Happy World Down syndrome day

Today the 21st day of the third month is a reminder that people with DS have three copies of chromosome 21. Down syndrome international have put together a video of people with Down syndrome from 45 countries and it is our Noah (and Hannah's boyfriend Thomas) who represent NZ - you can see the video by clicking here.
We've just had a great w/e seeing Beth who was over here for a few days to be bridesmaid to one of her friends. We've sorted out a few more details for her wedding which is now less than 4 weeks away! We also went to the dedication of Malachi (Beth's nephew to be) which was lovely.
Joe gets back from Korea in under 2 weeks and will see our house for the first time.
I am finding it very very hard work being back at uni after 30 years but I'm enjoying it. I have realised though that I was not at home doing nothing as I believed. it is very hard fitting in uni round the kids and tomorrow I'm going to have to miss a lecture as our babysitter is sick.

Marshmallow woman

Paul and I just had a weekend away together in Taupo to watch the ironman that my brother Jon and Rachel's brother-in-law-to-be Josh were in.
Jon was hoping to finish in under 12hours (his last one took just over 13 hours) and did easily
Josh is a 28 year old fire fighter doing his first iron man and finished eighth in his age group in 9 3/4 hours - a fantastic achievement

I high-fived Jon just as he approached the finish line and he then got terrible cramp in his legs and could only stagger forward so I felt rather guilty! It was quite good for him though as it meant he was really singled out by the commentator and got huge applause as the commentator said "Keep going Jonathan and in a few steps you will be an ironman!"

It poured with rain the whole day and meant Paul got a new pair of shoes - waterproof asics sneakers - he had to buy a pair of socks first and wring out the others.
I have decided I am as far from an ironman as it is possible to be and have renamed myself 'marshmallow woman" as I remarked to Jon I noticed nobody did the over a mile swim wearing a giraffe patterned swimsuit like mine or doing breast stroke with their head well out of the water, also they all used 4 kg racing bikes not a trike like I have.
It is hard to believe that there are over 1000 people who think it is worth while driving their body to the limit and swimming in lake Taupo for over a mile, then cycling for over 100miles (that's longer than the round Taupo race) then running a marathon.
For that they got a T-shirt and a towel, but if you took over 17 hours you didn't even get that or hear "You are an ironman"

It was a great w/e though, in spite of the weather and lovely to meet up with Rachel, meet Adam's family and see Jon and my nephews Jack and James. Time away without children is always wonderful, sitting in a restaurant without anyone knocking anything over, not having to stop children going onto the ironman course, recovering very fast when tired as there were no grouchy children to pacify.
It was good to get a warm greeting from them as we returned home - Isaac trying to say "mum" and "dad" and hugging us tightly. Noah proudly telling us he had made 100 photocopies of a page from his book (the printer now says out of toner). Hannah racing to leave as she'd had the kids all weekend. I appreciate the family much more after a little break!

Earthquake and starting Massey

My second day at Massey University and two minutes of silence to think of the victims of the Christchurch earthquake.
Such such a tragedy - watch this very moving footage set to the national anthem
I am so proud of the New Zealand spirit though and how people have reacted. This may be the push for us to become New Zealand citizens.

it is really interesting to be studying again after a 30 year break. It is wonderful how text books now try to help you learn and I am loving having time out from family just for me.
Isaac only goes to school from 8.50 till 12.30 but I've managed to arrange it that we only need a babysitter on Tuesday.
I am studying psychology, - research methods, cognitive psychology, biological psychology and abnormal and therapeutic psychology over this year which works out as half-time of a usual course.
I'm hoping it will integrate lots of what I've learned through my life experiences (with disability and adoption) with psychological theory and brain science.
Hannah has been great showing me round, taking me to my lecture theatres and I got to meet two of my friends who are lecturers and have a child with Down syndrome.

