Cousins for lunch

My sister Caroline had been planning to visit before Christmas but unfortunately a road accident had created such queues that after 2 hours in the heat with the children she decided to turn around and go back to Wellington.

Today she made it through with her three Grace, Luc and Jacob and one extra friend. We got the Christmas tree cake we'd made out the freezer and even though the smarties had run somewhat the children almost finished it in one sitting!

J had a great time playing with Grace who is 2 years older than her, but Noah and Isaac seemed a bit overawed by the noise and played quietly by themselves.

Hannah and Joe came too. Joe tells me he has visited us every day this Christmas. I think he's at a bit of a loose end as he has recently split up with Abi his wife of five years. Still we enjoy having him around and he is even helping out a bit with making coffee, fixing the computer for me and a little bit of child care!

Scarey swimming

Noah's behaviour is often difficult to manage but usually we're able to keep him safe. Yesterday though he ended up learning (at least I hope he learnt) from natural consequences that weren't very safe.

We decided to take the kids swimming and try out Isaac's new Australian swim suit with floats in it. On the way we did our usual talk through the rules with Noah. "No running, always stay near an adult, listen to what mum and dad say" He knows this stuff and can even answer questions about what's good to do and what's naughty.

We had a great time until Paul had to get out to the toilet and leave me for a few minutes with all three little kids (Noah, Isaac and J) I turned to talk to J for a minute and then suddenly Noah wasn't there. Luckily I was wearing my glasses - harder to swim but at least a chance of seeing where kids are. I couldn't see Noah but I could hear him laughing and worked out he was in the adult spa just as I saw a life guard going over to the spa. A cross voice and counting to three and he was back with us. Paul and I had a little talk with him and he seemed to be settled and playing well again.

Then he sudden;y got out the pool and ran towards the other top pool and got in. I shouted at him in a very cross voice (I could tell it was cross as every other child in the pool apart from Noah looked at me in alarm!) and he deliberately disobeyed and went further into the water.

I sent Lily round as she's a good swimmer and lumbered after her myself. I got round to the top pool just in time to see Lily reaching Noah who was just out of his depth floundering a little with a life guard on the side about to go in.

Noah did have a cry then and seem to realise his behaviour had not been safe. He also had to go without watching his Wall-e DVD for the rest of the day, but any punishment that comes after doesn't really seem to teach Noah anything. We can't punish him by not letting him go swimming as this episode has made it clear he needs to be able to swim.

We have so many similar difficult behaviour episodes with Noah. He is always sorry after the event it's just that when he gets something into his head he looses all capability to think.

Christmas concert and presents

Angela and kids dressed for Christmas

Our Christmas Eve concert was the usual untuneful success - it is a family tradition now to start Christmas by lighting all the candles including the central candle of the advent crown while someone (this year J) reads "and she brought forth her first born son and laid him in a manger as there was no room in the inn"
Then follows Christmas singing and acting that has followed more or less the same format since 1992 - the video we have of that year shows Joe Sam and Beth put their all into it, playing trumpet, violin and recorder respectively and not trying to drag out the singing as they do now.

Lily was allowed to cast and direct the nativity play. She cast Sam as the innkeeper again this year, but whereas last year he had to play it in the style of Lord Voldemort this year he had to be "the joker" from Batman! Joe had to be the donkey and carry J on his back to Bethlehem!

Our concert also included dances to "Nothing but a child" by Lily and Isaac (Isaac's role was to sit in the highchair and have Lily stand on one leg and touch his head each time the words "nothing but a child" appeared). We also had "Last year I gave you my heart" choreographed by J. this included Noah J and Lily leaping forward and shouting "you gave it away" and reduced the audience to tears of laughter.

After the concert we open presents from the brothers and sisters to each other. This tradition was started when they were younger and in all the presents of Christmas day the small ones they had bought each other could get overlooked. Now these are their main presents and Hannah works most years to arrange a secret Santa so they don't have to buy for everyone. One of the best things this year was Lily giving each of her older siblings movie vouchers - however she had divided them up totally unevenly!

Hannah had made a Wall-e costume for Noah as this is his current obsession. He also got 2 Wall-e books, some Wall-e colouring books, some Wall-e snap cards and the Wall-e DVD which Santa bought in San Francisco as its not yet out in NZ.


J did very well with her favourite character Hannah Montana, getting Hannah Montana pyjamas (again from a well-travelled Santa who'd bought American clothes!) a Hannah Montana hat and wig, 2 Hannah Montana towels and a Hannah Montana mug.

I've been trying to explain to J that sometimes the best presents aren't actually those wrapped in wrapping paper but things people do. She is finding this quite hard to understand but I told her that Isaac learning to walk is a Christmas present to us, and that J herself is a present as we had no idea this time last year that she'd be here.

It is a moment that I will count as a present although it is bitter-sweet to remember sitting by J who is such a confused and hurt child during our church carol service and hear the choir sing

"Street child, beat child, no place left to go;
hurt child, used child, no one wants to know.
This year, this year, let the day arrive;
when Christmas comes for everyone, everyone alive.

Grown child, old child, memory full of tears;
sad child, lost child, story told in years.
This year, this year, let the day arrive;
when Christmas comes for everyone, everyone alive. , "


ps. Our house is coming on well. It's now got the shutters outside the study window and one of the balconies (which we hope will look better when painted.)

