or let any of us near it.  How Rory reacts to physical pain is a mystery to me.  When it comes to little things such as hot or rough ground under his feet, or a loose tooth, he seems hyper sensitive and cries when I know it wouldn't bother his peers.  Yet he can sit quietly while the Doctor puts a needle in his arm and draws blood which I know would reduce most of them to hysteria.  Many times over the past few months when Rory has bitten into something he has complained about the pain in his tooth and there has been a little blood.  This afternoon on our way home in the car it happened again.  Sam was egging Rory on to pull the tooth out (especially after the dental nurse said on Monday it was only just hanging in there).  Rory kept saying he couldn't but kept fiddling with the tooth when out it popped.  He was shocked, delighted and curious "I feel gappy".  I was pleased for him.  It may sound like a non-event but it is a milestone in his life I wasn't sure he would live to experience.  The littlest things often touch me deeply. 

Rory is doing well at school.  He has a neat group of children in his class and has found it relatively easy to fit in.  He likes Miss Hallett the teacher.  His placement has given him a real leg up.  I assist Rory when he needs me, work on Rory-related paperwork in the quiet times, and help out Miss Hallett (Wendy) when she needs an extra pair of hands.  In some small way I feel like I am giving something back, as I know many others have given to us.  Just today Mrs Stevens dropped in two jars of her delicious jams for us (thank you).  How best to support Rory at school is a dilemma.  Some things are obvious such as the chair with wheels and getting him to lead the class holding Miss Halletts hand as they make their way around the school.  Others are not i.e. identifying when he has hit a wall and needs to take time out, stepping in to provide support with school work, and teaching him how to take responsibility for keeping himself safe and happy.  It requires vigilance, and it will take time for a pattern to emerge, and for solutions to be found.  There is a temptation to skip ahead, to think he is doing so well I can afford to leave, to sweep what he has been through under the carpet.  This would be a huge mistake.  One accident could really set Rory back.  It is easy to judge a book by its cover and believe what you see on the surface.  As with a book nothing is as simple as it seems.  I am prepared to wait, to support Rory as long as need be.  I enjoy being at school.  The down side of this is I feel a great deal of guilt, for not being at work earning money, and furthering my career.  I have done so on some level for nine out of the last ten years.  I feel like I am letting my family down which I know sounds bizarre. 

Today school started with a spelling test.  About half the class have moved on to harder word lists and it was pleasing to see Rory amongst the group.  The children did some writing with the theme 'everybody needs something' followed by a word exercise.  After morning tea the class completed two maths tests which Rory found challenging, then cooled off with a swim.  Rory utilised the computer while they were away.  I think there is a real danger for Rory to be side lined during physical activity because he cannot currently participate fully because of balance, co-ordination and weakness deficits.  Putting him on the side line all the time sends him the wrong message.  It tells him he is not capable or good enough, and it is ok to opt out.  I do not accept this.  I have emailed the Halberg Officer at Sport Taranaki to seek assistance for myself and the school on how to get Rory involved, and modify games so he can participate in a satisfying way.  After lunch the children organised their topic books and had a recorder lesson.  Rory found playing the recorder a challenge.  The recorder is held in the left hand and the notes played with the right.  Rory struggled to hold the recorder steady and ran out of puff during the songs.  I popped out briefly to catch up with my good friend Heni.  It was lovely to feel her hug.  She gave me some money the visitors at Waipoua Visitors Centre had donated for Rory (thank you Heni).  Sam and I went for a run/walk when we got home.  He and I have started running together and we are building up to 5km slowly.

Yesterday (Monday) it was hard to get out of bed so Rory missed his therapy.  He led the class to assembly holding Miss Halletts hand.  This slows the class to walk at his pace and reduces the risk of him having an accident while trying to keep up.  Rory sat on a chair on the side as I hadn't finished his pillow.  In class the children had a spelling test and did some word works exercises.  When the class went swimming Rory spent a little time on the computer then worked on his name label.  After morning tea there was further testing; spelling and maths.  Although Rory is working slower than his peers he is getting few of the answers wrong which is encouraging.  After lunch the children started with silent reading then decorated their birthday cakes for the wall.  Rory sometimes needs to be reminded to use his left hand to steady objects i.e. paper, ruler.  Before the bell he went to see the Dental Nurse.  He needs two fillings and we booked a time for this to be done in the next couple of weeks.  After school at Whakapara I caught a baby Copper Skink on the concrete step.  It was a perfectly formed miniature version of an adult.  It tasted the air with its tongue.  The boys were delighted when it moved over their hands.  Rory was a little down last night and before bed he sat with me and said "I wish I could run mum, I miss being able to run".  I explained to him while he may struggle now he will be stronger in a few months.  We also talked about how the primary tumour was in his cerebellum, the centre for balance and co-ordination in his brain, and how getting it out caused some damage.  So not being able to run is something he has little control over, is not his fault, and will take time to overcome.