Friday, December 24, 2010

Christmas Eve

We're (Paul, I and the two boys) just back from two nights in New Plymouth where Paul had an away clinic. We saw the lovely Christmas lights at the park there and bought a lovely wooden children's crib scene that we'll add to our Christmas collection.
Not totally the relaxing time we'd planned as Lily decided on the first evening by herself (just two hours before Hannah was due back home from her job in a local shop) that she was frightened to be alone (this has never been the case before - usually she is only too pleased to be rid of us) and invited another teenager with Down syndrome round! We got a text from Hannah saying the two girls were now getting themselves food at 9pm alone in the house and planning to watch videos all night Lily can be pretty sensible alone but sometimes gets silly and having someone just as silly with her sounded like a recipe for disaster. It ended up OK with Lily spending two nights at her friends house but was not what we wanted to have to sort out by phone from afar.
Lots of family members are travelling this Christmas Eve - we've just done the three hour drive from New Plymouth, Sam and Anika should be about half way on their eight hour drive here from Auckland and Beth and James should be on the train from Sydney to Kiama to spend Christmas with my brother and his family.
We're hoping to get to Children's outdoor service with a stable and real animals (Isaac will love it) but the weather is a bit rough at present. I'll finish with this years Christmas letter and Christmas photos of the boys. (It was written a few weeks ago so is out of sequence with the events of the blog)

It seems to be true that time races by once you get older and I really can’t believe that it’s already time to write the Christmas letter and get out the decorations. We are decorating the house a little early this year as Beth won’t be here for Christmas but will be visiting next weekend when we will have a combined Thanksgiving/Christmas lunch.
I have just ordered two enormous (four feet wide) Christmas wreaths with lights (I got them from my favorite on-line auction site, left over from shop decorations) we plan to hang them from the balconies to go with our light up star. It won’t cost too much in electricity as it doesn’t get dark till nearly 9pm and people go to bed early in NZ so we can turn the lights off by 10.30!
We’ve had several celebrations this year with Beth and Rachel getting engaged and the little boys, Paul and I having a Disneyland holiday then going onto UK for my mum’s 80th birthday. A little less turmoil than last year too, being settled into our new home and Isaac needing only one fairly minor operation.
A quick update on highlights for everyone is
Joe – still in South Korea teaching English, but in a different school. He has worked hard on computer programming for Paul’s internet anticoagulation business INRonline
Sam and Anika –in Auckland Sam has continued running (once his tibial stress fracture healed) and completed his first marathon (which included running across the Auckland bridge, then needing time off work as he couldn’t walk) he works for Bluebird foods inventing new muesli bars. Anika got a job doing psychological profiles for the personnel departments of various companies. She seems to be enjoying it and it means she’ll get more time off for Christmas than she did while working in a shop last year.
Beth and James – in Sydney. They got engaged in Palmerston North’s rose gardens last Christmas day. James had asked our permission the day before, so we had to try to keep it secret and only Hannah guessed. They came home to place-cards for Christmas lunch saying “Bride –to-be” and “Groom-to-be” The wedding is on April 16th 2011 with a wedding blessing in UK on October 29th (close to my dad’s 80th birthday)
James was accepted to do a masters degree (possibly changing to PhD) in ancient history at Macquarie university in New South Wales. They moved to Australia in March and luckily Beth found a job in a prestigious law firm. They will be spending Christmas with my brother Jon and his family by the beach.
Rachel and Adam – in Auckland. They have just got engaged on their fifth anniversary on being together. They may have the wedding on a tropical Island so that will be exciting.
Lily continues paid work in a department store ten hours a week and has a very busy social life. She loved the ball that our local Down syndrome association held and is very excited that a new Harry Potter film has come out
Hannah – lives in Palmerston North - first with us then flatting now with us again. Hannah continues her social work course, has bought herself a car and has a boyfriend Thomas who luckily likes small children
Noah is just finishing at primary school and is looking forward to wearing uniform at High School next year. He is growing fast and is now the same height as Lily. He continues to be unable to resist the urge to investigate and pull things to pieces and we alternate between being very crossed about what he’s broken and beign amused by his unusual way of looking at things
Isaac has big changes ahead too as he is now 5 and will start school next year. He has finally put on a little weight (still 12.6kg is pretty light for a 5 year old) and health wise has done well throughout the year. His only operation was to improve his squint and put in grommets. He will probably wear hearing aides next year.
Foster children – we had respite care weekends for J who we used to foster and for two little boys, we had two toddler brothers (aged two and a half and three and a half) who stayed for three weeks and brought us to our knees, then for three and a half months we had the beautiful Heidi (who graces our Christmas card) who changed from a terrified, frozen 15 month old to a cute and active 18 month old.
Paul – his year has been busy as ever with his job and away clinics and running INRonline. In May he went to the states as part of a competition run by NZ trade and enterprise and now a pilot scheme is about to start in NZ with 15 pharmacies managing anticoagulant control using Paul and Joe’s website.
Angela – having all the little children around has made me realize I’m not as young as I used to be! So we may be less likely to take in foster children but instead once Isaac starts school, I too will start school, doing some psychology papers at Massey our local university. Beth and Hannah both find this very funny and think I will be the mature student at the back of the class who keeps putting her hand up and interrupting lectures.

It seems that next year will not be boring either with
Hannah’s 21st and a Disneyland holiday in January
Beth’s wedding in April and
Beth’s second wedding (to the same man! – otherwise known as a wedding blessing) in October in the UK

Hope you all have a lovely peaceful Christmas and bright New Year

Tuesday, December 21, 2010

Christmas dance show

We had a great Down syndrome Christmas party at our house with about 70 people here (lots of different families to last year though) The Jorjaz dance group performed two numbers and tonight is their big show in front of an audience of 180.
The local free paper featured them (Lily on the right with the photo caption - Blissing out: Lily Harper is a natural performer) and there was also this typical Lily quote in the text
"Lily Harper who works at Farmers, has been with the group since its early days. She said Mr Martin, who took over from Georgia, is an awesome teacher.
"Everybody likes him, he's funny, plus he's really awesome at acting as well."
Acting is Miss Harper's other love and her current muse is High Laurie as Dr Gregory House.
Unlike Miss Harper, her boyfriend Elliot Cole is not a natural performer.
Miss Harper said she is the better dancer, but "he is my boyfriend so I have to encourage him."

