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.