(Special) School Assembly

Noah hasn't had a great week. He's not sick, but he's not himself and we think that a lot of it is hay fever. He's hardly slept at night for two nights in a row and has needed a lot more suctioning than usual.  After two really bad nights, he finally slept okay last night, but then woke up and started crying ten minutes after Aaron got him out of bed.

I rang the school bus to tell them not to worry about picking him up for school, as he would be staying home with me, and then half an hour later he settled down.  I had a busy day planned, so decided he could just stay home with Kobe and me and do what we were going to be doing. 

During the morning his school was having a special assembly to share their work they had been doing on different countries, so I decided to take Noah along to join in. 

Noah's class have been learning about Papua New Guinea, so his teacher talked about all the things they found out about it.

  

It was nice to actually see his eyes open for it most of the time.

He did start dozing off before the end though.

Kobe wandered around most of the time and loved it, but hated it when a couple of the kids would scream on top of their lungs.  He also gets a bit worried about the kids who use walking frames.  It makes me laugh as to him what Noah does is totally 'normal', even when he has seizures, coughs and splutters or yells for half the day, but other kids with special needs still make him a bit nervous.

At the end we got to try different foods from the countries that the classes had talked about.

It was nice to be able to join in, even though Noah wagged school for the day.

Couldn't Resist It

For the past five years we have had a tradition that we take a photo of the boys in front of a tree outside our old house, when it is in blossom.  Harri started calling it 'the possum tree' instead of the blossom tree, so we still call it the possum tree.

Today I went to pick up the boys after school and thought I'd do a quick drive by our old house.  The tree was finally in blossom (it usually starts blossoming later than other ones on the streets around it) and I just couldn't resist taking the boys there after I picked them up, to get a photo.

I told the boys we were going to the possum tree, and Jay was like 'oh no, not again!!'.  I told them it would be super quick as I didn't even have my camera on me, and was just going to use my iPhone.  We pulled up outside our house and Kobe kept yelling 'me old house, me old house!' and was so excited to be there.

Someone has recently bought it and are doing a lot of renovations to it as it was very old inside. I would love to go in and check out what they have done.  There was  a tiler right in front of the tree mixing up some grout, and Jay thought he was getting out of it, but I went up to the guy and told him we were just going to take a quick photo and explained that we used to live in the house and for the past five years, we have taken a photo there at the same time of year. 

He asked me if I wanted him to take a photo so I could get in too, and I was like 'um nope! thanks anyway!  I only ever take one of the boys together to show how much they have changed during the year' and he said 'that is really cool'.

Harri is still growing like a weed as you will see from the photos.

I asked Jay if he will still let me take photos of them in front of the possum tree when he is in grade 10 and he said yes! I told him I'm writing that down so he can't go back on his word! We will see what he says in a few years when getting photos in front of a tree with your brothers isn't so cool anymore.

What am I going to do...

...when my little model starts school!? 

I love being a stay at home mum full time and have been so for the past 12 years (wow - that's sounds like forever!) but lately it's been hitting me that I only have another 18 months or so at home and then Kobe starts kinder.

I can't even imagine what it will be like to have all four boys at school.  I LOVE being home and love that I get to spend each and every day with Kobe.  Of course there are some days when I think I'm going insane from the same routine day after day, but I wouldn't want it any other way.  

I am looking forward to Kobe starting school, as I know how much he is going to love it, and it also means that I'm going to be starting a new phase in my own life.  I just have no clue what that is just yet. What I decide to do depends mostly on Noah and his health, but for now I'm going to dream that I will be a sought after photographer who just fills my days with taking and editing photos.  

Last week I had a photo shoot, so that morning Kobe and I went to check out the location.   He was hilarious as he saw me fiddling with my camera and then started to do all these silly poses for me. 

I'm sure I'll find something else to keep me busy, but in the meantime I'm enjoying having my little model with me every day.

It's hard to believe that he is growing up so fast. 

Spa Saturday

When we were building our house (who am I kidding - it still isn't finished so we are still building it!) I was really, really excited about our bathroom.  I really wanted to have a bathroom that was big enough to move Noah around safely in, and especially wanted to have a deep spa.  Those who know me well know I LOVE laying in the bath for ages, but I especially wanted it for Noah so he could relax in the water, while the bubbles blew on his tight muscles.