Saturday, December 11, 2010

Christmas season arrives

Suddenly it's getting busy for Christmas with three events in three days.
Yesterday we went to the lab BBQ, tonight we have a special Christmas meal and party with our homegroup and tomorrow is the annual Down syndrome party here.
Last year we had 70 attend and hoping to beat it this year.
We have to take something different and Christmassy to the party tonight so we thought we'd play this wonderful Messiah clip from youtube. It brings tears to my eyes every time I see it and I notice it's at 17 million hits now!

Monday, November 29, 2010

kiwi Thanksgiving

We've just followed our new tradition of giving thanks for the children's birthparents on thanksgiving, and we also remembered the families of all the children we've fostered this year.
We were able to have a bigger do than usual as Beth and James are here from Sydney (this is instead of at Christmas) and some of James family came too.
We had twelve for lunch plus Isaac and 8 week old baby Malachi (James's nephew) and had turkey, ham and all the trimmings - including sweet potato and marshmallows (I used kumera which I think is the same as sweet potato - but perhaps I should have used orange kumera rather than white, and white marshmallows rather than pink which bled pink dye into it!)
James's mum Brenda had made pies for dessert, making a pumpkin pie with her American friend. The friend said that pumpkin pie is usually made by putting a tin of pumpkin pie filling into a ready made pastry case, but they weren't available in NZ so the pie had to be made from scratch.
It was a lovely time, all being together and encouraged us to clean the house too!

Sunday, November 21, 2010

Happier times

Rachel sent these lovely photos of her engagement party.

Sorry not to have blogged for so long following such a negative post!
Things have become much more manageable here now. Isaac is going to kindy every morning now in preparation for school next year and with Heidi gone this means I get a little time for myself some mornings!
My plan is to try studying again by doing some psychology papers next year at Massey (our local university) and I'm meant to be reading about psychology during these quiet times but actually I found myself addicted to the old TV series "West Wing" (I don't know how we missed it when it was on TV - it is probably even better than Boston Legal - so high praise from me indeed). I have now finished watching 7 seasons of 22 episodes each (I don't want to work out how much time that is!!) so can return to blogging and the general upkeep of the house (Joke!) and preparations for Christmas.
Beth and James are visiting next weekend when we hope to have a Thanksgiving/Christmas lunch with James' family.

Monday, November 8, 2010

What a week!

Packed week really - daughter Rachel got engaged, foster daughter moved on, my optician appointment said I might have early glaucoma, Lily's that she needs a cataract operation, Paul went for a busy few days and got food poisoning so badly he had to cancel his clinic and lie on his own examination couch all day, then give a very important lecture (with 30 people flying in from all over NZ) sitting down having eaten nothing for 24 hours.
We had a good relaxing weekend though, but this morning has started with 3 emails from trade me saying I (or could it possibly be the boy who played on the computer yesterday?) have pressed 'buy now' for three dvds and blue rays of Noah's favourite movie "How to train your dragon" (we don't even have blue-ray!). Lucky I have such a good sense of humour!!!

Tuesday, November 2, 2010

Goodbye Heidi

Heidi's goodbye went as planned. She spent all day yesterday with her new caregiver and this actually worked out well for me as Noah had an eye appointment at the hospital which I was able to take him too without any little children - just as well as they ran an hour late - we were there from 10.30 till 12.30 - he had drops put in to dilate his pupils and while we waited 30 minutes for them to work Paul came down and had coffee with us . Noah doesn't need glasses yet, but will be reviewed in four months.

When Heidi returned around 5 pm she was exhausted and grouchy and even vomited a small amount twice (behaviour we haven;t seen since she first came to us) we went through the usual bath routine which calmed her a little and put her favourite mainly music dancing songs on for her to dance to. She was really hungry downing two bottles and then falling deeply asleep by 6.30. I guess she was quite disturbed by the change in routine and people and hadn't been able to eat or sleep much.

This morning we dressed her in the new dress I'd bought her while we were in Sydney and all took her to the holiday park where her caregiver was staying. I managed not to cry until then but it was sad letting her go knowing what she'd been through before she came to us and hoping she'll be safe now.

This evening we're all going to go out to Pompeii Pizza together to celebrate being our usual smaller family again - I'm trying to make this a family ritual for the day foster children leave. The plan is for it to be positive but Hannah says "When people die you don't celebrate being a new smaller family" I argue that fostering is a bit different to bereavement - this loss marks the completion of our role so is a cause for celebration.

Monday, November 1, 2010

Rachel is engaged

Rachel and Adam two years ago on her 21st birthday
Another celebration in the family as Rachel phoned this weekend to say that on Thursday - their fifth anniversary of being together - her boyfriend Adam proposed to her.
The proposal sounds so romantic and to make it even more special when Sky City hotel (where they were planning a celebration weekend) heard, they were upgraded to a suite for free, with rose petals over the floor!
It was lovely to hear Rachel so excited and happy on the phone and she was able to give the good news to my dad in the UK on his 79th birthday as a special birthday present.

Rachel is now 23 and came to us when she was four and a half was adopted when she was eight and lived with us until she was 16. She had a very tough start to life with us being the seventh primary caregivers she'd had by age four and a half. I was told by one social worker that Rachel's family history was the worst the social worker had ever dealt with. Understandably Rachel was very reluctant to trust us (we had never heard of attachment disorder in 1992 as naive foster parents but Rachel was described to us as an unbonded child) and we had plenty of upset and difficult behaviour over the years.

I can remember first hearing of Adam five years ago when Rachel was in the middle of some really difficult circumstances and unable to hold down a job. He helped her out and has been a real stabilising influence on her since, quietly showing her how he patiently stayed with his job even when he didn't enjoy it, had a licence to drive his car and so on.

They now own a house together which they spend a lot of time decorating and Rachel has been in the same job for over two years.

I feel as though we were able to just about hold Rachel together for the eleven and a half years she lived with us, but now with Adam's help she has learnt to be part of a loving relationship and blossomed into the adult woman she deserves to be.

Congratulations Rachel and Adam!

Monday, October 25, 2010

Christmas card out takes

We have heard that Heidi will soon be leaving - possibly in just a few days (we have heard this before without it happening though) so we decided to take a few photos before she goes and thought as she looks so cute we'll include her in this year's Christmas card.
I bought some cute little Christmas outfits from trade me - Isaac's has a reindeer on and Heidi's has a holly decoration, so they wore those and Noah wore a red tie and we took 81 photos none of which were fantastic. Some were worse than others though! Thought you might like these out takes!

