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 !

Reps update

So i just wanted to write down just what I have been doing with Owen during the past few weeks (re previous post).

I got him a little spray bottle so he can squeeze a mist out, rather than dirt or spit. He can work the spray bottle (building up his finger strength) while doing something that seems more purposeful, we sprayed the concrete, leaves on the bushes etc and still getting his visual fix of seeing the mist in the sunlight. We tell him to blow or whistle the moment he starts to do spit raspberries and it is working well, he loves the sound of whistling and stops pretty much right away.

If he goes under the deck to throw dirt and make dust clouds I entice him out by asking him to come and blow bubbles with me, the bubble mix is now stationed right at the back door so I can get it quickly, he comes out from under the deck pretty much right away now. I think the bubbles still meets his visual need, and it is so much better than him stirring up dust clouds for himself, we interact, we connect, he works his lips and breath control, makes me feel so much better!

Finally the last thing, I got some little plant pots we had left over and showed Owen how to fill them up and let the sand pour out the holes in the bottom of the pot, we used the pouring sand to fill up the toy trucks, he llikes this activity, Again I think it meets his sensory needs but its nice and CLEAN , lol

After writing the post about Owen playing in repetitive ways and how anxious I was feeling that he may develop/slide into autism, I finally went to bed. As I lay there, in the darkness I thought more about it and came to just one conclusion - that all I can do, really all I can do, is LOVE him right here, right now, TODAY ( because how much control have I got to stop the organic process of autism ? None! )

And I have enjoyed him so much over the past few days.

He seems lighter to.

It all seems to be paying off, because he is getting easier and easier to distract from those repetitive habits, he even smiled at me the other day when I found him under the deck (again), quickly signed "bubbles" and came out to me without me even asking. Yes he got his bubbles. Cheeky monkey.

Umm a few to many reps ?

Owen has always had a few quirky behaviors which have changed over time

Before he was mobile he used to stare at the back of his hand, like he was checking out a manicure, he also had what the doc called a habit spasm sometimes when he was sitting or laying on his back he would suddenly stiffen and roll his eyes to the top of his head, sheesh at first we thought it could have been seizures but we took a video to the paed (it took 4 days of trying to get a good video of it and then Owen did it as we sat down in the paeds office)! and he confirmed it was "only" a habit spasm. Later when Owen was bear crawling and he would be in the downward dog yoga pose he would drive any toy close by through his legs while putting his weight through his head and one of his arms. Once he started walking he lost this quirk too.

But at the moment I can't leave him outside for more than 5 minutes alone or else I find him "dusting" he loves to see the dust clouds billow up from sweeping the dirt under our deck or out on our driveway, I always tell him it's dirty and to stop and then try redirecting him, he is always easily distracted from his dusting but just as quickly goes back to it if I am not directly engaging him, so sad and maddening to see him trying to sneak back, I can't leave him unattended.. And inside if there is any sunshine streaming through the windows he will blow raspberries of spit into the light to watch them splutter out and fall, again I redirect, but often I just shut the blind to stop him doing it. And recently I notice he spends way to much time lying on the floor to drive cars back and forth close up in front of his eyes.

........ He's visually stimming right?

Scary shit. Really scary.

my resting heart rate is double what it should be, it makes me feel sick to think these behaviors might mean O has autism.

Or maybe it's just a DS thing right? ........or maybe not........

He is still his sweet self, still hates giving kisses or hugs...... Booow boooom (oh does random people at playgroup count?)

I am analyzing everything the kid does, eats, sayes........glimpses of that diagnosis trapdoor threatening to open..........again

The letting go

When I think about Cys seperation anxiety at preschool I have this vision, a mental picture - I see myself with baby Owen in my arms, he is very sick.....and needs an operation to mend his heart. I am looking down at Owen - all my attention is on him. And my other baby - Cy (he was 16 months when Owen was born), is holding onto my legs, holding on to ME tight. This picture has been with me since Cy started preschool, I didn't know why it appeared or what it meant.

Well I talked to a few people about it, some thought the vision was about my guilt, but I don't feel guilty at all, I feel quite detached from the picture.....it just is. In reality I did meet the needs of both of my little boys - I tandem fed both boys for nearly 4 months (weaning Cy at 20 months), yes my mind was full of worry, sadness and grieving after Owens birth but I used to relish being with Cy his cheeky, loveliness, kept me in the present moment kept me living, moving, breathing.

I got a bit lead astray with the suggestion it was about my guilt, I thought about that for a few weeks but decided in the end that really, truly it wasn't about guilt. Its all about Cy about how he feels - like he can't let go. Of course baby Owen got his operation and after about a year of sickness was finally well, and little boy Cy grew up too and now it is time for Preschool and Cy doesn't know how to let go of me, its a complete crisis for him. He has a great time once he settles but can take 2 + hours! But he really does like preschool, he tells me its only because I leave that he cries. He doesn't know how to let go, after all that's how how it was for him for nearly half his life !

It has taken me 8 weeks to work it out - how to transform this picture........to give it power. It happened last week when Cy and I were drawing with pavement chalk out at the front step, I drew a mother with a baby in her arms and I began to tell Cy a story about the mother who had a very sick baby and also a little boy. I drew the boy holding on tight to his mums legs. Of course eventually the little baby has an operation and isn't sick anymore but the boy is stuck fast to his mum legs and can't let go, he is afraid.

I asked Cy to tell the little boy to let go of his mums legs for just a little while and then come to his mummy's arms since she can now hold both of her children, now that the baby isn't sick anymore.

Cy totally 'got' it. And at the end of the story, gave me a great big bear hug and told me "at the end of Preschool you can cuddle me in your arms again" I hadn't even mentioned preschool !!!

I would love to say that, telling the story completely transformed the saying goodbye at Preschool this week, it didn't. He cried as soon as we got to the gate but unlike the other times it seemed he was much more aware of other stuff, he was crying as I put his inside shoes on but he would stop to ask me - who's name is that (on the lockers), then boo hoo again and "who's shoes are they" and more boo hooing, its like the sadness at breaking up it wasn't consuming him completely this week, almost feeling he could let go..?

We have only one week of school left (Cy only goes 2 days) before Easter holidays, 2 weeks off, just as we are on the cusp of a breakthrough, its a bit frustrating. So over the holidays I plan lots of playdates with preschool buddies for him and the retelling of the story ad nauseum.

And a little reminder of how lovely and sweet Cy was at the time Owen was born.