Just photos - camping and NYD

Okay so time for few words and many photos. Of course it is summer here and over the xmas/new year break we packed up and went camping in the bush, the boys had such a great time, it was a really beautiful trip

This boy LOVES his dads ute !

Owen and Col sharing the love (of rocks!) (Col is a geologist)

See the giant leaf insect on Cols elbow? Cy wanted to hold it but couldnt bring himself to do it Lol

He was much braver with this gecko

A visitor before dinner

and another visitor (Cy was loving it!) we even saw sugar gliders at night gliding from tree to tree 

Early morning camp breakfast

My bush baby

a rare photo of me (I am usually behind the camera)

Ha I love this shot 'ole Ma and Pa

We did a fantastic walk through some amazing rock formations (isnt this one amazing!). Owen walked the whole way over pretty uneven ground 2.6kms took us about 2 hours (with a stop for morning tea).

These boulders were huge and you could walk right in amongst them, it felt like we were in a cathedral

a rock just the right size for a rest, he did so great!

After a few days camped we headed back down to the town and for lunch at the pub.

Owen saw this sign on the front of the pub and said "cream, cream, cream" (icecream). We ordered our meal and the whole time Owen was telling the cook "cream, cream, cream" 

The cook was so sweet she brought Owen a bowl of icecream to have.... with his chips! Owen was VERY appreciative with lots of "mmmmmmmming" it must have hit the spot after all that bushwalking.

As we were leaving the pub we met a man who used a walking stick, Owen took for a spin, it was so funny he walked up and down the verhanda of the pub with it, Cy stepped in to take it back to the man...which of course resulted in an argument.

After those days in the bush yesterday was New Years Day and we decided to make a break for the beach its a 2.5 hour one way trip but SO worth it we all enjoyed it so much, definately washed the woodsmoke and dirt from camping away.

 "working" on those balance skills

he started out very wobbly and tipped into the water all the time

but he mastered it by the the time we left

The water was so perfect and we stayed in for hours until we were all wrinkled before heading home

Happy New Year! 

Path of acceptance

Over the past few years I have read many times people saying they wouldn't take away the extra chromosome from their child even if they could.

For the most part of this 3.5 year journey, that is NOT how I have felt.

But these past few months I have been feeling differently, I love who he is and what he brings to our family and to our community.

There was one moment when we were in Vanuatu that really helped me to see it - what he brings to the world...

Owen was sitting with some local women and they were playing a game of "happy and you know it" and clapping their hands, but when Owen saw one of the ladies was not clapping he got up and went over to her - gently taking her hands in his he clapped her hands together and smiled encouraging her to clap along, she laughed and started clapping and he laughed back to her in such a joyful way that everyone laughed. So simple - but for me it was a glimpse of the beautiful inclusiveness and the "in the moment joy" that people with the extra bring to the world.

So I don't know if I am a bit slow on the acceptance path or if I am average or what, but it is only now I understand that to take the extra away would mean that Owey isn't Owey. And that would make our family and community so much the poorer.

A glimpse inside the crystal ball

Today i was sent a link with a photo attached
and for the first time ever
I felt like was looking into the future..
I could see Owen as an young man!
Wow!

Not only does the young guy with Ds and Owen look alike with their long blond locks but i love that this young man is participating fully in life.

Here is a couple of links of what this young man is up to
http://www.filmink.com.au/news/nonstop-possibilities/
http://sydney.edu.au/news/84.html?newsstoryid=10412

The path that this young man and his peers are forging here in Australia is making way the younger generations, kids like Owen, to come through school and into a more inclusive society.

So damn inspiring and exciting !

