Check out Clayton!

Check out Clayton- 19 years old and has his drivers licence :) Very exciting.
http://www.stuff.co.nz/national/3196667/Down-syndrome-driver

Christmas

Lucky Luke with his new trampoline from Nana
What? A wot wot?

Emily with her new bike and a large, noisy accessory.

The princess

Christmas Day was absolutely sweltering! 32 degrees here and not a breath of wind. Luke, the baby who won't sit down in the bath, was not only sitting in the paddling pool, but he was standing at the edge, and diving in face first over the side! I think I might need to take the shampoo outside...

Hope you all had a Merry Christmas :)

Look who's busted now!

He's Busted!

Last week school finished for the year, so all of Ben's exercise books came home. I was looking through his story writing book, and started laughing. He had written this story BEFORE his birthday.

It's spy time at my house because we need to find ort (out) wate is in the farmes bag. This is wate I know. A gun. (Emily had got him a nerf gun.) My sister told me. Finding ort (out) wate is in yore present is pritye nortye (pretty naughty) and the secret present is in the boat with a blanket on it.

So no, his sister cannot keep a secret, and yes his present from us was in the boat with a blanket on it. Little monkey! Safe to say, the Christmas presents are not in the boat, and are already wrapped so even if the 'spy' does find them, he will not know what they are!!

His teacher must have been laughing to herself, and she never let on!

The photo shows what was under the blanket- Lego! Yay!

My Big Boy is 6!

Here he is on the day- the 18th.
A few weeks old.

15 months

His 2nd birthday

Ben's 3rd birthday

Nearly 4.

Where did the time go?

Happy Birthday Ben!

So over it...

I am struggling with the weight of other people's judgements and comments when I take Luke out in public. Often people are great, and there is not an issue. I get lots of compliments and smiles, and Luke is so smiley and friendly that people interact with him a lot.

But I also get the not-so-nice comments. Like the other day at the optometrist, when a man and his wife came in to the waiting room. Luke LOVES men, so went straight over and put his arms up to be picked up. The man scooped him up and bounced him on his knee. Then he got on the floor when Luke brought him a toy car, and played with him for ages. It was lovely...until another lady in the waiting room commented on how friendly Luke was to the man who was playing with him. At this point, the guy's wife piped up and said "Yes, most of them are like that."

All I could do was blink back the tears. Luke is not a 'them' who is friendly because he has Downs. My other kids are social too. He is a person, not a syndrome.

I get people saying something offensive or insensitive every week. This has only started since he is bigger and the facial features of DS that he has are more noticeable. How do I cope with this without taking it to heart or saying something that makes me sound like a b***h?

It's getting to me.

On the good side, Luke has passed his eye test, and won't need testing for a couple of years. Yay! One less appointment to be getting to :)

Brothers

This is actually the last photo I took. Ben was minding his own business, having helped himself to a can of creamed rice from the pantry after school. Note the gorgeous bowl he is eating from.
Also note the little brother, who is obviously fond of creamed rice, recognises the tin, and as his mother is starving him, moves in for the kill!
Luke finds the strangle hold useful for subduing the big brother in the pursuit of food!
A brief respite as he eats a mouthful that the big brother has been kind enough to share :)

It obviously takes a bit to get Ben's attention!

Wordless Wednesday

Guy Fawkes

The Evidence

Here he is! Yay!
And there he goes!

Yesterday he took his first step- from standing against the wall to his dad. Usually he just leans, but yesterday he took a step! Couldn't be more excited or proud :)

Luke can stand up! It's official!

After surprising his daddy on Friday by standing in the middle of the lounge floor, away from any possible supports, when Neil turned around, Luke crawled outside on Saturday, and stood up on the concrete patio as I was walking towards him. It took every ounce of self-control I have to continue walking calmly towards him, fighting the urge to either run screaming to catch him in case he fell and hit his head or scream and clap loudly because he is so clever!

So we now know how he does it- he goes from the spiderman crawl position, and using those abs, just stands up, bending from the waist. Very clever. I am so excited that I have been modelling this move maniacally and repeating "Stand up, no hands!" and raising my arms in the air to prove it. I must look like a loon ;) (As if I am not...)

I will try to catch him in action soon, but you know how it is with kids and cameras.

Oh, and Ben has another strep throat which requires a third round of antibiotics-sigh- but hopefully he'll be better soon.