Hospital Christmas

Isaac has so far been to hospital on Christmas Eve and Christmas day. Yesterday he had an orthoptist appointment - Paul thought I should phone to say I couldn't come as I was celebrating Christmas, but I'd probably have a long wait for another appointment. I decided to make a treat of it for J who is having a lot of disappointment about access visits with mum and now won't be seeing her over Christmas. J has not been to the hospital before and was concerned that the hospital cafe would "smell of blood"( - it is pretty poor food but not quite that bad!) anyway we went in with Paul then had breakfast at a cafe across from the hospital. We went to check with clinic reception that the clinic was on and the receptionist said that as there were no other patients we could maybe be seen immediately ie. an hour before our appointment time. We waited but found this not to be true and had to wait the full hour - still we met up with one or two friends during this time. Then the orthoptist gave Isaac the Christmas present of needing glasses to possibly straighten his squint. She said it might be an expensive trial though as she didn't know whether we'd be able to keep them on him.
We then went to the hospital canteen to wait for Paul and J was enthralled looking out the window watching the hospital rubbish be collected. Paul took us to his office where the other doctors spoke to J and she was allowed to look down a microscope at what she described as some purple dots and orangey things, then she got a Christmas chocolate from the secretary's office and on the way out saw some bags of blood in the blood bank. She was delighted by the whole visit.

Today's visit was unfortunately not quite so joyful. Isaac woke crying at 5.30am (nothing surprising about that) but his whole bed was soaking as his mickey button had come out and his feed pump had just fed the sheets rather than him.
We expected it to be the usual routine job to reinsert it, but discovered the gastrotomy hole had almost closed up and the small hole was not leaking at all which meant the button must have been out for a while. When we tried to get a new button in it just wouldn't fit and the gastrostomy started to bleed.

We phoned children's ward who luckily were very quiet with it being Christmas and they said to come straight in. Santa of course had filled stockings and left presents on the end of the beds of Noah, J and Lily who weren't yet awake and we didn't really want to wake them up and cart them off to hospital to start their Christmas day. So in end just Paul took Isaac in, with me worrying that this was going to mean a helicopter flight to Wellington or Auckland paediatric surgery unit to get the gastrostomy reopened.

Immediately after Paul left the children woke up of course! J was very pleased that Santa had answered the note she left at end of her bed.

We had a rather muted stocking opening at around 6.30 and Lily prayed for Isaac. I phoned Paul at 7.20 and he said they'd just managed to put another button in. They'd first put in a size 10 nasogastric tube, then after a while changed to a size 12 one and finally were able to change it for a size 14 button.

So by 8 O'clock they were back home - Isaac with a new toy for being in hospital on Christmas day and Paul pleased at having been spotted by some of the nurses from his ward who'd said "Eager to do a ward round today are you?"

So now we're celebrating our usual noisy Christmas with the added bonus of Isaac not needing surgery!

How many days till Xmas?

Both yesterday and today have begun with Lily and J arguing over how many sleeps it is till Christmas. J gets it right and Lily just counts how many more candles are left to go on our home made advent calendar which of course finishes on Christmas Eve. She can't be persuaded that there will be another sleep after Xmas Eve, but in the end who cares? Certainly not Pal and I who after 10 minutes of hearing their constant arguing say "Stop talking about it - you can both think what you like!"
We're into Christmas events in a big way now. It was Christmas in the square on Saturday night - but as it rained it couldn't be held outdoors so was instead Christmas in the arena. A concert till 9pm when it was getting dark. Then the Salvation Army band led some carols, and people waved glow sticks as wax candles weren't allowed in the arena. I love the carols but it's interesting how most of the crowd disappear then not keen to include Jesus in Christmas.
Afterwards as it was already so late we said we'd drive past some of the lit up houses. One house is being featured on "Mucking In" - NZs cheaper answer to Extreme Makeover - house edition. It is now covered with lights and the owner dresses up as Santa and gives out gifts to children. It was quite special seeing how excited Noah was queuing in the dark.
Yesterday - Sunday was also a late night as we went to the carols and lessons by candlelight service at church, J and Noah behaved well, bribed by the thought of mince pies and Christmas cake at the end. Isaac entertained the people in the pew behind and attempted to join in with one choir item.
We bought the DVD "The Nativity" to watch on Sunday afternoon. Lily was entranced and today has spent a long while acting our the labour pains of Elizabeth and Mary!

Lily and her friend again

I took the boys out to see Santa - quite a mission in itself and when I came back there was music blaring from our house with Lily and her friend (same one as I last posted about) dancing along. I checked our answerphone and there were THIRTEEN messages from this friend sent at roughly 4 minute intervals. On the fourteenth try, Lily (of the deafness and excessive I pod use) heard the phone and arranged for the friend to come over.

I politely told friend she had to wait one hour between calls to us and told Lily not to wear her I-pod all the time. That same afternoon Lily went out to post a Christmas card and J on her way home from school saw Lily going the wrong way. I decided to phone her mobile but of course she couldn't hear it as she was wearing the I-pod.

After an hour and a half she returned home. She had decided to walk to where she knew there was a post box (not to the one I'd taken her to the week before!) which was unfortunately in the middle of town!

We always wanted Lily to be as independent as possible and now we're finding out what that means!

benefits (cont) - bailing out Lily

Another benefit of small town NZ is that when Lily gets into a pickle people know her and help out. This is shown by the happy ending to a most peculiar situation she got into by being too kind hearted.

She was out shopping with her friend who also has DS. This friend told Lily she had no money so Lily paid for lunch. She then told Lily she was poor but Lily was rich. (This is due mainly I think to her parents being a bit more sensible with money than us and not allowing the friend unlimited access to her invalid's benefit)

Lily felt so sorry for the poor family that she bought a playstation game for the friend's brother and another for the friends sister (people that Lily does not know) - a total of $130

To make matters worse Lily and her friend (who had of course chosen games that they quite liked too) decided they should try the games out just to be sure they worked!