Preschool and volcanos

Just a quickie post to say Owen started preschool last week, the children treat him like a baby "babies aren't allowed in the cubbie", bit heart breaking for me, but I am sure Owen is thinking "well I am NOT a baby!!, so I'm coming in"It is hard watching him adjust he is clearly so out of his depth communication wise, the teachers don't know sign (but are learning as we go ) they have made no accomodation for him, he doesn't have an aid, I don't kow if it's a good or bad thing I don't know what to think at all. He is only there two mornings a week, if he was there full time I would be more concerned but two mornings seems okay and he is definatley settling in, joining in cooking, painting and generally exploring.In other news we had an amazing trip to Vanuatu where Owen was treated with lots of love and good humour by the local people, Randall said "Owen should live in Vanuatu because people treat him so well there". I don't know if Owen is the first person with Ds to stand on the edge of an active volcano ( probably not) but he was AMAZING up there, just excited and happy and very relaxed ! He was also amazing with the local kids playing with them the moment he stepped into their village. It has been such a great experience for us all being in another country, only problem is we have been bitten by the travel bug!

More than ready

The last few weeks have been hard emotionally for me. Owen has been difficult, he is cranky and bored easily, so he does things he shouldn't like playing with the CD player or he runs around and around the kitchen table - looking out from the corner of his eye - his new visual stim....arrrghhh. He screams and yells a lot and this upsets Cy who cries and whines really loudly which makes Owen yell even louder. To put it simply Owen can be hard work, he needs alot of attention, he is curious and naughty and he can be a down right bully, (Cy cops it most)and everyone is frustrated with him at some point during the day. So I feel it is really time for him to move on to preschool a couple of days a week. I have mixed feelings about the fact that Cy and Owey will be in the same class, of course Cy will be able to help with signs and communication but I am a little worried that Cy will have lost his respite days from Owey, Cy really needs a break from him. I guess it's one of those 'suck it and see' moments (do you know that expression?). And anyway it will only be for 10 weeks before school closes for the year, then Cy will move to the Kindy room in 2013. (our school year runs from Feb till December). Everything changes. My hope is that with Owey in preschool 2 days he will appreciate and enjoy being at home again instead of running a terror campaign on the house and everyone in it.

June post that I didnt post

So June was a complete write off for Owen, he was sick with high temps for 6 days at the beginning of the month, then something changed and I knew he was in trouble, I took him to the doctors that day but she couldnt hear or see anything terribly wrong - "just an upper respiratory infection",  I felt reassured.....but I was also troubled......I was having flashbacks to his first year when after his heart surgery when he contracted RSV and his airways were shot.

2 days later (8th day of high temps) we went back  to the doctors and this time she could hear crackles in his lungs, she gave me a ticket to get an xray of his chest done  - she didn't make it seem very urgent - she even said "get it done tomorrow" - I left the surgery and went straight to the Xray clinic - 10 minutes after having the xray, the doctor rang - Owen has pnemonia !

By this stage Col, Owen and I were exhausted, we were hardly sleeping at night, Owen would flap around, grunting, coughing, he was in our bed to save ourselves having to constantly get up to reassure him. Anyway we started him on antibiotics and braced ourselves for another night of very broken sleep - the doctor wanted to see him in the morning. By this time Cy had also come down with a bad chest ..

By morning she could hear even more crackles in his chest and she sent us off to the hospital, we were admitted and actaully for that first day he was kind of okay - they put an IV in and started giving him antibiotics - but come night time he CRASHED his O2 sats went down to 82 and he went onto oxygen.

 He kept going down hill for the next 3 days, it was so scarey, at one stage I took him off the oxygen to take him to the toilet (he ended up totally regressing with toileting during our stay in hospital) and on the way back he was like a limp dishrag in my arms, his sats were 76 when we got him back into bed, he had stopped eating and drinking, I started to panic a little why wasnt he getting better??

On the 4 th day he woke up after another shitty nights "sleep" and wanted some orange to eat and then he ate all morning and started drinking again - which was lucky because the IV packed up that afternoon. Finally he had turned the corner, now we were just waiting for his sats to come back up - they kept on trying to wean him of the O2 but he just couldn't cope crashing back to 85 within a few minutes. This went on for days ,,,,,,.......,,,, and days. by this stage I had, had 2 nurses a doctor and the ward cleaner ask me "did I know that Owen had Ds when you were pregnant?" NOW I don't know what the F. that has to do with his care but I am SO sick of people asking me that question 3 years down the track, still answering THAT question. Does it matter?? Does my answer matter??? Does it give them permission to feel sorry for me  OR think I have brought this situation on ourselves ??? I was so angry with thinking...what are they REALLY asking ???