Thursday, October 14, 2010

feeding therapy philosophy

Another day of clinic visits yesterday for Isaac. It started with a hearing assessment for Isaac at 8.30am I realised this meant I wouldn't be able to get Noah to school and also that having Heidi present during the hearing assessment might no be a good idea - luckily Paul was here and able to get to work a little later bringing Heidi in with him.
The best bit was that I could say to Paul "I have to leave now, I have a meeting" which he often says to me leaving me with lots of children to organise.
I got to the hospital and Isaac had his assessment while Paul dealt with the children at home suddenly realising he didn't quite know how the morning routine went, the only minor issues were -
Lily nearly missing her bus as Paul didn't realise she had a watch that had stopped until she said "Is it 11.17 dad? When will it be 8.05?" at which point he realised it was 8.10 so she'd have to run

Heidi not having her hair done, (very fine black Maori hair that tangles everywhere) because Paul didn't realise I do her hair each morning

Noah taking his beautiful leather Armani coat (which I got from trade me) to school because dad just said "Get your coat" not "Get the old multicoloured jacket (that nobody is likely to want to steal)"

Anyway Isaac failed his hearing assessment as usual, his grommet has fallen out on one side and seems to be blocked on the other (although his ear does discharge on this side so it can't be totally blocked) and they suggested he gets hearing aides. One advantage of having more than one child with a disability is that we've been through this before with Lily, another is that as Isaac is under 18 unlike Lily he will get faster service and his hearing aides will be FREE!!

At 9.30 we had a meeting about the feeding clinic 'Kai time" it had said children weren't expected to attend but as Isaac was already at the hospital and as Heidi hasn't yet moved on as expected, I had to attend with two disruptive children. Heidi showed me she is now a typical 18month old (or maybe even a hyperactive 18 month old) when within the first ten minutes she had managed to climb into the therapists chair, find the breakable coffee cups, draw with pen on the walls, distribute all my handouts all over the floor and have a fight with Isaac.

We were asked to write down our goals for feeding clinic and then the therapist said we usually find most people have written "I want my child to eat fruit and veg."
This was the first inkling I had that our problems might be more extreme - my goals were "I'd like him to be able to take multiple swallows so he can learn to drink" and "I'd like him to be able to maintain or even gain weight" -Weighing 12kg at age 5 is way off the charts for typical children although it's still just on the 5th centile for children with DS

Then we were told "It's OK for your child to eat breakfast cereal in the evening" Well thank goodness for that as its the mainstay of Isaac's diet. The four mothers had to introduce ourselves and suddenly the difference in feeding issues became very obvious, the other children were 'picky eaters' not underweight, not unable to eat, never tube fed, not disabled, no history of muliple surgeries etc etc.

We were then told that Eating is essentially a learned motor behaviour and that 4-6% of the paediatric population with feeding problems will starve themselves.

This set off alarm bells as it is very based on the behavioural philosophy of feeding therapies rather than the self- motivation/regulation philosophy of Graz that I am trying so hard to believe in.

I am realising more and more that I am at the psychotherapy type side of the spectrum rather than the behavioural psychology side in much of my child rearing so I hope I am going to be able to cope with this clinic.

I guess really as a mum I will use whichever philosophy has the best result but I no longer believe that eating can just be learnt as a motor behaviour - the child needs to experience hunger so that some self-motivation come sin.

the real trouble is that if you want to get your child to eat by letting them get hungry you need a lot of support - if your therapists don't hold this view they're not able to offer such support.

Tuesday, October 12, 2010

Isaac's birthday

It's hard to believe our little boy is five!!
We know exactly what things he likes so bought him three books about animals. He had a lot of help opening them from Noah and Lily then Heidi wanted to play with the wrapping paper while Isaac read the book.
We also got a toy kitchen without being sure he would like it (I have a lot of toys in my house that are very popular with visiting children but never played with by my own children!) but actually it has four doors (rather like the aga in fact!) and Isaac loves opening and closing doors so it has been a hit. Heidi is also very pleased as it has a toy phone with it - it is so funny to hear this 18 month old little girl putting on a phone voice! (she has no words but great expression!)

Noah bought Isaac the Dr Seuss 'Happy Birthday' book from the Dr Seuss exhibition in Woodville but this is really for Noah. It was a lovely exhibition and the curator of the art gallery was impressed when he heard Noah naming lots of the pictures so came to talk to us. Noah is now convinced that he's met Dr Seuss!

We spent the day getting Heidi ready for an access visit for which mum didn't turn up - like the previous four, then this afternoon Isaac celebrated his birthday with a hospital appointment with the dietitian. Tonight Lily and her helper will make tea (I think it's pasta) and we have cake with five candles on for dessert.

Wednesday, September 29, 2010

school holidays

As always school holidays aren't going quite as planned.
On Monday I took Heidi (and Noah and Isaac of course at its the holidays) to meet 'nana' - the family member who lives 8 hours away who will become her permanent caregiver. I took various toys with me in the hope of entertaining our boys so I would be free to discuss Heidi. There were two adults and two little girls (aged 2 and 5 who are cousins not sisters so I'm a bit confused who they belong to) there and we had a good introductory meeting with Heidi returning to my side occasionally.
I didn't realise that the plan was for her to go and spend the rest of the day with her relatives, but luckily had a bit of extra food and clothes packed (no spare nappies as both Isaac and Heidi had already needed changing by that point!) so off she went and that gave me a bit of unexpected time to spend with the boys in town. - Noah was very pleased when we bought some junior meccano for him (I just have to disregard the bit that says age 4 plus as he's 11) and had an early lunch at Mc Donalds.
Heidi was returned back about half past four very exhausted, (this is not the optimum type plan for introducing children to new caregivers) Isaac had hardly eaten all day and had several dirty nappies, so they both had a bath and quickly to bed.
Yesterday I had to take all three children to the hospital as Heidi had a check up appointment for children in care. We also wanted to get Isaac weighed - except by that time he had barely eaten for 3 days and I wasn't so keen on seeing how little he weighed, but he was up by 200g and has now just passed the magic 12kg mark once again. Hopefully when he's well he will return to the 12.2kg he weighed last Christmas.
Heidi weighed 10.35kg (she is 17 months old compared to Isaac's 60 months!) so she has gained 1.4kg in her eleven weeks with us (900g in the first 4 weeks). The social worker was there for the appointment and was amazed at the change in Heidi - she is just a typical toddler now.
It was good to have a chat to the social worker as I was expecting as the relatives obviously did that Heidi would be going back with them at the end of the week, but it seems the approval process hasn't all been completed so the plan was for Heidi to spend 4 hours with them today and then they'd drive the 8 hours home.
We have a student nanny for two days so I said to Noah that while Heidi was out, the nanny could have sole charge of Isaac and Noah and I could go to the movies.
But now everything has changed
in the middle of last night's home group Heidi was sitting on my lap as she was a bit unsettled when she did an amazingly big vomit - oh our family does liven up homegroup -she repeated this at 2am and then took an hour to settle.
This means that obviously there is some kind of bug that both Isaac and Heidi have (and please don;t let it go through the rest of the family!) I managed to contact the social workers and 'nana' has decided to forgo her visit with Heidi and instead drive 8 hours next week to see her.
So now we're stuck at home all day with sick children - just what I love for school holidays!
Still we have the nanny again tomorrow and I'm hoping Heidi will be well enough to leave then so the nanny says she'll look after both Isaac and Heidi so Noah and Lily (who has Thursday as her day off) can come with me to see Despicable me.