He usually has showers using his shower chair during the week, but on the weekend he has a special treat because we have more time and often gets to have a spa.  It's actually raelly hard to get him into the spa as his hoist doesn't actually go high enough to clear the top of the bath, so we get him as high as he can go and then have to try to carefully lift him physically over the top without hurting him or my own back (or breaking any bones which I'm always so worried about!).

All the hassle is worth it though to see how relaxed and alert he is in there.  His eyes always get really big as he feels the bubbles on his body.   Don't you just love those fat rolls! :)

I usually let him stay in for ages as he loves it so much- like half an hour sometimes.  After I wash his hair and body, I get busy cleaning the bathroom, so he can just lay in there and enjoy the bubbles.

The worst thing is getting him out.  I know he hates getting out and hoisting him with the portable hoist is such a pain. Sometimes he will start crying as soon as he is out, which breaks your heart and you wish you could just let him stay in there all day long.

I just wish we had time to have Spa Saturday everyday.

I cringe

everytime I hear a certain word, and this morning I heard it from Harri which I couldn't believe.   He didn't even know what he was really saying, but has obviously heard it being said at school.  He was watching something on TV and didn't like the singer and what they were singing so he said

... 'that singer sounds retarded'. 

I asked him if he even knew that that meant and he said 'it means that he sounds dumb'. I explained to him that saying something 'is retarded' is a way of putting down someone and is especially a way of putting down someone who has a disability, which means he is putting down Noah. He then started crying as he realised it isn't a good thing to say. 

After Noah was diagnosed with hydranencephaly I really noticed how often I hear the phrase 'you are retarded'  or 'what a retard!' being used as way of putting down to someone else.  It's particularly common for teenagers to say it to each other and I cringe every time I hear it, and I actually don't think they are really thinking about what they are saying when they actually say it, just like Harri this morning, and I don't believe they are necessarily meaning to put down people with disabilities either, but are just by saying it.

Aaron says at school he always hears kids say it to each other and he will pull them up and will say 'my son is actually retarded and I don't like hearing that', and they are straight away embarrased and apologise to him about it.  I even hate the word 'retarded' even when it is used in context.  Yes, Noah is retarded in his development, but I think because the phrase is used so often as a put down, that I hate using it at all.  Instead I prefer to say 'Noah is disabled' or 'Noah has severe disabilities'.


Even though society is a lot more accepting of people with disabilities these days, there is still a long way to go before people with disabilities are really accepted and loved, the way that we love Noah.

Big Brothers

Kobe loves his big brothers.  He follows them around all day long and annoys them until they've had enough of him, and it's usually then that the fights start.

But they are also very patient with him and teach him a lot.

Hopefully Kobe will be as caring as Jay always is to his little brothers, when he is older.

Little Gym Buds

Kobe has had a sad two weeks as his friend Charlotte hasn't been at the gym as Kell and the kids have been sick for ages.  Whenever we would pull into the gym Kobe would ask me if 'Harlotte' was there.  I would tell him no and he would burst into tears.  We have missed them a lot and are so glad to have them back this week.

This morning we pulled into the car park and Kobe asks the usual question 'Harlotte here today Mum!?'.  When I said she was he was so excited and started yelling 'me love Harlotte, me love Harlotte!' and couldn't wait to get inside and see her.

As we were leaving today they were so cute - grabbing each others hands as they walked out.


We are happy to have our gym buddies back :)

Our Blockaholic

Those who know me well know that I love a good reality TV show.  I love The Biggest Loser, Australia's Next Top Model, The Amazing Race, Australian Idol, My Kitchen Rules, Masterchef, Survivor and I hate to admit it but even The Bachelor, The Bachelorette and Big Brother when it was on.

When The Block started up again this year I was excited to get into another reality TV show and started watching it every night.   All of us started to get into it and had our favourite couples (Go Polly and Waz!!) but what surprised me was how much Harri started to become obsessed with it.

It seems that when Harri loves something, he REALLY loves it and eats, drinks and sleeps it.  He just can't get enough of it.  The show is always on after Harri goes to bed, so the next day day he would watch it online, not once, but twice or even three times if he loved the episode.

He has his favourite episodes which he watched about five times each - the one where they built the dog kennels, and when they were running around the maze.