Paul and I got told this story when we got back from San Francisco (along with the one about Lily being missing one day as she'd gone to watch High School Musical 3 again, totally by herself) We spent some time trying to explain to Lily that you don't usually buy presents for people you don't know, that the family isn't really poor, that $130 is a lot of money etc etc None of this really made sense to Lily - after all she was just being kind. (I know a similar story about a friend of mine who's teenage son with DS bought her a $500 necklace last Christmas - but I digress)

Last night Lily's friend's mum phoned. Luckily Lily had bought the games from a shop managed by a man we both know who is father to a daughter with a chromosome disorder. He has agreed to give Lily a full refund!

So at the moment we're not letting Lily have access to her bank card when she goes out with this particular friend and Lily is supposed to talk to us before buying anything. But does anyone have any idea how we can help her understand why her behaviour wasn't appropriate?

Benefits of small town NZ

Even though we moved here from the UK 10 years ago I still find it hard to adapt to a Southern Hemisphere Christmas. One of the benefits though is that NZ has a lot of outdoor Christmas celebrations and this year the local churches organised a concert on the green by the river by our being built house.

a terrible picture of the boys but it shows their T-shirts that I got in AmericaJ is sitting in Isaac's pushchairthere was a Fijian and a Tongan choir then a donkey came along and gave rides

More about Glide

I'm still thinking about the church I attended in San Francisco. It's unusual for something to have such an impact on me as after all I've been a Christian since my teens and know all about God loving everyone. So even though it's digressing from our blog about family life, a bit more about Glide. After this I'll get back to posting about our family

Reading through their website I was struck by this introduction to one of the leaders
"Pastor Guest believes that religious institutions in their claim to represent God’s cause in the world are thereby obligated to reach out first and foremost to the victims of affluence, and then work with the same in the process of recovering their humanity." - rather harsh I though at first but then remembered Jesus words to the rich young ruler.

I've read a few reviews about the church (how funny to have a site where you can write a church review!) where the comments that made me think most were

"They acknowledged a variety of beliefs, including the lack of belief, and noted all were welcome there. My favorite part was when one woman announced at the end of a song, "God loves you and there is nothing you can do about it!""


"The point at which Reverend Williams said that we must leave even our theology in the empty tomb was the point at which I could have given my life to Jesus... "

"As for Williams' message -- it can be reduced to this: "I'm a sinner, and I'm OK. You're a sinner and you're OK". Not exactly ground-breaking stuff, and also pretty much useless. Personal empowerment isn't Williams' message. It's "if you're hungry (even if it's because of your own laziness or irresponsibility), our organization will take up the slack indefinitely. If you do bad things, a supernatural being will forgive you." Free food and free absolution are just as much enablers of learned helplessness as are crack or heroin."

"If Rev. Williams seeks to create a community church which welcomes all for who they are, that is fine. But to carry the illusion this is a Methodist Christian church teaching Biblical values is a sham."

"Glide does everything my church talked about doing. I think if God was walking among us today; he'd be attending this church."

San Francisco photos

I'm so so pleased to be home. Each time I'm away reminds me how much I love being a mum to my kids and how I like the gentler pace of a New Zealand town to a busy city.

Having said that San Francisco is a lovely city to visit - a kind of combination of Sydney and Paris. I loved the architecture and shops, but the real highlight for me was joining hands with everyone at Glide Methodist church and singing "We shall overcome today"

Here's a few photos of our visit

One of the worst views of San Francisco and unfortunately the view from our hotel room! Paul declared it the worst hotel he'd ever stayed in in America but as there were 23,000 delegates at his conference, there was very little hotel space. The Mark Twain hotel is on the edge of Tenderloin, a rough district so there were lots of street people begging as we approached the hotel and lots of noise of drunks at night. The room was very dark (this picture looks better than it was as it was during the short period that sun shone on the wall) and needed lights on all the time. It also had a very small bathroom with no big towels, didn't provide breakfast and didn't have tea and coffee making facilities. We paid (or at least Paul's CME budget did) nearly $300 NZ a night for this!Our hotel was a lot nicer than the accommodation here at Alcatraz though! Here I am standing by one of the 5 feet by 9 feet cells that inmates spent up to 23 hours a day in.

We would highly recommend the trip to Alcatraz. It's part of a national park and I assume that's why it's not more commercialised. No cafes and only one gift shop, a great commentary to listen to as you walk around and wonderful views

Looking over to San Francisco and the Bay Bridge - the prison is so close to the city that sometimes the inmates could hear the noise of Christmas parties and be reminded of what they were missing

Looking the other way to Golden Gate bridge

Back by the piers I couldn't resist a photo of a fire hydrant - very different to anything in NZ or UK

If you look carefully you can see me standing by the red present at the bottom of this enormous Christmas tree. We had our lunch at Hard Rock cafe which you can just see behind. NZ doesn't have a Hard Rock cafe and I still have such fond memories of taking Sam to the one in London when he was about 10, so we tend to end up in one whenever we see one (although I gave the one in Singapore airport a miss earlier this year)

Another good place to eat we found was Boudins - they make the sour dough bread that San Francisco is famous for. Here Paul is having some chilli served in a bowl made from the bread - you finish your soup then eat the bowl!