Thursday, September 23, 2010

Sydney weekend

We had such a great weekend in Sydney with Beth and James.

We chose to be flying in some of the worst weather NZ has experienced - on our first flight the pilot said "I have now taken this plane as high as it's allowed to fly, so you will just have to put up with a few bumps and if you're from Christchurch as I am you'll be used to bumps by now anyway!"
The wind was so strong and against us all the way to Sydney so we arrived almost an hour late. It was a fairly bumpy landing and the steward then said "The pilots are really earning their money today!"
Coming back though the wind was in our favour and the flight only took 2 1/2 hours rather than the usual 3 1/2. The final flight to Palmerston was the roughest landing we've ever had and the stewardess made us all applaud the pilot and then her as she'd still managed to serve us half cups of coffee!

Anyway the weather in Sydney was lovely a good few degrees higher than here. We got a family three day pass for the monorail and went round it innumerable times - Paul and Noah the most as they ended up doing a quiz about the monorail stops (On the last night this meant I took Lily and Noah back to the hotel while Paul continued a monorail journey to see if her could get the final clue!!)
We went to Beth's law office on Martin Place which was quite breathtaking, very plush- reminded us of 'Boston Legal" then we had tea in the food court underneath Myers - I could remember this from 15 years ago when we lived in Sydney for a while.
On Saturday we went to the fish market on the light rail (included in our monorail price) then went to Paddy's markets where I bought Beth a "Jimmy Choo" bag - the real Jimmy Choo shop is right near her office (along with prada, Gucci and the like) and the version I bought was a lot cheaper but with a worse quality zip!! - I cannot actually believe the market is legally allowed to sell rip-off merchandise, in Singapore markets they even hide some of the stuff away.
In the afternoon we went to the wildlife park at Darling Harbour where Beth informed me I was still able to embarrass her as I sang "Never smile at a crocodile" when I didn't even have Noah or Lily beside me!
We went to a lovely Darling Harbour restaurant called pancakes on the Rocks for tea,. Unfortunately we had to queue a long time for a table and we could see Lily wilting with tiredness in front of our eyes so we had to cut the visit short and miss out on the pancakes.

On Sunday we caught the train out to McQuarie university, where James studies and had breakfast at their fantastic local mall (which we again remembered from 15 years ago because there is an ice-rink there) then walked to their apartment. it was a lovely place and we got a quick glimpse of Beth's wedding dress which is beautiful.
We caught the bus back to Sydney centre and then went to Wicked which was fantastic - so many layers of meaning. James even thought it linked to his philosophy studies. It was about being different and how the way people are treated impacts on their choices, some of the words were fantastic - one song towards the end (click to hear it and read lyrics) seemed very applicable to families who have a child with DS, could be a new title song for our welcome pack!

"I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good"

Now back home I am rushed off my feet catching up with housework etc. Hannah has said she will not look after two pre-schoolers again unless we pay her a million dolllars!

Heidi has changed into a typical toddler-very demanding and touching everything and moving stuff from one place to another. She is very interested in phones and pretends all remote controls etc are phones. She gets into the garden (which is very muddy at the moment) if there is the slightest gap in the sliding doors. She's becoming very picky with food but will eat most things later from the floor!

She is about to meet the family member who is being approved as her carer so we will probably only have her for another week or two.

Wednesday, September 15, 2010

hectic days

I got Isaac to kindy this morning to find all the other children dressed in pyjamas - I had managed to miss the notice about the kindy dress-up breakfast!
Life has become a bit hectic (when isn't it?)
Last Monday I got a letter saying pub charity had approved the application of the local Down syndrome association to attend the DS national forum which is held every 2 years. Unfortunately the forum started that Friday!! I had a hectic time ringing round everyone who might be interested offering them an all expenses paid trip to Auckland. Finally I went (leaving Paul at home alone on his birthday looking after 4 children!) with my friend who has adopted a little boy who is now aged 2.
I met up with my friends form Auckland and was able to introduce my two friends with adopted children to each other which was lovely.
I also got two nights undisturbed sleep (strange that luxury for me now is to get to bed by 10pm not chat till late) and got enthused again with some DS ideas.
The speaker from e reader pro (a special reading programme for children with DS) was there and inspired me to make some resources to teach Isaac to read, I bought a CD full of workbooks specially designed for Children with DS (precision academics) and now I'm mulling over whether Palmerston North could become a centre of excellence for Down syndrome in NZ and offer Down syndrome health clinics - Paul could fairly easily be persuaded to be the physician for these.

In a few days we're off to Sydney to see Beth and we just discovered that the season for 'Wicked' has been extended so we've bought tickets - all very exciting.