The only problem is that he watched the episodes online so much that he ended up using up all our monthly data for our internet, so we are stuck with super slow internet for two weeks.  It's driving us crazy, but Harri just laughs and says 'it's my fault!'.

When The Block magazine came out earier in the week he begged and begged me to buy it.  I am happy that he wants to read, so went and grabbed it for him the first day it came out.  He even took it to church with him today!

He is definitely a Blockaholic.

I'm not sure how he's going to cope now that it is over.  He's already excited for next season.

TOFW Feature Story

After I emailed photos to one of the organisers for TOFW, she emailed me back as she had seen my blog post about it, and was wanting to know how I felt about it being featured on the TOFW website.  I was totally shocked as it was just about my weekend away with Mum and Chrish and what I got out of TOFW, but they were really keen to use it as they said it was great to share someone's perspective of the day.

Leona had also emailed them her photos and we were excited to see our photos used in some videos that they put together on YouTube about the event. 

After a few emails back and forth they decided that they wanted to put up my blog post on their website, to coincide with the TOFW newsletter going out as they wanted as many people as possible to see the post because it is the first international TOFW event.  The post went up a couple of days ago on the official TOFW website.  

They edited the post a little with my permission as I had a lot of stuff in there about what we did with Chrish (they still left some in though which I was surprised about!).  A couple of days ago it was the first 'latest story' and had Sarah and I cracking up about our pic on there together as we both thought we looked awful.   It was so good to see Sarah again as she has moved to Melbourne.  Who would've thought we would've caught up in Sydney of all places!

You can check out my post on the TOFW website by clicking on the pic below.

Where there's a will, there's a way

It's always an exciting day in the King house when I actually bake something, as it doesn't happen very often, although I have actually been cooking a lot more though since I got the thermomix, because it's so much quicker and easier.

Kobe is always my little helper and he can hardly wait for things to cool before he starts eating them.  Just after we'd made some cookies last week I noticed that he had gone very quiet.  Next thing I know he comes into the living room with two cookies in his hands, and a big grin on his face! 

I had put them right up high in the cupboard, but obviously not high enough from this little rat bag, who decided it was time to help himself!

He had gone to the bathroom and gotten his trusty blue step to help him.   I laugh when I see the step in all sorts of spots around the house lately - including our bedroom to reach the DVD player.

Looks like I'll have to start putting things up on the highest shelf from now on! 

AST

This crazy, passionate teacher (in more ways than one!) starts a new position at school today.

Aaron will no longer be Grade Leader, but is instead taking up the position of Acting AST (Advanced Skills Teacher) over his grade for at least the rest of they year.  It will be a lot more responsibility and work, but it's a great opportunity and he is looking forward to it.

Sleep

Why sleep in a perfectly good bed, when you can sleep on the floor!? 

This is how we found Kobe late one night last week, when we went to check on him before we went to bed. Who knows how long he had been there, but he was quite comfy and sound alseep till I tried to pull him out and he hit his head on the bottom of the bed and woke up!

A special visit to a special school

A few weeks ago Noah's class from Punchbowl made a visit to his class at his special school.  It was a follow up visit from when Noah's NHS went to visit the kids at Punchbowl, and everyone was very excited about it.

The best thing was that Noah was wide awake the whole time for it, and really seemed to enjoy hearing all the noise around him.

It was so nice to see all the kids playing down in the gym together .

The kids with special needs abolutely LOVED having the other kids there to help them and play with them.  The smiles on their faces were so big all afternoon.

Last time the classes visited each other they did a dance together, so they put a DVD on and all did lots of cool dances together including the YMCA.

The kids were so amazing together.  It was very special to see them all holding hands, and wanting to help the kids with special needs.

After a play and a dance in the gym, they all went back up into the classroom and Noah's teacher had set up lots of different activities for the kids to try.  The catch was that they had to do the activities just like the kids with special needs have to do it every single day, so they could see what it was like.

Using the page turner to read a story together.

Some of them even had a turn of being hoisted from a wheelchair, onto the mat.

They had to work with a partner to use the PODD communication book to tell them something that happened on the weekend, which some of them found quite tricky.

It was a really special afternoon and it was so nice to be able to be there to see the kids interact and have such a great time together.