We travelled for nearly 24 hours to get back. We left our hotel in SF at mid day - 9am NZ, flew an hour and a half to LA allowing plenty of time for our NZ flight at 7.30. The plane was really full with Christmas so near but we arrived a little early in Auckland (12 and a half rather than 13 hours!) at about quarter past five. We were then very lucky and manged to transfer to an earlier flight back to Palmerston. In fact we were back home by 8.20am in time to take Noah to school and immediately get cross with Lily who was walking around in her pyjamas when she should have been on a bus to work at 8.15!

Hannah and Joe were both delighted to have us back and said they may not volunteer for the job of caring for Isaac, Noah and Lily again!!

On our way home

We are in LA airport eagerly awaiting our flight back to New Zealand. This morning we had soup in a bowl made of Boudins Sour Dough at Macy's in Union Square. Took a picture by the ice rink and Christmas tree in Union Square. Hard to believe that in less than 24 hours we will be back in Summertime in New Zealand. It will be great to see the kids again.

In San Francisco

Paul and I are enjoying ourselves in San Francisco although the bank balance isn't!
Our hotel doesn't do breakfast and doesn't have a kettle so we have to buy bottled water and bagels from "Bristol Farms" which must be the world's most expensive supermarket!

Highlights have been going to Alcatraz - we had stunning sunny weather for that one day and for me going to Glide Methodist church. I am going to buy the book and movie "In the Pursuit of Happiness" as apparently the church is mentioned in them. I love their slogan "Radical inclusion". Paul is learning lots of haematology there are 23,000 delegates and lectures from 7am till 6.30pm.

I've enjoyed shopping but can't get the hang of the tax system or the American coins. The exchange rate is really against us at the moment so almost everything is cheaper in NZ.Macy's department store has so many offers though that we've brought a few things there.

Today Paul took lunchtime and the early afternoon off and we had lunch at "the Cheesecake factory" (we'd forgotten how big meal portions are so didn't have room for the planned cheesecake!) then walked round Chinatown. Yesterday we visited MOMA the modern art gallery where Paul thought he could have painted most of the pictures himself!

We're so proud of the kids especially Hannah, coping back home. We'd have been even happier if we hadn't heard from them that Noah had climbed out his bedroom window and been brought back home by a neighbour!

Inside house progress

Noah's 2 crazy actions before school

I am trying hard to persuade myself that Hannah will have no problems with Noah while I am overseas.Unfortunately Noah is trying to disprove this.
So at 8 O'clock this morning when I noticed the front door open, I quickly discounted the thought that Noah had taken himself off to school as I saw his sandals and back pack were still in his cupboard. (Every day he tells me he wants to walk to school by himself and every day I tell him he needs help to cross the roads). I carried on getting Isaac's nappy changed and dressing him, while calling Noah's name and telling myself Paul had left the front door open on his way to work. There was no response from Noah, and Lily and J couldn't see him in the garden or the playroom so it dawned on me he must have left the house.

I put Isaac in his pushchair and with that very calm voice that doesn't quite mask the worry within told Lily and J to stay in the house (J has major anxiety issues over this but I wasn't thinking about her) while I went to look for him. I walked along the first two roads of the route to school calling his name, then decided I'd better go back home and phone school to see if he'd turned up there. Just as I turned round Noah called out from the garden of a nearby house - not of anyone we know. I marched him home asking far too many far too complex questions in far too angry a voice and found out nothing. Later I worked out he hadn't heard Paul say goodbye to him when he left for work so Noah had decided to go out and find Paul.

I'd just recovered from this when J's taxi came. I went out to say gooodbye to her leaving the door on the latch so it wouldn't lock behind me. Next thing I know Noah's by my side waving J off and when we get back to the house I see the door is locked shut as he's fiddled with the lock. Th back door is locked too so Isaac is alone in the house.

This is one time when it's lucky to have a daughter flatting just across the road. I pull Noah across the road to Hannah's house and we knock and shout until we wake her up and she gets out of bed to give us her key.

I can't think of sensible consequences for these acts so instead Noah will get the ultimate December punishment and have to giveaway the chocolate from today's door in his advent calendar.

packing for San Francisco

The house is in total chaos and I am supposed to be sorting it totally so that Hannah, Beth and Joe can cope while Paul and I are in San Francisco for a week.

I just have to have a break from sorting out Xmas presents and putting away winter clothing. Isaac is helping by finding every toy I've earmarked for jumble and throwing it round the house.

The other day Isaac was quiet for a while and we discovered he had been in Noah's cupboard, emptied out Noah's clean undies and had squashed himself into their box!

Travelling without any children is going to be so much easier - I think even the twelve hour flight to LA will be peaceful. Paul will be at his conference of 15,000 delegates and I'll be Christmas shopping and reading novels and trying not to worry about everyone back home.

Lily's school graduation

On Friday, Paul and I, Isaac and a teenager from church we'd ended up babysitting went to Lily's graduation. It was lovely and as is usual in events at special needs units very accepting of noisy and unusual behaviour, so Isaac fitted right in!

Everyone in the unit got an award -Lily's was for drama and was presented by her helper who is a dance instructor. Lily did a wonderful goodbye speech and was given some flowers and a school mug. Lily has been very well liked at school and has loved being there. they are genuinely sorry to be losing her. I reminded them it will only be a few years and Noah will be coming along!

Lily giving her speech, helped by her teacher

Lily receiving flowers from her favourite helper and drama coach

New words to Away in a Manger

Our foster daughter J has had a really rough ride recently for various reasons I can't blog about and although she spends a lot of energy "trying not to think about it" she is very deeply hurt.