Thursday, September 9, 2010

flooded river

We live right by the river although apparently we are not in a flood zone and the council tell us that most of Hokowhitu and the central square of Palmerston would flood before us.
Anyway after torrential rain on Monday the river flooded its banks and at its highest covered the grass all the way to the stop banks.
At about 2.30pm on Monday afternoon it came over by the little fishing platform then you could see the water actually moving across the grass. I went to school for Noah's IEP which lasted just over an hour and came home to see the river completely flooded (this was much more exciting than the IEP which seemed to be exactly the same as his last one!)

lots of people parked along the road to take photos and tell us this was the highest the river had been since the floods of 2004 (when we'd been living in Auckland)
The water was really wild with whole trees being washed along.
During the night they opened the flood gates (they had to get all the farmers whose fields were about to flood to move their stock first) and over Tuesday morning the river went down as fast as it had risen.
The photo of Noah in his suit shows what the river is usually like compared to the flooding.

Sunday, September 5, 2010

birthday photos

I've finally sorted a few photos - Lily's birthday last week and Isaac and Heidi in the garden

I am still enjoying dressing Heidi like a little doll in all my second hand shops finds. I think it"s a Libety lawn smocked dress - and look at the cute socks and shoes
Today is Rachel's birthday and NZ father's day. We were woken by Paul's family to see if we were OK as the British news had been about the earthquake devastation in Christchurch. We hadn't heard of it till then and hadn't even felt the earthquake, but it is very bad, luckily no-one has been killed.

Tuesday, August 31, 2010

Lily's birthday

Lily turned 22 on Sunday.
The only thing she really wanted was a whip (she is into Indiana Jones at the moment!).
I couldn't bring myself to give her one but instead got the Indiana Jones game for the Wii where she can use the controller like a whip.
She wasn't really very impressed at first but now she's played the game a few times she's getting to like it.
We went out to lunch at Aqaba (one of Palmy's nice restaurants) and luckily it was only as we were leaving (and also luckily for me it was Hannah carrying Heidi) that we found out that you don;t need to use as much lactulose for ordinary children who are constipated as you do for those with Down syndrome.
Like every mother I know of a child with Down syndrome I keep a big bottle of lactulose on hand, so when Heidi was constipated, before thinking of anything else I just added a slug of lactulose to her morning bottle.
I think the medical terminology would be that "it had good effect" and we ended up finding all the plastic bags in the car and changing her so that she travelled home wearing only a nappy and a cardigan!
We also discovered that Heidi has been picking up some of the sign language we use with Isaac. I was holding her in church and noticed her slapping her thigh (this is the NZ sign for dog) only then did I realise the vicar had just said something about "God"!

In the afternoon we went to an afternoon tea organised by the Down syndrome association, Paul stayed home and realised it was the first time he's been alone in this house!
Hannah babysat so that Paul and I could go to the 5 O'clock service where there was a singing group "Sons of Korah" who were excellent singing psalms - it also meant I now have a present to give Paul for fathers Day or his birthday as they were selling CDs.
We ended the birthday day by watching the original movie of Batman. This is such a spoof, but Lily and Noah enjoyed it absolutely seriously and now if we want Noah to do anything we just have to call him "Robin"!

Monday, August 23, 2010

maybe winters ending

Its light by 7am now which makes a big difference to the ease of getting out of bed in the morning. It also means its still light when I give the little ones their bath in the evening.
We've even had a few days of playing outside (although mostly very muddy) and today I've got Isaac back to kindy as he is over his cough and cold.
Unfortunately he is hardly eating anything and at kindy this morning the teacher said it looked as though he'd lost weight.
We've decided not to start him at school for his 5th birthday after all as he is so fragile and the school teachers felt he was not ready.
Instead we are trying for an intensive care regime to try to up his weight and I am trying to steel myself for a play picnic each day (this is the main therapeutic time at Graz where children are allowed to explore food however they like) we have held 3 playpicnics now in Lily's bathroom with the bath ready run to pop Isaac into.
He will take a bit of various foods and will pick up a bottle and pretend to drink letting the fluid pour all down his front but he doesn;t eat big volumes,
Heidi joined in too yesterday and was delighted to be able to finger paint in custard!
She has been quite unwell over the weekend with a high temperature and cough. At one point Paul said to me "She's not really sick if she can make this much crying noise" He is mainly used to patients who need admission to intensive care for chest infections though so I said "Don't just think of her as a doctor but as her caregiver."
Anyway he kept me calm and he was right she recovered easily and is back to her usual self today.

Wednesday, August 18, 2010

weekend with Sam and Amika

Sam and Anika came down from Auckland on Friday then back on Monday so that Sam could run the half marathon.
We watched him from our balcony and he cruised past almost effortlessly to our great applause - the route went past our house twice so we were able to cheer and embarrass lots of people! He finished in 1 hour 37 minutes so was very pleased with himself. We invited Isaac's support worker from kindy and her son to cheer with us as her husband was also running - he has run lots and lots of marathons and at the age of 54 still was a long way ahead of Sam.
Yesterday two of our church home groups had a combined session - a party to say goodbye to someone emigrating to the UK. I was asked if it would be easier for us to have the party here so we wouldn't need a babysitter and when I enthusiastically said "yes" I did believe it would be. However cooking a ham, roasting potatoes and looking after two pre-schoolers with colds who spread food over all the floor made me wonder how I could have been so silly. But in the end it was great, our house is lovely for entertaining and we dug out all the English things I could find to make a display - which included Noah's world cup pyjamas,a pot of marmite, some Ready Brek, a Noddy and Winnie the Pooh toy and some English currency!
Someone brought a Guinness (technically Irish rather than English I guess) cake made from Nigella Lawson's recipe which was fantastic and there was plenty of food left over for our tea tonight!
Today Heidi was really hot with a nasty cough so her social worker cancelled her access visit, Isaac was still a bit unwell and hardly ate anything and it poured with rain most of the day. I got to school this afternoon to find that Noah had been sent to time out twice today for punching someone and for disrupting his music group and then at four o'clock this afternoon Heidi made it an even more miserable day by vomiting a load of milk (more like cottage cheese) all over me. I decided Paul ought to be informed of all this at work and he managed to get back home soon after five and help out!!