The Beginning of the Barbecue Season

Last night we had our first barbecue tea. I defrosted the sausages and had the chops in the microwave and decided to bath the kids before we ate, as Neil was going to cook the meat when he got home. Ben and Emily were all excited to be having sausages (!) for tea.

When the time came for the meat to be cooked, I overheard Ben excitedly telling Neil that we were having sausages. To which Neil replied, "No, we're just having these chops. There aren't any chops". Cue Ben's exclamations of frustration and disgust: "But I hate chops and MUM said we were having sausages". "Well there are no sausages here Ben". At which point I piped up that we were having chops AND sausages, which were on the bench, ready to go. "No they're not" said my ever-loving husband. I cast a disbelieving eye over the bench, ready to blame him for a poor effort in looking, but no sausages.

Then the penny dropped. That b****y dog! We all race outside, to discover fragments of plastic wrap and polystyrene all over the lawn, but not a scrap of sausage anywhere. I hate that animal!!!

Luckily I had more in the freezer, so all's well that ends well.

On a similar note, I have had Emily scrubbing coloured pencil off my window sill this morning and Luke throwing nutella sandwiches across the kitchen, and it's only 9.30am!

Oh, and earlier this am, Neil turned around and there was Luke, standing in the middle of the floor, standing up all on his own! We have no idea how he got to that position, but he can obviously do it, sneaky little monkey!

The Future

I often worry about the future and what it may hold for Luke. I don't want him to be lonely. I want him to have friends and be happy. Just like the rest of my kids. But for some reason, I worry about it for him. With the others, I just assume they'll be ok, be independent and productive and happy and all the rest of it. I know that is not particularly logical, and that they could be miserable and lonely too, but that doesn't stop me!

I also know there are lots of people with DS who live independently and are very happy. But who am I to let reality get in the way of my worrying? I want Luke to live in his own place, but I have never lived alone, and have no desire to. So I worry about sending Luke to live alone.

Anyway, I have a solution. Or rather, Vanessa and I have a solution. Vanessa is the mother of Luke's friend Aidan, who I am about to introduce you to. We all met in therapy at the Champion Centre- and Vanessa and I get on like a house on fire. Meeting parents whose child has the same syndrome as yours is a strange thing. You have something in common, but it may be the only thing you have in common. However I have found a real friend in Vanessa, and I expect many other mums I have met and will meet there.

This is Aidan. He is about 3 months younger than Luke. He is also the youngest in his family. Like Luke, he is a mover and a shaker! We love Aidan.

Here are the boys just hanging out together.

Probably getting into trouble together (and we suspect there will be plenty of that into the future!)

This is one of Aidan's favourite pastimes. Sorry Vanessa, but I had to put it in! :)

So the plan is that the boys will be friends throughout their lives. And no we have not consulted them, and no we are not planning to! They may like to go flatting together, and get up to boy stuff together. Like trouble. And I am happy with that, it gives me some respite from my worry. Luke has a friend who will 'get' him, who will not judge him, who is on the same level as him. This is the beginning of a beautiful thing.

Which is not to say that there is no competition between them, or actually between their mothers, as to who will walk first. Because there is. And that's normal too!

Look what Daddy made me.

Neil made these parallel bars for Luke over the weekend. There is a set at the Champion Centre which Luke is beginning to use, and so instead of being frustrated, we got busy. I say 'we' but read 'Neil got busy' unless bossing him around counts! Thanks to Gillian for her tips too.

I think this boy is pretty cute, and he's finally feeling better. Yay for spring :)

Sick kids again

What a nightmare. Since my last post, we have continued the theme of sick kids in my house. Ben got a fever again and was home from school on Tuesday. Took him to the doctor on Wed and he had his strep throat back. So 10 more days of a different antibiotic for him. The doctor also swabbed Luke's throat, and we got the results on Thursday afternoon. His strep was back too. So 10 more days of antibiotics for him too. My sore throat was back too, so off to the doctor for me, as the long weekend was coming, and I didn't want to be paying another small fortune if I got sicker then.

Then we had the paediatrician for Luke- a regular check- on Friday afternoon. He passed with flying colours, and all his blood tests came back clear, which is great news. We are still waiting for an exact measurement on the size of the ASD- just to see whether it is now so insignificant that we can leave it forever, or whether he needs a further scan when he is 4 to keep an eye on it. Either way, I'm happy. Other than snot and a weird viral rash, he was fine.