Which is why it was even more poignant tonight when she said she'd just heard the words of the last verse of Away in a manger and they were about her - "Bless all the dear children - the children in care." Nearly brought a tear to my eye and I'll never sing the carol again without remembering J's courage.

Happy thanksgiving

Yes I know thanksgiving is not a New Zealand celebrated festival. In fact some NZ friends of ours were at a thanksgiving dinner in LA one year and a woman asked them if they celebrated thanksgiving. They replied that as it was about the pilgrim fathers surviving in America it wasn't really relevant to NZ and the woman replied "Well I suppose you don't have anything to be thankful for in New Zealand"!

Years ago I read that Mia Farrow used thanksgiving as an opportunity to remember her adopted children's birthparents and that seemed such a great idea that I've copied it since then. At the moment the four children at home all have different (biological) mothers and fathers - I quite like shocking people by saying I have children from 4 different fathers!

Joe and Hannah came to celebrate with us and we got out photos of Lily and Isaac's birthparents and J's mum, then lit a candle and proposed a toast to each set of parents in turn. I proposed the toast for Isaac's parents, Noah proposed the toast for Rachel's parents and Lily and Georgia each proposed a toast to their own parents. It is good to have a time to remember that these are the people who gave our children life and no matter how many negative things have happened this is a core reason to celebrate. We also combined it with the way we celebrate family Friday, loosely based on the Jewish sabbath, so the candles represented too creation and redemption which seemed very apt.

We had roast chicken (rather than turkey) and had some roasted pumpkin with that (rather than the traditional sweet pie) then had Christmas pudding. This was a small sampler pudding I made to test the larger one for Christmas.

I never remember to write down a recipe for Christmas pudding and have to search the Internet for recipes that will fit with the ingredients I have available. This year I didn't want to use breadcrumbs (as Paul broke the food processor in May by filling it to the top with pumpkin soup which leaked into the motor and shorted it!) and only had seven eggs but I found a recipe that has worked pretty well.

Bath filled by Isaac

I keep saying that Isaac is like a different child since his last surgery - the downside is that although he is very cute he has become a total menace. While I was on the computer this morning I heard him crying in the bathroom. He was crying because he was using one hand to push shut one of the vanity unit drawers onto his other hand. - He does a similar thing in the toilet sometimes, pushing down the toilet seat onto his hand. Once I rescued him from that I realised that the contents of that drawer, all our toothbrushes and toothpaste were now in the bath along with one of his shoes, a pair of sunglasses, some bath toys, a toy car from the playroom and a dirty nappy!

Later once the kids were home from school they all played in the garden, then I realised the older ones were back inside but where was Isaac. I went out and called him with no response. (This reminds me of Noah when younger he could see no reason at all to respond to his name and the only thing I could call that might make him come was "pizza") I started looking all over the garden and even by the hole that leads under the house and eventually found him crawling happily in the narrow corridor between our garage and next door's fence.

We'd better watch out I think he is really in the toddler phase now!

Reece's rainbow

One of the websites I love visiting is Reeces rainbow. This was set up a few years ago by a mum who's son Reece has DS to promote the adoption of children with DS in orphanages overseas. The stories and photos of some of the kids are enough to break your heart and 80% of these children die when they are moved from an orphanage to an institution at age 4 or 5. Only people in America can adopt the kids but anyone can sponsor the adoption of a child.

This month the Reeces rainbow blog is featuring people who've adopted children with DS not necessarily through Reeces rainbow) and tomorrow our family is to be featured.

Isaac walked!

Yesterday we went to the annual Christmas BBQ held for all the lab staff in a lovely big garden. This has been the site of some horrendous behaviour from Noah in the past but he behaved really quite well yesterday - the only issue being that he lost all the tennis balls by throwing them into the hedge, still at least he is now too big to crawl under the hedge into an adjoining garden as he has previously tried to do. We also saw one of the nurses who said she had met Noah at church last Sunday and helped him return a fire extinguisher to the wall!

Yesterday though it was Isaac who was the star of the show. When he wasn't walking for his 3rd birthday we decided to make Christmas the aim with walking being his present to us. But he decided he couldn't wait for that and pulled himself to his feet in the middle of the tennis court and took four steps in a row witnessed and applauded by lots of people. I didn't have a camera then and he hasn't repeated the walking today (probably not a big enough audience!) but I will try to get a photo sometime.

This photo is showing how cute he can be asleep though, sucking his thumb.

Our house is progressing really fast now and has a bright red front door - Paul chose the colour which was supposed to be a ruby red to match the aga - but we are quite liking this brighter colour and someone said "It suits your family because its really "out there" just like your family"

Lily's CT and MRI scans

Yesterday morning Lily had her CT scan - all over in 5 minutes with Lily lying absolutely still and very proud to be told she was the "best patient of the day" As she hadn't had any breakfast before the scan, we went across the road to a cafe and she bought herself an enormous cooked breakfast (and ate it all!)

Then at quarter to 4 in the afternoon the phone went saying Lily now had an appointment for an MRI scan at quarter to five - of course I assumed this must mean they'd found something on the CT scan. Luckily Paul was able to come and get Lily as otherwise I've had had to take Noah, Isaac and J with me too. They came back within about half an hour and again Lily had behaved fantastically although she had trouble getting the hospital gown off without help.

In the evening I said to Paul "Well at least we haven't ended up on a helicopter to Wellington for neurosurgery"" and he said "I never thought we would" -the difference between mothers and fathers I guess!

