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!

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.

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.

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.

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.

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.

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.