They tried some steroids to reduce the swelling in his lungs - horrible stuff  - Owen was hyper/agitated on it and I hated seeing him like that - the course of steroids was 3 days long and I wished each of those days away as quickly as possible.

At this stage (day 7 in hospital) I thought if we dont get him moving the junk that was in his chest was never going to get out, so I started taking him off the O2 and making him walk, and play on the floor until he would get lethargic and pale and then I would put him back on the 02.

On the morning of day 11 in hospital, and with Col and I completely shattered) we were finally allowed to take him home - his sats were sitting around 94 - but that was good enough - we were busting him out.

So - after 21 days of illness he was finally getting back to normal, well except for the toileting....so frustrating!

But then I started to feel sick .....really sick, I am pretty sure I got what Owen and Cy had had, it was a nasty flu and no wonder Owey got pnemonia, my chest was so tight and congested I really struggled to shift the junk on my chest, and I think it was only that Cy is a bit bigger and stronger that he managed to stay out of hospital himself. So after laying around for over a week and coughing until it hurt I started to feel better and Owen was starting to have less toileting accidents, Cy had stopped coughing too. And  June was over !

July arrived - Owen is toileting again with no accidents, everyone is well.
And I've decided to be generous and think that people ask me if I knew Owey had Ds before he was born out of idle curiosity, nothing more.....

Oweys FAV Tunes

Owen is having a little burst of speech at the moment, which is so cool, I know it is something we will be working on for years to come but he is really trying so hard to overcome his dyspraxia, sometimes you can see the word wanting to burst out of his mouth he is trying THAT hard - it comes out all jumbled or with only one sound (which sounds nothing like what its meant to) words like "Open" are nearly impossible for him - even though he can say "Owen" easily, for me it seems like a small step from Open to Owen but he just hasnt made it yet.

 I think what has helped him with speech recently is an English as a Second Language music CD by Dream English. Because the principles of  teaching ESL to children is - repetition, simple songs sung slowly and clearly and with few but repeating phrases or words, just what Owen needs !  His favourites songs are I like Apples , Its a Dog and the Color Song (I have provided the youtube links to these songs and you can also download free flashcards for each of the songs from the Dream English Website and the audio files you can download from iTunes). We have the Dream English CD and we sign and sing along to these songs almost everyday they are great preschool age songs and he absolutely loves them and asks for them over and over.

Also Owey isn't enjoying Apps on the iPad so much at the moment,  because he is loving watching youtube ! so his favourtie things are
Stories
The Very Hungry Caterpillar
The Tiger Who Came to Tea

Songs
10 little Numbers
Apple apple Aaa
Driving My Tractor (warning totally addictive !! his fav by far)
The Shape Train (there is also a number train, fruit, colors, alphabet ...etc (these are great because there is a good pause between each word which gives Owen time to have a try of each one as they come by.
Numbers Song (there are also versions in italian, spanish, german, japanese and french and both Owen and Cy love all of them !??? This song is nice and slow and repeated.

Its kinda great that he is choosing to watch things that are "good" for him and I definately think that he is learning speech from watching them over and over (well at least twice a day ;)

He is just starting to put a couple of words together when he talks, things like "there 'tis" when he finds something he has been looking for, and "Cy 'oool" (Cys at school). And the other day he said "I read it" as he sat to read a book, we all looked at each other to see who had said it - it was like the dog had suddenly spoken, I nearly fell over ! But its just a one off a tiny glimpse and then it was gone again, you can't make him repeat things like that when he sayes it, its just a moment, a flicker of fluency. I hope that with time and practice we will hear more of this kinda thing more often, rather than randomly, cause its in there !