Anyway we got the all clear with the MRI report today which says

Findings:
The internal auditory meati appear normal. There is no
cerebellopontine angle mass. The 7th and 8th nerves have a
normal appearance. The cochlea and vestibular system have a
normal configuration.

As noted on CT there is some fluid in the right mastoid air
cells but not in the middle ear and the left side appears
normal.

Impression:
No evidence of acoustic neuroma.

So it seems it's just going to be a typical old age sensori-neural loss needing hearing aids. I know this can occur at a younger age in DS than with the normal population but still age 20 seems very young.

Best newcomer award for my brother

I'm very proud of my brother Nigel who has just won Best Newcomer award at a glitzy Manchester event http://www.manchestereveningnews.co.uk/news/showbiz/s/1079961_diary_tvs_glitzy_night
I've even heard of some of the stars there - Matthew Kelly as serial killer even made it to NZ tv.

Nigel made a documentary about parents caring for children with intellectual disability.
http://www.hero.ac.uk/media_relations/21099.cfm

Before he went into film making he worked with adults with intellectual disability who had challenging behaviour (this is the politically correct wording I think for big violent frightening men).

So I guess I can praise him in my blog about children with Down syndrome. Congratulations Nigel!

Isaac's hospital appointment

Isaac shone at his paediatric appointment yesterday. Apart from only weighing 10.6kg (he has bounced around the 11kg mark for months now) he's doing really well. No heart murmur, showing off in the clinic room - pulled himself to stand and tried to pull all the notes on the floor etc. He is really a different boy since this last surgery and it's such a joy to see. Finally we realise what an impact his hiatus hernia has had on his development and character. I think he must have felt constantly uncomfortable.

Afterwards we walked to Joe's house as it was midway between the hospital and New Life church where I had to go to be filmed. Joe wasn't there and left his key out for me - unfortunately I wasn't sure which house it was not having been there before and this meant I ended up rummaging round in the plant pots of someone else's house. In the end I phoned Hannah and she put me right!

Isaac conveniently slept while I finished the book the Shack - this is billed as the Pilgrims progress for this century and while I wouldn't go as far as that, it was thought provoking. It's a Narnia kind of fable for adults - not quite as magical as CS Lewis - although maybe I read them with a child's magical thinking. Lots of the ways of thinking in it are directly related to the ways foster children need to be treated. I got it from our local Christian bookshop and was amazed the next day when our vicar mentioned it in his sermon.

Yesterday afternoon I was filmed along with a social worker for foster care week - well a week late I think. This is for a tiny TV station that we can't get called Tararua TV - a real labour of love by some Christians in Pahiatua. Isaac sat smiling and grinding his teeth and while I was making one serious comment the interviewer started laughing as Isaac was blowing raspberries!
They've said they'll send us a DVD of it so it will be good to see how much is usable!

We also heard yesterday that we've managed to get a holiday home near Nelson for 2 weeks in January, this will be a real break for us and probably my sister Caroline will be living in Nelson by then so we should be able to meet up with her family too. The link is http://www.holidayhouses.co.nz/properties/12612.asp

house progress

The house is coming on amazingly fast - can't say "maybe a light would look nice there" when the ceiling is on and no further changes can be made.
This is the house from across the road -having the windows covered so it can be painted white and the scaffolding can then come down.

this is Paul approaching the house in assertive mood as he wants to ask why the estimate for wooden doors is so exorbitant
this is the dining room (room at the downstairs right looking at the house) leading through to the kitchen
it contains the stairs which we have agreed on but not the balustrades or banister which we have not yet agreed on!

this is the downstairs living room with all sorts of wires across the ceiling but NOT a home theatre system

these next picture I'm a little hazier on as I don't like climbing the ladder to upstairs so Paul took them .
you can see someone coming up the ladder which is where the staircase will be - the door at an angle goes into the upstairs lounge (on the upstairs left looking at the house)

this is our master bedroom, (upstairs right looking at the house) looking into the walk through wardrobes - I have no idea why there are some bits on the ceiling - into our ensuite bathroom

these are the children's bedrooms at the back of the house - far window is our ensuite then Noah's window then foster child's window

Lily's assault that wasn't

Lily came home from school yesterday with a note in her diary and explaining to me that two boys had punched her in the neck on the bus home from work to school. She'd arrived at school upset but had calmed down with a drink of Milo. Her teacher phoned me and we tried to get the story straight as it seemed a bit different to the two of us.

I considered phoning the bus company but decided against it until I'd got the story straight. Lily at first said she'd been sitting on the middle of the back seat with no-one else on the bus and these two boys got on and came up to her and punched her she said the bus driver didn't see as he was driving. When we asked for more details it all got very confused - how old were they? where did they get on the bus? where did they sit? did they say anything? was the bus moving or not?

Lily does sometimes get confused and its hard not to ask leading questions, but I found myself thinking that when she was involved in an assault at her school in Auckland she'd given a much clearer story. I was just thinking that maybe Paul and I were bombarding her with too many questions and should leave her alone when she says "How about I tell you the truth?"

This story seemed much clearer and more likely - "I was on the bus like usual, with lots of people on it and I saw two men who looked dangerous because they were rolling cigarettes. I thought they looked like the kind of people who would punch me and because my neck hurt already I thought they had punched me in the neck but really they hadn't."

Obviously by the time she got to school her imagination had been working like usual for our drama queen Lily and she believed it had happened. It's worrying though when I consider that the previous assault involved evidential interviews and a court case. Still at least I noticed a difference in the way she told her story.

I think her hearing lack is probably also sending her more and more into an imaginary world - still we now have an appointment for a CT scan of her ears next Wednesday and she has been referred to a hearing aid specialist so hopefully that will come through the system soon.