Tuesday, August 10, 2010

a good night's sleep

One of the benefits of parenting two pre-schoolers at my age is that I'm always ready for a good night's sleep! Like my years as a junior doctor I realise that sleep is the ultimate luxury, coming soon after breathing eating and drinking. I love to be able to go to bed soon after nine and don't do well at all if I'm up after eleven. Last night (Monday is our date night when Hannah baby sits) Paul wanted to go to a movie that finished after eleven but instead I made him change to a shorter one so we could be home soon after ten - we saw Killers and it was so funny I laughed out loud in the cinema (this is very unusual for me) They were advertised a new film which at first I honestly thought was called "Eat, sleep, love" - it's actually eat, pray, love.
Paul was away in Australia for three days last week so the need for sleep became even more intense as I had to manage mornings alone - I tend to have a shower think -"Oh I feel just lovely and I'm all ready" - then remember "now there's three more to dress!" (Noah does dress himself but if I don't get the clothes out and tell him which order they go on then he ends up in very odd assortments!
At home group last Tuesday I had been coughing my way through he evening. At the end everyone said "We won't stay for coffee, you sound like you need a good night's sleep" and I fell into bed by ten and slept without interruption for eight and a half hours. A week later and I still remember it fondly - most nights we are woken at about midnight by Isaac falling out of bed (we are trying him in the tiny bed that Paul made from a cot)
then we're woken at about one by Heidi crying (she will only settle for me but is gradually taking less time to settle) often around 3 or 4 by Noah sneaking downstairs to watch TV and soon after five by Isaac waking up and needing to come into our bed when we can all hopefully doze for another hour or so.
We turn the radio on soon after 6.30 and at 7am they have a bird call followed by the pips and some music. Isaac and Heidi love to bounce along to the music to start the day, then Paul makes our morning drinks and a bottle for Heidi and we start the school preparation rush.

Isaac has now started morning kindy and yesterday we had a meeting about starting school - they've decided he doesn't need a story writing book! He will do four mornings a week to start and for one term Noah and he will be at the same school. Then after Christmas Noah will move to the secondary school that Lily went to which we can see from the back garden. They have kindly agreed to take him on a year early and his primary school is keeping him one year extra at the moment so he can avoid the NZ custom of spending two years in an intermediate school.
The weather is finally brightening up and the children get to play occasionally in the garden and get very muddy.
We've just returned from a long hospital visit (3 different appointments for Isaac, getting weighed in paediatric clinic, audiology and dietitian) Heidi has managed to gain 900g in 4 weeks with us, but Isaac unfortunately has lost 150g so he's now 1.8kg less than his highest weight. He also has a moderate hearing loss and it seems his grommets are no longer working so may have fallen out. Combining this with the usual down time I feel after school meetings when I realise how behind other kids Isaac is, and I guess things aren't looking good for Isaac. He doesn't seem to mind though and once again I realise all I have to do is follow my children's' example and I'd deal with life much more easily!

Wednesday, August 4, 2010

Isaac's count down

Isaac's ORRS application is now in with everyone pretty sure he should get ORRS. As is policy for the application it doesn't mention he has Down syndrome except where they managed to slip in "His brother Noah has Down syndrome too"!
I have dragged my feet over it but next week we are changing to morning kindy 3 hours on Monday and Thursday and 4 hours on Wednesday. Isaac also starts his school visits - 4 Friday afternoons and then 3 Thursday mornings - this Friday afternoon he spends one and a half hours in the school library learning about the alphabet.
So looks like today and tomorrow are some of our last slow at home together days. I am full of cold (again) so we'll just have a quiet time together (with Heidi stopping it from being too quiet as she continues her dramatic development and climbs onto tables, slides off the bed and attempts to get down stairs!)
He seems entirely too small for school. It has been good having Heidi here so we can see there are children smaller than him!

Thursday, July 29, 2010

Kapahuka Noah

Noah takes part in his school kapahuka group learning about traditional Maori dance and singing. He came home after kapahuka, looked at Heidi and decided to teach her about her heritage. I said "That's a good idea, sing your songs to her." But he had to disappear downstairs first. He went to the dressing up box and came back up dressed in a pirate hat and striped T-shirt and said "I am a mouldy lady" - he wouldn't be persuaded that the word is Maori (actually the the pronunciation is like mouldy with the 'd' changed for an 'r')
Luckily Heidi didn't seem to find it racist or offensive but rather enjoyed joining in with Noah's songs!
Today we went to ABCD group and six children with DS were there.
It is such a supportive group, I will really miss it when Isaac starts morning Kindy which he will do in the next few weeks to get him ready for school. Music time was great and it was wonderful to see how much Heidi enjoyed herself. It was also quite reassuring to see that at this group her usual group behaviour changed somewhat. She preferred to stay close to me and steered well clear of the only man in the room. This is in contrast to her usual enforced gaiety and arms out to everyone, so maybe just slowly she is beginning to bond to us.
Of course we are beginning to bond to her too. (Even Paul thinks she's cute although she won't go to him) Already we know it's going to be hard when she leaves.

Friday, July 23, 2010

Heidi took some steps

Little Heidi is making immense progress. I am so used the the slow planned and 'hard worked for' steps that children with Down syndrome make that she seems amazing - although according to the book on baby care I got out the library (havigng forgotten how to look after babies!) she is a bit behind.
She took about four steps in a row yesterday and of course wouldn't repeat them when I got the camera.
We stood there applauding and Isaac looked at us as though we were crazy "I can walk and you don't clap me!"
She investigates everything - the photo is her amazement at he tumble drier. She also climbs stairs too fast.
We just need her now to adapt to Paul - she still literally shakes with fear if he comes close to her.

Wednesday, July 21, 2010

toddler havoc

Our foster baby seems to be becoming a cheeky toddler - as soon as she feels really safe she is off exploring everywhere. She can't quite walk but crawls very fast - she made it all the way up our stairs as I was answering the phone yesterday. She has managed to work the photocopier and screw up lots of photocopier paper. I thought our house was baby proofed but she showing me what's lacking.
This morning I was dressing her on the bed in the spare room, turned my back to find her a cardigan, heard a crash and she'd fallen off the bed onto Hannah's "Ab circle pro" (if you are thinking of buying one of these be warned they take up lots of space and are very inconvenient!). She screamed and immediately developed an egg on her forehead - this is of course an access day so it has to be explained to her social worker and mum.
She'd recovered in a minute or two so it obviously looks worse than it is.
Heidi's security is very fragile though, as soon as the situation changes at all she's on high alert, people coming into the room frighten her and she's still very wary of Paul. She let him hold her for a few seconds yesterday but today was back to crying and running to me if he came near. He even had her bottle to offer her today but she just cried when he offered it to her. Every foster child we've had has been a bit wary of men but not to this extent.
Isaac is just beginning to come round a bit, he stroked rather than scratched Heidi this morning and even offered her a half chewed cheese ball!
Noah is rather taken with her especially as he fed her half her bottle yesterday. She finds him quite a novelty as a male who's not frightening.
Heidi likes Hannah too as her voice is similar to mine. Hannah moves out on Sunday though so we'll have to get used to life without all the support she offers the family.
She is only moving to the centre of town and intends to come back for quite a few meals and to care for the kids to get their carer support money (In NZ children with disabilities tend to get around 21 days a year of 'carer support' this is basically babysitting money of $64 a day - 24 hour day it's not great pay - which is paid to a carer so mum can get a little time off) So I hope we'll still see a lot of her.

