Saturday, July 25, 2009

Paul's back

It is so lovely having Paul back home, even though his round the world in 11 days trip has left him extremely jet lagged and prone to fall asleep during tea!
Paul went to Boston to a conference then to North Wales to stay with his mum for 3 days and see his dad who is in a stroke unit. He was very grateful to have his opportunity to see them both.
Isaac can't tell us how he misses Paul so it's always good to see how happy he is when Paul gets back - he just hung to his trouser legs and followed him round everywhere.
Paul was soon back in the swing of things with Noah's behaviour - we went into town after collecting Noah from school and Noah managed to run off twice. The first time he ran upstairs in the car park after I'd told him not to, so I thought I'd back up a bit and stand somewhere where I could see him come downstairs but he couldn't see me to let him feel a bit worried. Needless to say this strategy didn't work, after about 5 minutes I wondered why he hadn't come back downstairs and looked over the railings to the shopping centre below to see Noah going happily up and down the escalators below - he had taken the lift down from the upper floor.
The second time we were walking past the court house which has glass panels at the front when Noah suddenly ran in, past the security guard, through the metal detector and down a corridor. The guard ran after him at first then obviously decided he shouldn't desert his place at the front desk so beckoned me through. I set off the metal detector but was still allowed to follow Noah upstairs (I guess if you found a very co-operative child with DS this would be a good way to smuggle a gun into the court house!) There were signs for the jury room and six courts but as I couldn't see Noah I had to call him so got a dirty look from a policeman guarding the door of court 3. We finally got down the stairs and outside again with some heart felt apologies from me.

Sunday, July 19, 2009

Noah tries to help

Noah never means badly, he just causes so much extra work for me and then I shout at him and tell him all sorts of terrible things (like how he's wrecking our home and how Hannah wants to move out as he keeps pulling out the wires of her computer) and later I feel really bad because often it was a misunderstanding or he wanted to help.

Yesterday I lost him and came my closest ever to calling the police - he waltzed into the house just as I'd written down the phone number of the local police station and was leaving for one final look for him before I phoned them.
We went to our local library (about 15 minutes walk away) then to buy stamps. There was a long queue in the post office and Noah had been misbehaving by looking through all the children's magazines and attempting to get out any free gifts attached to them, so when he went and sat on the wall outside I just left him as I could still hear him. He was making his usual 'urr' noise that he does while day dreaming. The noise stopped but I didn't think about it until I went outside (3 mins max) and he'd gone! I went up and down the nearby streets calling him, looking through shop windows until I eventually decided he must have come on home ahead of me - he has a good sense of direction - so I started home. I phoned Lily at home 4 times on the way but no Noah. Once home I phoned the library to see if he'd gone back there but there was just an answer machine as the library had now shut. I checked our phone messages, looked up the police number and in breezed Noah"I looked in the shop and no mummy so I came home"
I haven't been able to get a conclusive story from him as to what happened as he is obsessed by the movie 'Horton hears a Who' and the various explanations he has given relate to this eg. he went into hairdressers and asked to be made to look like the mayor of Who ville, he went down a road where he thought Jojo, the littlest Who lived.

Today he tried to help with housework, he unloaded the dishwasher that was unfortunately full of dirty crockery waiting to be washed, then he loaded the dishwasher after brunch but unfortunately did not take pancakes off the plates first!

About two o'clock, I asked why he was pulling the dining room curtains and he told me he was getting the house ready for the night. I opened the curtains told him it was too early and thought no more of it. Later I was baking with him in the kitchen, having a lovely time, when I heard an odd noise of water from above my head which is where our ensuite bathroom is.

I said to Noah "I think I can hear water upstairs I'd better run up and check" He didn't say anything and didn't come near when he heard me screaming for Hannah to get out of bed (poor Hannah has gastric flu and was asleep) and help me mop up the flood.

Noah had decided to run a bath for him and Isaac as part of getting ready for night. The bath was full to overflowing with steaming hot water and our floor (that the flooring fitters told me mustn't ever be submerged) was covered with about 2 cms warm water.