We also had J trying to think what to say for her school news today - she is probably going to say she had a ride in the front of a police car, as that was quite exciting for her. But if the children ask why she went to the police station I've told her to say "I don't want to tak about it" It's hard to know isn't it how much a child in care should censor their story for people around them.

Isaac's turning into a toddler

It's now nearly four weeks post-op and Isaac is improving day by day. He no longer has pain with feeding and it has made such a difference -we're seeing a really sunny little boy who wants to investigate everything.
He realised yesterday that he can get up and down off the settee and has practised this often - it means we have to be sure there's something he really enjoys on TV before we sit him there to have his feed. He's now extended the skill to climbing on and off the coffee table! No longer will a hot drink be safe if we put it right in the middle.

And like a typical toddler he can immediately find things that aren't safe to play with. I just hung the washing on the line (summer may be finally coming) and thought Isaac would follow me into the garden but no he got waylaid by the back door emptying out the recycling bin and I caught him just before he tried to put some tins to his mouth!

Lily post election

Well National got in with a landslide, so Lily is very disappointed that she didn't vote for the winning party.
I was telling her that Helen Clark has resigned as leader and finished her resignation speech by saying "so it's over and out from me" Lily said "It's over and out for me too because I will never vote again."

This afternoon we've had a psychologist talk to me and Paul then observe all the family with J - she is understandably exhausted and wound up after this - with a bit of defiant behaviour to see if I would still give her time out - I did. Then she went to bed not even able to hear anything positive about herself. I said I'd talk to her doll and stuffed toys and all she had to do was say no if I was wrong - I talked about what a tiring and hard day she'd had today and how she'd had to talk about difficult things, then I said she was a special girl - and she said "No I don't think I'm special." So I've left it that her toys have to keep telling her she's special.

Duplo Wall-e

Noah's current character obsession is with Wall-e a loveable little robot from a new film.

For a boy with Down syndrome Noah is very good at looking up things about Wall-e on our computer and using all our fast Internet time on watching very poor quality you-tube videos.

To get him away from the computer I said why didn't he make Wall-e out of duplo with daddy. Paul ended up getting quite carried away with this and you can see the result!

Isaac had a happy weekend as he learnt to kiss - a very wet, noisy business but oh so cute - I'm still a bit worried he might bite me though

He is also incredibly cute when he falls asleep sitting up hugging his white teddy!

J has unfortunately not had such a good weekend as because of an incident at her home she ended up at the police station during her access visit to mum. The police phoned us but our phone was off the hook and we didn't get the message. But a kind policeman described by J as "an England man, plumpish with 3 children" looked after J while her mum was interviewed. Today I phoned the police station and asked if they recognised the description (which they did) and asked them to pass on our thanks - I wonder how much the poor officer will get teased?

Rachel very rarely phones us but chose to do so today in the middle of our church service! I phoned her back later and she is doing really well. J is longing to meet her as I sometimes tell stories of the sad things that happened to Rachel and how she behaved when she first came to us. I told J that Rachel always says "Is that girl still with you?" and J is so pleased to be remembered. Hopefully we'll be able to spend some time in Auckland during Paul's end of January holiday and maybe they can meet up then.

We were on TV again this morning - an edited edition of the earlier programme. it was good seeing how the kids have grown over the past year since it was filmed.

Repeat on Attitude TV this Sunday

I have just heard from the producers of Attitude TV that they are showing clips of their favourite shows throughout the year on their programme this Sunday - channel 1 9.30am and they're including us

So if you missed our TV appearance last time or like Lily just want to watch it again and again then tune in.

If you can't wait for that, Joe has just told Paul how to put YouTube on the blogg. Just click on the arrow.



Part 2



Part 3

Lily and the election

NZ goes to the polls on Saturday and it will be Lily's first chance to vote.
Ever tried explaining politics to a 20 year old with Down syndrome? Without being biased?
Also having to explain that she has two votes one for the Palmerston North MP and the other a party vote for proportional representation.
She had just about decided to vote Labour - mainly because she met Helen Clark in a shopping mall.

But now with the American election result we've been saying how special it is that a black man is president. She now wants to vote for Barack Obama and when we've said she can't as he's in America and we're in NZ, she's decided she wants to vote for someone with black skin and wants to vote for the Maori party!

a bit too boring

Much as I longed for a boring time I think I've had enough of it.
Round about this time NZ starts its cool down period ready for Christmas and the holidays, and every single year it takes me by surprise. We've lived in NZ for 10 years now but still I can't associate the coming of warmer weather with getting ready for Christmas.
The university term has finished now until mid February, secondary school term has only 3 weeks to go and many regular activities just run down.
We were looking forward to the foster care BBQ in the Esplanade yesterday but the weather is pretty windy so that was cancelled.
I also have this challenge to myself to only spend money in supermarkets throughout November - this means its safer for me not to go "shopping"

However don't worry - there is still plenty of housework I can be getting on with. This morning I was about to start housework when I spotted Hannah's multiple choice psychology paper and wondered if I'd be able to do it. Now I realise I am very out of date with psychology and that it takes ages to look up the answers in her text book!

Halloween weekend

My mum has decided to try to learn to use the computer -I was so impressed at how well she's coming on when she phoned me up on Wednesday to ask if there was something wrong with her computer as it hadn't received any blog entries since Sunday! I will try to blog more frequently now, especially once she's had surgery next Thurs and needs something to read during her recovery!

Life is continuing to return to relative calm.

