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).

off we go

On Tuesday we are off on holiday to Disneyland for Hannah's 21st birthday and my sister Caroline and her family is staying here while we're away so it's worked out really well.
It also has encouraged us to do a few needed things like turning off and cleaning the aga - unfortunately it could do with fumigating now as I put a pair of shoes to dry in the warming oven and instead of an hour I forgot them for 24hours!! I now know how well asics trainers are made as all the glue melted and the layers separated!
Isaac has just had a paediatrician appointment and has gained 50g and half a centimetre in the last 6 months - he's still between the 3rd and 10th centile for Down syndrome though. I had also noticed that he has a slow pulse rate, sometimes just 60 - so he had an ECG, which just showed right bundle branch block from his surgery but was otherwise normal.
The paediatrician has given us a letter saying Isaac needs custards to give him fluid so we can hopefully bypass the security issues at the airport - we had a bad time at Manchester airport when we had to taste half the food we had and the opened jellies leaked in our bag!
Noah continues to display his impulsive sometimes wild behaviour but at least this is a positive at Disneyland as it means we can get a guest assistance pass so he doesn't have to queue for so long.
Beth continues to plan for the wedding and at last has found bridesmaid dresses she likes - (on sale at David Jones at a very good price)
The little bridesmaids are wearing ivory dresses with sashes to match the older bridesmaids dress colours. Noah will wear his smart suit if we can get all the mud out when we take it to the cleaners (He crawled across a muddy garden at a birthday party) and Isaac will have ivory trousers and top.
We're back on Sunday 30th Jan and Noah starts school on Feb 1st and Isaac on Feb 3rd - it will be good to get back to routine!

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

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."