Noah and maps

Although Noah doesn't have an official diagnosis of autistic spectrum disorder he has lots of autistic type behaviours, he also had infantile spasms as a baby which is strongly associated with autism. We brought back a fantastic DVD from the states which hasn't yet come to NZ called "Temple Grandin" it is about a very intelligent woman who is autistic and is able to explain many of the behaviours and misunderstandings that autism causes.
So as a toddler and younger school child Noah was fascinated by bead toys (we especially didn't buy one for home until this obsession was lessening, as it meant he was always quiet in the paediatric waiting room which had a big bead set!)
He also used to like strings to trickle through his fingers and loved us to arrange the hosepipe round the garden so he could run along the path.
The behaviours have now changed into looking at maps and mazes and turning on the hosepipe and wetting everything whenever he can, but the past few days the behaviours have led to some difficult issues (for us - never for Noah!)
On Saturday I let him sit with the ipad looking at Google maps - he likes to find a long road and just keep following it along. I didn't check on him for too long a gap and so he got bored and peeled off and screwed up the life time guarantee Zagg screen shield that we had specially bought while in America and paid to have put on (a very fiddly job and a wait of 24 hours before using). So we were left with an Ipad that we couldn't let the boys use - and Isaac (who actually talks a bit when he's using the Ipad) was suffering as much as Noah.
Next morning, Sunday I decided to give the boys a bath before church and was puzzled that the water was only trickling out the tap. Paul had the bright idea that maybe Noah had turned the hose on and went downstairs to check. He found Noah had indeed turned on the hose which he had put through the garage window so the garage was slowly flooding. Thank goodness we discovered it so quickly, with the only damage being a few damp Christmas decorations!
We got to church, without of course the Ipad to keep Noah quiet (he doesn't go to the chidren's programme because of his behaviour) and luckily the pages of the Bible were just the right consistency for him to run through his hands (and it looks much more holy than the telephone directory his other book of choice!)
I managed to find a Zagg screen cover and an otterbox case for the Ipad on trade me so was very pleased (both these are essentials for using the Ipad for children with special needs and both are hard to get in NZ) and Noah was supposedly punished by being told he couldn't use the Ipad for 2 weeks (I hardly know why I do this as he learns nothing through consequences - it just makes me feel I am at least making some attempt to impose discipline)
Today Noah hadn't arrived home from school 25 minutes after it finished (we can see the school over the back fence and it is less than a 5 minute walk). I knew he would be thinking about maps and walking along routes he had planned but still got quite worried, phoning the school and Paul and sending Hannah out to search the roads for him. A teacher found him by the main school entrance, but when we talked to him he had crossed a main road twice and gone down an alleyway to a nearby crescent.
I have tried to tell him off and will collect him from school from now on (hard tomorrow as I'm at the hospital with Isaac) but its hard to get him to understand how worried we get when he disappears because he thinks we can read his mind and just know what he is planning.
It is so good to just talk to other parents of children with special needs sometimes just because they understand how different and much more stressful and expensive life is living day by day with our kids.

Noah at school

School seems to be going OK for Noah.
He is so proud that he is able to walk to and from school by himself (we can see the school over our back fence) but I wasn't too pleased when he decided to come home by another route one day by leaving school from the far entrance.
He told us he had silence lessons, (which would be quite a good idea for Noah actually), but when pressed on whether he had to keep quiet or not we realised they were SCIENCE lessons!
He also got a bit confused as his vocabulary isn't that broad, so one night at tea time he told us proudly that the teacher had been very pleased with him that day saying "Noah I am so disappointed in you" - seems he had run off when the bell went for the end of lunch. We've now explained that just because it's a big word "disappointed" isn't a positive thing to say about someone!

cure for self pity

I'd been felling a bit sorry for myself lately as the children's behaviour makes it so obvious that they are very different and much harder work than other children.
But two things have just happened to change my thinking, one positive one negative.
First it seems that Isaac has finally finally learnt to DRINK! He tips his head right back and takes two or three swallows in a row. He has just had his first ever drink of nutrini and if we can get reasonable amounts of this into him we'll no longer have to worry so much about his diet and eating sloppy foods. It may even get him to put on some weight - he was back down to 12.2kg at his January hospital appointment and I think he lost even more when we were on holiday and out of routine.
Second my friend Bridget has just heard that her lovely Peter has relapsed with leukaemia, he was the first baby with Down syndrome that we got to know when we lived in Swanson, Auckland and I remember going to his "celebration of learning to walk" party with Isaac.
It is so so sad that the leukaemia has returned and after such a long four year fight to get his ALL in remission. I'm sure she'd appreciate your thoughts and prayers while they are faced with difficult decisions.
Suddenly the issues my children have fade into insignificance and my life seems wonderful after all.

back to routine

It's a week today since we returned from our lovely Disneyland holiday for Hannah's 21st birthday. We had a great time there but unfortunately a severely delayed flight back (left at 2.30am rather than 9.15pm) - all my obsessional planning and packing lists paid off and we had enough snacks and clothes in our hand luggage to cope well with the extra time at LAX and then at Auckland domestic where of course we'd missed our connection to Palmy.
Hannah loved the shopping, American food portion sizes and all the fast rides at Disney. We bought a new car seat for Isaac that he can use rear facing Sunshine kids radian (250 American dollars rather than $600 in NZ) we also bought an ipad thinking we would make a great saving, but forgot they add tax at the till so it wasn't that much cheaper than NZ.
The Ipad has not been put down since we got it. I love reading magazines on it and we have some lovely apps for kids with special needs. It is lovely to see Isaac learning how to touch the buttons to get animal noises and it is even helping him speak as he say "Goodbye pig" as he touches the pictures in peekaboo barn.
Noah and Isaac have both started new schools and are very tired by the end of the day (which is rather early at 12.30 in Isaac's case).