Sunday, July 18, 2010

clinging baby

all the time she's awake baby Heidi wants me to hold her. I can do a lot of things with one hand but not everything!
Isaac is of course very jealous. He had Paul holding him in church today which he usually loves, but instead kept holding his arms out to me. I tried to give Heidi to Paul but she just screamed.
Last night I put her in her cot to sleep and came downstairs for my pizza even though she was crying. She cried herself into a distraught state so I went back up and she'd cried so much the bed and her were covered with vomit (time to bring in Paul!)
Then I remembered the social worker mentioning (among the horrendous other history) that she had been left alone for 9 hours one day. SO I guess being alone brings real thoughts of abandonment for her and I now have an excuse to leave all the housework and sit on the bed while she falls off to sleep.
I so hope the baby sling I ordered from trade me arrives tomorrow!
I have just discovered that sitting her in a high chair in front of a praise baby DVD also keeps her happy for a while - long enough for me to type this post with two hands.

Thursday, July 15, 2010

pretty in pink

Our little one is here and looks lovely in her pink babygro and bobux shoes.
She clings to me which is wonderfully rewarding to me although I know it's just because she's frightened and needs someone. At the same time she scratches quite viciously = a great example of disorganised attachment - she drew blood scratching her social worker.
It won't be long before the novelty wears off of having to type one-handed as she screams if I put her down. Meanwhile we'll have a blissfully boring day of cuddles, milk and sleep.
She is tiny, her little hands are so cute and thin (mind you I'm used to the chubby starfish hands of DS) - hope you like the photo

Wednesday, July 14, 2010

baby girl Heidi

The social workers are bringing round a one year old baby girl in about an hour. It is about 20 years since I had a baby girl to look after so I am really looking forward to pink, pink, pink!
We heard on Monday that she might be coming so I spent a lovely time yesterday going round some second hand shops choosing cute girly clothes (the four boys I had with me - Noah Isaac and 11 and 13 year old brothers I was looking after while their grandma worked- didn't seem to enjoy it quite so much!!)
We know the baby can't walk yet but don't know much else about her except that she goes to people very easily - far more easily than a baby of that age should.
Paul is trying to remind me of the stresses the last two toddlers caused, but before she's here we can just dream that this will be a cute needy child ready to soak up all the nurturing we have to offer.
Noah has helped Paul move a cot into our bedroom and I've dug out the double pushchair, the baby car seat and baby milk and bottles. I think I will call the baby Heidi in this blog (this is actually not her name in case you were surprised at a Swiss name in NZ!) after one of my childhood heroines.
I can not imagine just how scary this move will be for baby Heidi, I am trying to think of calming, nurturing things to do when she arrives. I need to find Isaac's praise baby DVD and some nice scented baby bath then I think we'll have a quiet few days at home so she has a chance to get used to us and recover from her injuries.

Monday, July 12, 2010

Wellington weekend

We just livened the school holidays up with a weekend away with the boys staying at the holiday inn in Wellington. (We may be about to liven things up still more as we've just heard about a baby girl who needs fostering but we'll wait and see on that)
It felt like a good break much longer than a night.
Lily didn't want to come as she had her High School Musical dance group and she stayed the night with her boyfriend (and his family!) instead.
We went to the Weta cave and saw a few of the bits from Peter Jackson's movies - this was much more fun for Paul and me that the boys so we didn't last long there - plus its only a small place.
Then we went to the Zoo. It was probably one of the coldest days of the year but at least not windy or raining. The boys were able to feed the giraffes which they both loved, they showed less interest in the tigers and lions though and search as we did we couldn't find any zebras (which Isaac loves) even though their website seemed to show some.
We had a swim at the hotel (and I moaned and moaned about my heavy cold and made Paul do all the work) then went to find a great pizza take-away - pizza pomandero which was advertised in our guidebook.
Next morning there was a doctor Dolittle movie on Sky and Isaac was entranced by the talking dogs. Then we had an enormous breakfast as part of our hotel package and walked down Lambton Quay (via a great magazine shop and Borders) to the cable cars. We had lunch at Kircaldie and Stains (which was surprisingly cheap) then drove straight back to Palmy for a special evening service at church where Daniel Rodreguiz was singing.
All in all a lovely weekend and it means we don't need to do anything today but let the boys rest!!

Thursday, July 8, 2010

cold school holidays

The winter school holidays often seems to have the kind of weather where you just want ot wrap up warm and stay home.
Luckily Noah and Isaac are happy to do just that, so I can sit and nurse my cold and feel sorry for myself.
Yesterday the boys didn't even get bathed and dressed till lunch time! Hannah is back for Australia and bought us all some lovely presents along with birthday presents for me and Noah from Beth and James. I got a lovely glass apple to add to my collection which they had bought in Berry while they were visiting Jon (my brother) and Bev. Noah has some great toy story games - he has just got the confidence to try the Wii game for himself after sitting and watching Lily play it yesterday. He has finished the first level himself and is SO excited - it is a real first for him to play a computer game properly.

He also got a Buzz board game where Buzz races round knocking off players tokens. It caused some amusement for members of our church homegroup that meets here as we discovered that Noah had been trying to set up the game during our group (while he should have been asleep) but had a few of the stickers in the wrong place - very interestign to see who wanted to ge the stickers totally smooth and in the right place.
Today we got it all made and luckily all the bits are still there (even if we had to unlock the garage to find the middle bit which Noah had taken into the garage to try to find a screwdriver to insert the needed battery)
I can report that the game is much faster to play than mousetrap and it is possible to cheat a bit by having stickers not properly stuck onto the tokens so they don't drop out when they should!!
During the writing of the last paragraph we saw the opposite of Noah's delight at playing the computer game as the control no longer seems to do what he wants it to! I may have to go and intervene!!