Cue Friday night, when after his antibiotics he started vomiting. Great. Poor little boy had a very gurgley tummy, but once it was empty he slept through the night. Yay! Shame his brother and sister did not oblige. So off to the emergency doctor on Saturday for a change of antibiotics. I wrote Neil a list of what had been going on and sent him. I think I have had my fill of doctors lately. The guy he saw has a 17 year old daughter with DS, another of those weird coincidences :)

Luke was all better yesterday, and with diminishing snot levels. Someone has to keep Kleenex and the local doctors in business ;)

Here's hoping for a week free of doctors!

Getting Agile

Luke is now able to get pretty much anywhere and do pretty much whatever he likes. Like climbing onto his brother's head when naked!
Or climbing up onto the couch for a cuddle [the big boy's tongue out is for the camera, not the brother :) ]

Arriving on the scene

He can also balance, like on the end of his couch. Such a show off!

Now he just needs to walk. I am getting impatient, and I know it will happen, but I am not good at waiting. He has been creeping and crawling for a year, and still no walking. Trying not to feel discouraged, but...

Sick Kids

Luke testing the dirt- I don't know what is up with him but he's always doing it!
Helping Dad in the garden.

We have just started school again, after the holidays. Emily was sick in the week before the holidays started, with the flu. Then Luke got it, and ended up being admitted to the hospital to be assessed for pneumonia. Luckily he did not have that, but came home with some antibiotics as a preventative measure. Then Ben got a fever and cold and a sore throat. That turned into strep throat during the week, so had to take him to the dr while we were away and get antibiotics for him. Next Luke got a fever again. Took him to the same dr, who was not convinced but took a swab just to be sure. Guess what?? Luke has a strep throat too, so more antibiotics for him. Then I got it- such a sore throat and a fever. And of course on a Sunday, so off to the after-hours clinic for me, and more antibiotics for my strep throat. So Ben's are 4 times a day, Luke's 3 and mine twice a day. All I am doing is giving medicine, working out who is due to have medicine, and who has had it already! And we have been exposed to the chicken pox, so that will probably be next. I don't think we had a single day with everyone in the family well.

The New Highchair

I have been unhappy with the highchair we had for a while now. It was fine with Ben, because he was quite tall, so he could see and reach the tray reasonably well. This is not the case for Emily and Luke, who I had to prop up with cushions or towels when they were smaller and always had trouble seeing and reaching over the lip to get anything. I have been eyeing up an expensive European wooden chair, which can be used as a highchair, and also as a chair for many years to come, as it fits at the table, and has an adjustable seat and footplate, as well as a removable tray.

Well, I recently found a NZ made version, and it is about 1/4 of the price, so of course I got one! The tray is at a great height, and it fits at the table, so Luke can join us in family meals. It is easy to clean as well, which is a huge improvement, and it looks great. I love it!

It also caters for a range of eating styles...

and he can see what is in his bowl...

and he just loves it!

This method is much more efficient than bothering loading up a spoon!

Or you could try two spoons at once!

Love it, love it, love it!

Fugitive Friday

I'm out of here Mum
Caught!

No, he can't even get close to getting out, but he sure is trying ;)

Hospital

Luke has been unwell for a few days now, after Emily and Ben were sick with the flu. Of course he has been the worst, and yesterday Neil made a doctor's appointment for him. With half an hour to go until the appointment, I decided to take him in early. His temperature was 40.1 deg Celsius, and he had had panadol and neurofen and it had gone up further.

When I got to the doctors he got even worse and was crying so they put me in the nurse's office to have a quick check-up with her and be n the airconditioning as it was getting hot. They then informed me that there had been two emergencies and so there were 6 people ahead of me! I was not best pleased, even thought I know it was no-one's fault. They juggled things and I only had to wait for 2 others in the end. The doctor is very thorough and decided to send him to the hospital for assessment as he had some crackles on his lungs.

So off we went at 5pm last night. We saw two doctors there, and had his oxygen sats checked and a urine sample etc, and were given some preventative antibiotics so thankfully we were home by 8.15 pm. He is much better today, so here's hoping we get a full night's sleep and he's even better tomorrow. Fingers crossed.

Check out Kelly- what an inspiration!

http://www.youtube.com/watch?v=tAoI0w1Pe_Q

Police Dog Puppy

Ben's school had their school fair on Sunday. There was a Police Dog demonstration there, so here are our boys waiting and watching- there is a teenaged dog in the distance.

Look how cute they are sitting together!

Luke got a special cuddle with the Police puppy.

Not sure who is mauling who in this one!

Puppy love ;)