Party photos

I promise to update the blog properly some time. Meanwhile some family photos from the joint party for our 30th wedding anniversary and Lily's 21st birthday.

I finally got my wish to photograph us on the stairs like in the Brady bunch!

All the kids except Joe (in Korea) were here, they've all signed a photo frame for Lily and we'll make a print of the one with her cake to go in the centre of the frame.

30th wedding anniversary

Just a quick update and apologies for not posting for so long

It was our 30th wedding anniversary last Tues and Hannah kindly looked after the kids so Paul and I could have a two day break in Martinborough (wine country) which was fantastic. We are having all the family here this w/e and having a party on Saturday. The invite is copied below - lots of people think it's Hannah but no that is me aged 22!

Paul is working like mad to make a DVD of the events of the past 30 years and I am supposed to be scanning in some stills of the many houses we have lived in (we've shifted 18 times I worked out) rather than blogging.

Thanks for the tips about Disneyland that people posted, they're going to be very helpful.

Lily has got her hearing aides and I have changed from cynical about whether or not she needed them to amazed at the difference. She keeps saying "Now I can hear ..... examples are the alarm on Isaac's feed pump, being called to unload the dishwasher, though the toilet door.

The hearing aides are red and black -very trendy- I will post a photo when I get a minute.

not always Noah

I planned to call this post 'not Noah' as things have happened this week that were not his fault. Unfortunately though today's events meant I had to change it to 'not always Noah'.
Today started (6.30 am) with Noah coming into our bedroom wearing his swimming trunks, when asked why he was dressed like this he said "So I can splash in the water on the kitchen floor"
Yesterday evening we had a goodbye party here for Paul's registrar who is returning to Scotland, so quite a few glasses and bottle of wine were still around in the kitchen which we didn't want Noah to touch. Paul disappeared downstairs with a few bath towels and soon Noah didn't need his togs as the floor was dry again.
We expected lunch time to be nice and easy as we could just warm up left over from the party, but the saucepan didn't see to be warming very fast and we realised the aga was almost cold. Noah said he had only pushed one small button with a circle on it for only a very little while.
Paul looked at the aga instructions and read "to completely extinguish the pilot burner press the button with the circle on"
We have finally lit the pilot light again (this involved going to the DIY shop to buy a special lighter) but will need at least 24 hours for the aga to be back to full heat.

Anyway the post is supposed to show it is not always Noah. Our solar heating system had stopped working and was reading temperatures of 130 degrees centigrade on the roof (in mid winter!) and only 14 degrees in the tank. I called the engineer as I was worried the pipes on the roof might explode or something.
When he came he found there was air in the system. I said to him in amazement "But how could a 10 year old with Down syndrome get air into the system?"
He looked at me as though I was a bit odd and explained it had nothing at all to do with Noah but with the way the system was installed!
The other incident this week was very scary but involved my friends son ( I'll call them Jackie and Robert) who is the same age as Noah and has severe autism as well as Down syndrome. It showed me how some children can be far far more difficult to manage than Noah.
Jackie comes for afternoon tea each Monday after school and it's one of the few times she get to go out with Robert and his sister who is also on the autistic spectrum.
Robert likes to climb into Isaac's cot and get hold of Isaac's toy frog and bite it (he has very few toys he likes and this is the same as one he has at home) and then climb between the sheets of our bed. If we try to stop him he plays instead with the sliding doors in the (supposedly) adults only lounge.
This Monday we decided to keep him downstairs. Robert is totally non-verbal, doesn't understand instructions and is quite big now for Jackie to lift. He nearly knocked Jackie downstairs at one point but we managed to get him down and then let him sit in the garden underneath the washing as he likes to watch it flapping.
I consider the garden to be well child-proofed as it has high fences around it and a swimming pool like gate at the only entrance.
We sat in the kitchen and could hear Robert. After a while I said "Where's Robert?" thinking he was back upstairs in our bedroom. Jackie looked around and couldn't find him and really started to panic.
I have to say at the time I thought she was over-reacting but in hindsight she was right!
She ran outside and I searched the house and looked along the river banks from our balcony but couldn't see him.
I decided to phone the police thinking that if anyone had found him they'd phone the police. By the time I got through I saw Jackie holding Robert outside.
He had climbed down the stones of the river bank (so was too low for me to see him from our balcony) and had been about to get into the river. Jackie had screamed at some passers by to grab him as he has absolutely no sense of danger and would have been swept away in the fast moving water. She says he is attracted by moving things so would just have wanted to get to it.

We worked out that he had probably dropped his toy frog over the gate in the garden then being unable to tell anyone about it had climbed over the gate to get it (Noah then helpfully demonstrated how it is possible for ten year old to scale a 1.2 metre high gate). Then Robert would just have wandered around until something attracted him.
Jackie has now decided that Robert will have to spend his visits to us strapped into his wheelchair and I've started investigating GPS devises that children can use. Apparently the Alzheimer's association have some which they will loan out.

It has also made me think about how terrible it would be to lose Noah at Disneyland in four weeks time. I think we seriously may rent a wheelchair there so that Noah can be strapped in it especially when we're waiting in queues. I've read on some forums that this is allowed for children with autism and other disabilities and sometimes you can enter rides by less crowded entrances. They say though that other people may frown on using a wheelchair for someone who can walk as they think you are trying to queue-jump and get special attention.

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.

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!

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!

UPDATE
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.

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?