Thursday, July 1, 2010

Isaac the lightweight destroyer

Isaac may be tiny (87cm and clothed weight 12.2kg at nearly five) but he can inflict massive damage on the house. He has just pulled the game of 'mousetrap' (see my last post) on the floor and whenever he can gets into Lily's room and pulls out all her DVDs.
He is quite a different boy now compared to the four years he was tube fed. No more pain and a real cheeky character - he loves to pick up a toy (usually a toy animal) and just carry it round and round the house.
We still worry a lot about his feeding, trying to find ways to slip in calories or teach him to drink, but he is content enough with just the small amount he eats and has no desire to learn to drink. He learnt to eat jellies in the UK which is a great help with getting in fluid and sometimes surprises us by eating something new like in these photos where he's trying ravioli.

It was a relief at paediatric clinic today that although he hasn't gained any weight since December and has lost 2cm in height (that was actually because they measured him standing rather than lying down but it give a better weight to height ration so who cares?) the paediatrician doesn't think he needs a naso-gastric tube or other intervention. He has prescribed some nutrini drink that has 1.5 calories per ml which I think I can mix with weetbix so hopefully that will help.
Isaac turns five in October so his early intervention teacher has started his ORRS application (this is the school funding for children with special needs in NZ). We were talking about his progress at his kindy IEP and once you start thinking about ORRS you suddenly realise just how behind your child is. No toilet training (what a joke he only wees about twice a day anyway as he doesn't drink!) Only uses three words spontaneously to communicate - 'up', 'walk' and' dog', can't recognise his name on the board etc etc. Still he is our cheeky well loved boy - we just think of him as a toddler really.
I know some parents choose not even to read their child's ORRS application - I'm not like that, I want to help write Isaac's just to be sure he gets funding - but it's still tough, even after already doing it for Lily and Noah it's still hard to think about everything your child CAN"T do.

Noah doesn't 'hit' puberty

Yesterday was Noah's 11th birthday - he was expecting to 'hit' puberty then, like one of his books suggests. Unfortunately (for him not for me - I want him to stay my little boy) he did not wake up with a voice gone squeaky and needing to shave! That aside he had a good birthday. It was a bit of a quiet start as Paul was in Auckland (for the NZ trade and enterprise awards which he didn't win) and Hannah was in Sydney with Beth. I'd been up in the night with Isaac so when I woke at 6.15 thought I'd allow myself a few more minutes to doze - next thing I knew it was half past seven, so a big rush downstairs to open his presents before Lily left for work at five past eight.
I'd tried to explain that going on holiday to UK and Disneyland really counted as birthday presents but Noah wouldn't believe that so I ended up getting as many little presents as I could for him then buying some others in the toy sale that only started that day. This meant presents in the morning and at tea time which suited him well.
Eleven is a great age to be regarding making a number cake - just cut a rectangular cake vertically in half and there you are! Paul also picked up some Dunkin Donuts on his way back from Auckland so Noah was very happy.
He especially likes the mouse trap game and the watch we got with money from grandparents and the book of mazes he got from Sam.
I am already remembering why I held off 'mousetrap' for so long - It is very fiddly to put together if you have poor fine motor skills (and leads to angry frustrated outbursts) there are loads of little pieces to loose and the game takes ages to play! Still it kept Lily and Noah occupied for about 40 minutes this morning and I now have to leave it on the table for them to finish tonight.

Monday, June 28, 2010

winter's here

Some photos of the boys in Disneyland to cheer us up a bit as we're now into the middle of grey, wet dismal winter weather.
This visit we spent some time in 'Toon Town' and the boys loved going round Mickey and Minnie's houses. Noah was really taken with the dishwasher in Minnie's kitchen and wanted to just sit on the floor watching it for ages!
This weekend has been real rainy weather. On Saturday we got up early (helped by the fact I'm still jet lagged and waking at 5am) to take Hannah to the airport so she could go to Sydney to visit Beth
This was the first time for Hannah to travel alone so she was a bit apprehensive.
When we got to the airport there were two fire trucks outside and everyone had been evacuated and was waiting outside the terminal - the boys thought it all very exciting especially as it wasn't yet light and the flashing lights lit everything up.
Obviously it was nothing serious as we soon got inside and the check in for Hannah's flight was rushed through. They did say they'd be a few minutes late which might affect international transfers so we were a little concerned as Hannah's itinerary only had one hour and five minutes to change terminals and clear security and passport control. We watched her flight leave just before 7am and went to McDonalds for breakfast as a treat for the boys - we also found it was a great time to do our supermarket shopping. We then got to the Warehouse just as it opened (another fantastic time to shop) and treated ourselves to the DVD of 'The Wire' as they had 25% off all TV series and I had read while in the UK that this is the best series ever made (We watched episode one last night and could hardly listen for the bad language or understand the plot but we'll have to persevere as we've bought 2 series!!)
Soon after we got home we got a text from Hannah to say there had been fog at Auckland so they'd landed at Hamilton. There were no seats left on the next Sydney flight from Auckland so air new Zealand rerouted the four people in her situation through Rotorua which had a Sydney flight leaving at 5pm. She went in a mini-bus via Tauranga airport then had five and a half hours waiting in Rotorua for the international bit to even open - Rotorua is an airport as small as Palmy with only occasional international flights. So Hannah's first experience of travelling alone led her to experience 3 NZ airports that I've never been to! Still she's safe in Sydney with Beth and James now and has given James all the England World cup paraphernalia we brought back with us (Unfortunately not bringing any luck to the England team though!)
Yesterday Paul has a conference in Christchurch for the day, so I was at home with just the trisomy tribe. We decided to stay in all day and have a pancake brunch rather then a full Sunday dinner. I watched the last of the series of 'Brothers and Sisters' that we took to the UK with us and then found some more episodes online. Noah and Lily played on the Wii together and it was a good stay at home winter day.

Thursday, June 24, 2010

boys and grandparents

I've finally sorted some of our holiday photos, first my dad in the church grounds with Isaac and Noah, than with my mum and dad in their sun lounge with Noah very reticent to hand over the card to my dad. Paul's mum with both boys and Paul's dad with Noah in their lovely new purpose built old people's flat.