Wednesday, September 30, 2009


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.

Monday, September 21, 2009

Check out Kelly- what an inspiration!

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 ;)

Friday, September 18, 2009


Luke's friend Zoe saying hello :)

Wednesday, September 16, 2009

Kindy Father and Child Cake Auction

Emily's kindy held a cake auction last night. Neil and Em had made the cake on Monday night, and iced and decorated it early yesterday morning. She is so proud of it, but was having a little difficulty with the idea that it was going to be sold. Of course we were planning to buy it back- luckily there was a cap on the price- so all was well in the end. She liked her cake best of course. I think they did a great job.

Wednesday, September 9, 2009


Luke has suddenly become a big boy with big boy tricks ;)
When I took off his nappy tonight, it was full of sand! I don't know what he does in that sandpit, but an awful lot comes inside. So I decided to give him a quick dip in the sink, as it was so warm in the living room with the fire going and he doesn't sit down in the bath any more.
The camera smile :)

Who's been into the cereal then?

Good thing his big sister and Ella are good at cleaning up.

The worst part is that he was singing 'rub a dub dub' which is the song I sing when I wash his hair... Some serious decontamination required after this! Should be a good photo for his 21st birthday.

Sunday, September 6, 2009

Therapy Part Two

After working on his communication skills with the cards and matching the pictures to the cards etc, Luke took himself off to M, the Early Intervention Teacher. He plonked himself into the seat, and was ready to go. I was still asking L some questions at the previous 'station' and Luke had already started by the time I caught up!

Here he is practising his drawing. He is also learning to draw dots and lines 'up' and 'down' the page.

Luke is also learning to open lids- fine motor as well as cognitive development. Look out mum! I love the look of concentration on his face here.

Luke is working on the concept of things which are the 'same'. He does this by matching the card with the picture when we do our sign work, and again here where he finds the things which are the same.

He is also working on sorting objects by size. He can already stack objects, and is now learning to slot the cups one inside another. This is currently one of his favourite tasks.

Luke is learning to sort shapes here and is getting better each time. He also does simple puzzles and other activities. He loves working with M and this is one of his favourite times during therapy. He just loves the challenge and always tries really hard to have a go. He is a quick learner and I am always so proud of him when we have finished our day.

Next moved to the Speech Language Therapist. We discuss any feeding issues, but we don't have any. Luke eats 1-2 meals off a spoon, has finger food for snacks and feeds himself dinner, so no worries there. I tell her about Luke's new words for the week, which this week included "Chris", 'grass' and "Ella! On your bed!" Ella is our dog, and that is what I probably say the most! She also gives me ideas for how to continue this good work and anything else which arises.

Then we work with P the physio. I need to check with another mum before I post a photo as her child is in it too. At the moment Luke is working to strengthen his core, as preparation for walking. He walks behind a trolley and cruises around furniture. He has recently learned to ride a ride on, and this will help with the core strength too. We also have lots of 'horsey rides' with Dad as the horse, play with the swiss ball, bounce on the tramp and have him walk as we hold his hands.

Luke is doing really well, and he loves his therapy sessions. I am sure it is the highlight of his week, and he is always asleep before we hit the road on our way home.

So thanks ladies for all you good work with our Luke Skywalker, and all the fun you have doing it. I can't tell you how much we all appreciate it.

Friday, September 4, 2009


On one of the blogs I follow, written by a mum with a wee boy with DS who is about 6 months younger than Luke, the mum has been writing about her son's therapy. We have had issues with therapy in our time too, mostly the lack of it, and in some cases the quality (not you T in the Hawkes Bay!). We even moved so that we could access the type of therapy we wanted for Luke, and I feel really strongly about the fact that this type of therapy is not available all over the country.

We travel an hour and a quarter once a week to attend this centre. It is not home-based. I take Emily with me most of the time, but have found someone to help me out now, so that she will not always come and won't miss kindy so much.

Therapy is not just for Luke, it's about me too. I don't want people coming into my home non-stop just because Luke has a disability. I don't have this happen for the others, and I can be trusted to do my best without the powers that be deciding that they need to check us out. Yes, the centre is not Luke's natural environment. Neither is school for Ben or kindy for Emily. That doesn't mean it's not valuable or that they can't learn there. It's good for me to get out of the house and to not worry about the state of tidiness if I have professionals coming here all the time. It's good for Luke to be in a group setting and to be like everyone else. I love being just the same as all the other mums there. That they, like me, see Luke as Luke. Not Luke the boy with Down Syndrome. No stupid questions. Just other parents and their kids and celebrating their achievements and supporting each other and just being 'normal'.

There is measuring of progress, not against what 'typical' children are doing, but against what he has learned and what his next step should be. Making sure his development is progressing evenly across all areas.

The therapy is holistic. The therapists work together to teach Luke as a person, not seeing only his needs in their area of expertise in isolation. They KNOW him. I think they love him too. We focus on PLAY and I come away each week with a few ideas to try with him through play. He loves going and it is FUN.

We start each week with a shared morning tea, followed by a music therapy session. This is great, and allows us to reinforce sign as well as other concepts such as directions, animals, parts of the body in a way the kids enjoy. Luke has trouble sitting still! Then we rotate through the therapists.

Here is Luke working with L, the Communication specialist. We are doing a version of the Downs Ed See and Learn programme. Luke has the flash cards with the photo on one side and the word on the other. They look at the picture, and L signs the word as well as saying it.

Then Luke posts the card into the box. This is his favourite part!

He is excited to have grabbed two cards at once! Now he matches the photo on the card to the same one on the board. He is very good at this. He is also working on 'same' with his Early Intervention Teacher.
More focused on the matching now. He really checks out the photo, and often turns the card over to have a look at the other side where the word is. So cute.

Paying close attention to L as she encourages him to match the cards!

L signing 'washing' as Luke looks at the photo on his flashcard.

He signed 'finished' frantically once he had had enough, and I put him on the floor as I had a couple of questions I wanted to ask. When I turned around, he had crawled over to the Early Intervention teacher, plonked himself in the bumbo seat she uses, and started without me! Talk about motivated. I look forward to going every week.
Photos of what he does there next post. :)