Eight towels and a lot of shouting at Noah later and I've finally calmed down, done the extra laundry and am looking forward to the start of school again tomorrow!

Thursday, July 16, 2009

Noah tries not to touch

Some of Noah's behaviours are similar to those found in autism (he's at very high risk of autism -around 35%, because he had infantile spasms) especially the need to touch switches and wires. Every night as it gets dark he goes round and turns on every light in the house - EVERY light, even those in rooms we don't use or have already got adequate lighting, and every evening I try gradually increasing threats to no avail.
He also loves to pull all the wires out of computers, TVs and the DVD recorder he really knows this is wrong and will get him into a lot of trouble.
With Paul away I have explained again and again to Noah that if he breaks anything I will not be able to fix it and we'll have to wait until dad is home. I've told him when he gets up in the morning to come into my bedroom rather than going downstairs. He understands all this and wants to comply.
Why then have I had to send two emergency texts to Paul, the first saying we have no hot water (his suggestion to check the gas switch in the back garden showed that Noah had turned this so instead of being topped up by gas we were relying on solar heating which was only heating the water to 18 degrees in the middle of an NZ winter!) and today's that we have no reception at all on our DVD channel and no sound on the TV channels after Noah tried to plug in our video camera at 6am this morning (no thoughts from Paul on this one, mind you he was just about to catch an overnight flight from Boston to UK)
Isaac is now being fed sitting in front of Little Einsteins without sound, but Lily is helpfully improvising a sound track for him!

Noah and Hannah have recently arrived back from the church holiday programme, Hannah looking rather exhausted as she really thought she had lost Noah at the end. They found him sitting in the main church with another little boy with special needs they hadn't even realised was missing.

Noah came into our family room, saw Isaac was watching TV without sound, went over to the TV set, pulled out a wire and the sound came on! He had plugged in a lead meant for headphones apparently.
Hannah looked at the back of the set and found one set of wires that led from the TV set then back to it again which must have had something to do with Noah. She rearranged a few wires and at one point we got sound for our DVD but no picture so looks like we may not be able to watch the 'Sex in the City' DVD together tonight after all.

Tuesday, July 14, 2009

Jack and the beanstalk

We managed to get free tickets for a panto of Jack and the Beanstalk put on by a local youth theatre group (as per usual in NZ found we knew someone involved - the stage manager is in the church youth group)
Noah was very excited until we were actually sitting waiting for it to start when he said 'Let's go home now.' I asked why and he said he was frightened of the giant's boots coming down the beanstalk - I reminded him this was at Fantasy cave at Dannevirke not in this theatre in Palmerston North. He was not quite convinced so I reminded him that at last years panto of Puff the magic dragon, he had not wanted to stay once he saw the dragon's cave but in the end had enjoyed it. Still not quite convinced, I told him that if the giant was scary he could hide his face in my scarf and he decided to stay.
The giant turned out to be a school boy in platform shoes and Noah watched him through my scarf for about 30 seconds then decided that perhaps he could cope with it after all!
I sat through the play thinking what an odd story it is - it seems to encourage stupidity (selling a cow for some beans) deceit (giants wife letting Jack in and hiding him) and stealing (good on the magic harp I say for calling out to her master when Jack who has already stolen bags of gold and a goose that lays golden eggs, tries to steal her)
Anyway Noah didn't seem to share my misgivings at the story and raced up on stage when invited at the end. Once there he was struck dumb so reverted to an earlier form of communication and signed 'cow' when the pantomime cow appeared on stage.
Two days later and Noah is still quoting 'fee, fi, fo fum' and also the catch phrase Jack used 'In for a penny, in for a pound' How am I supposed to explain what that means to a ten year old with DS?