Lily's IEP went very well after all. Her teacher had suggested Lily stay at school for another year so Lily would be happy. The rest of us thought the offer of a paid job at Farmers was just too good to turn down, and people came up with great ideas as to how Lily could fill the rest of her time.

From next week she will do work experience at Farmers 3 mornings a week (adding Monday to the Weds and Friday she already works) to prepare her for when she's working there. The school will also see if they can get her involved in an aqua aerobics class at the Lido. She only has four more weeks till the end of term.

Hannah's term finishes even sooner and she has her last exam on Tuesday.

On Halloween it was Happy Birthday to my dad and Beth's boyfriend (two different people obviously!) Lily and J were in a production at the Regent theatre from their dance class, and Paul, Noah, Isaac and I went on a very NZ Halloween treat. The miniature railway at the Esplanade park is open at night with a few pictures of pumpkins and witches along the tracks. We waited until as late as we could for Noah but at 7.30 it was still just the beginnings of dusk but he thought it was just wonderful!

On Saturday I went to the first of a two day foster parent training about behaviour management, really helpful as most training weekends are and great to meet two very experienced foster parents - I am totally in awe of one taking in a 17 year old who's committed armed robbery.

In the afternoon we went to watch the second of the dance shows at the Regent. There were hundreds of students taking part and Lily was excellent as the tail of the bird in the Lion King, but we just couldn't spot J. We found out today this was because she got sick at the last moment so didn't appear. It's been a tough weekend for her anxious about the show and about meeting the psychologist. She gave me a very big goodnight hug tonight which is very unusual for her.

Paul took the boys and Lily to a church breakfast (the congregations of the 8am and 10am services got together which was great) Joe was preaching at both services and made a great DVD of church members talking about the church family. The best quote was probably that of a 3 year old who when asked what she liked best about church replied "the play dough"

This afternoon Isaac tried to help Paul with the garden - don't you love this photo? Isaac's top says "My dad rocks" I usually put the boys in these tops when Paul has a day looking after them by himself.

Near normal frustrations

Beth has gone back to Auckland but still needs some time to recuperate fully. It hardly seems she was here for a week - it certainly wasn't a restful time! The kids are back at school after labour weekend and I'm finally getting a little time to myself in the day.

Isaac is not quite back to full strength although his cheeky character seems to be here in full force - you can see it in this photo Noah asked me to take of the two of them in the bath.

Today is a beautiful day and I hope it helps me calm down from my rather grumpy morning. Paul is away in New Plymouth and Isaac was awake crying from 4am till almost 5am then J was up at 6.15 I could hear J and Lily arguing over a drink of Milo while I was still needing my first cup of coffee. They seem to argue quite a bit at the moment some due to Lily's lack of hearing I think and some because J is still a bit disturbed from our recent upheavals and knows that she and mum meet with a psychologist this week and her future will depend on his report.

By 8am they were both trying to tidy the lounge and I was becoming irritated as they were rearranging things to places I don't like. So I said to Lily what would really help would be tumble drying the washing. Forgetting once again that incidental learning doesn't happen for Lily I didn't check what she thought I meant. When I heard the washing machine going I found she was rewashing the already washed load plus adding extra dirty clothes so the washing machine is over full. It seems I had never taught her the names of the two machines and she thought anything that went round must be a tumble drier!

I hope I can stay calm and patient for her IEP at school this afternoon. Lily told me they'd asked her to write her 5 year plan and in all seriousness she plans to be living in Hollywood making movies. I said its really hard for people to get a green card to live in America and she said "I don't want to live in America I want to live in Hollywood"

blissfully boring family weekend

Everyone has recovered and is slobbing around the house - it's great!

Yesterday the girls met up in Hannah's lunch hour from Max and had lunch together - we are quite a force to be reckoned with - me, Abi, Anika, Beth, Hannah and Lily. I had set myself a resolution to only shop in supermarkets for the month of November as a way of saving money towards the new house. However as I ended up in town with the girls this was a resolution soon broken. Paul has pointed out that it's not November yet, but the saving money bit should still hold.

One way we will save money is by not getting the home theatre system we have been quoted $7000 to $15000 for. This came about because I would like to be able to listen to music in the laundry while I'm ironing and Diamond Homes suggested we contact "Image Audio" about having speakers in the ceiling etc. They do some great stuff - way above our level of understanding about woofers and tweets and so on. We would need five speakers in our living room ceiling as Dolby sound has 6 channels, then we'd need a major space to put a box about half a metre cubed containing our DVD player, CD player, sky decoder, any games systems, an amplifier and wires to link the computer to the TV. This would of course be a dream amount of wires to Noah (and nightmare to us!) We would also need to put the TV in a different place to where we'd planned.

It would mean that watching TV would be like being in a cinema - but we actually want the living area to be for living not for sitting with your back to the lovely big patio doors blocking access to the kitchen and playroom. We have decided it would be cheaper for me to have an I-Pod in the laundry!

Today Sam, Anika and Abi came for lunch (Joe had a meeting at church) then they all pulled out of visiting Tokamaro Steam museum (we almost stopped Noah going too after he flushed J's koosh ball down the toilet!) Isaac stayed home with Beth and Lily so it was just Paul and I, Noah and J who went to this most NZ of museums. A muddy field full of well loved machines and a steam train that pulled a carriage round a short course. (you could see the ground through rusted holes on the floor) We loved it though were rather embarrassed that they only took cash and by emptying our pockets completely we could only come up with $38.60 of the $40 we needed. The little lady was rather cross but eventually let us in!

Noah found the whistle of the steam train a bit loud!