Sunday, July 12, 2009


It's about a year since our last visit to fantasy cave at Dannevirke which means I must have been blogging for a year now!
Noah chose that we would go again these holidays on one of the days Paul had taken off. It is a quintessential NZ experience I feel and I plan to take my brother and his family on their first visit to NZ this December. It's like a big Christmas grotto, a bit faded in adults eyes but magical for children, run by volunteers who call themselves cave dwellers who charge only $1 per child for admittance.
Noah is especially fond/frightened of the mechanical giant's moving boots at the top of a beanstalk.

Afterwards we noticed a local cinema, which was actually mostly a cafe which maybe should have forewarned us. Still it said it was showing Monsters vs Aliens at 1.30. Noah loves this and it's stopped showing at the main cinemas and Paul had never seen it so didn't know about the giant monster that Noah has nominated as his character. So we raced through lunch and arrived at the cinema a bit late expecting to miss adverts. Anyway we got there and two teenage girls were about to shut the cinema but when we arrived they opened it just for us. We couldn't pay for tickets on eftpos, they only take cash. We had to wait outside the cinema until the lights went on, we tried before this and it was pitch black and felt refrigerated

It had obviously once been a lovely cinema but now is a bit outdated - presumably the residents of Dannevirke know this and also that it's very very cold (one heater for whole place - I wore my scarf around my ears and mouth in the end) and also that the film doesn't fit the screen or play at the right speed!
The film was meant for wide screen but they squashed it, when there was a shot of the earth it was rugby ball shaped and the women were very very thin!
Also the whole picture did not fit on screen, this didn't matter too much most of the time but the titles read only "monsters vs"
The film played very very slowly, I thought the funny music at the start was a kind of spoof on the dreamworld titles at first but when the female characters sounded like men in drag, and the picture flickered as we got to see each individual frame we realised it was just too slow!
The good thing was being in the cinema alone (the only other child there left about half way through presumably because of the cold!) which meant Noah could explain to everyone which character they were and this didn't deviate at all from his earlier decision (I don't know how to post a link to a previous post May 18th or I would).
I truly think Noah didn't even notice the cold but Paul, Hannah and I certainly did and were so grateful to be warmed up back in the car. We had joked to Hannah that old cinemas used to be called flea pits and she claimed she was itching all the way home!!

Friday, July 3, 2009

Noah's birthday

I can hardly believe my little boy is ten. The drama surrounding his birth really seems like yesterday, to think before he was born we had not really had any dealings with the NZ health system (apart from Paul working for it) then within his first year we had done two air ambulance flights, a helicopter ride, two ambulance journey's, five days on a ventilator, two major operations, three weeks in intensive care and another nine weeks on other hospital wards and had diagnoses of Down syndrome, persistent pulmonary hypertension, long segment Hirschsprung's disease and infantile spasms.

But today Noah couldn't care less about his medical history, he just wanted to get on and celebrate his birthday. He was so enthusiastic that when he got up at 5am and discovered I hadn't yet decorated his cake, he decided to do it himself.
Unfortunately this meant sticking a candle right through the middle of the expensive icing picture of Wall-e that I had spent a long while finding and buying from trade me.
This was one of the times when we didn't need to tell Noah off - he was so sad when he realised that he had broken his special icing. I had a go at major Wall-e reconstruction and saved the bits of cardboard that came with his party hats etc and used them to decorate the cake so we ended up with this salvage model....

Noah really enjoyed his party, he only invited three children (all with special needs) and didn't mind whether they joined in the games or not. We adapted the words of Farmer's in the Den to "Wall-e wants an Eve" then "Eve wants a plant" and Noah thought this was amazingly clever and went on singing all night!

Beth, James and Anika had driven down from Auckland for a long weekend (Sam had to work so couldn't come) and Anika gave Noah the remote control Wall-e that she and Sam had bought during their holiday in the UK (It took up almost all their suitcase!). Noah loved it.

We are now trying to think of all the things we can get Noah to do by saying "Now you are ten you are old enough to...." Noah thinks it should be "go to school by yourself" but we are trying "get yourself dressed in the morning" and "eat fruit".