JINXED

Today when i arrived at preschool Cy met me with "mum I had a miserable day". He had cried, he tried hiding at circle time, he felt sad. The teachers who are lovely managed His feelings and he was playing happily when I got there. This is the last session of the week he won't go back till next Tuesday, thankfully.

I knew it was risky taking him this morning he was awake during the night, nothing was wrong, he didn't call out for us, he just lay awake making train noises, weeshing and whooshing for a couple of HOURS, Col got up to him to tuck him in and get him back to sleep and asked why was he awake (it was 3 in the morning) Cy told him "my head is full of trains!" and he asked if Cols head was full of tractors (Col likes vintage tractors), Col couldn't help but smile.

So Cy slept in this morning till 8.15 but I got him to eat his cereal, get washed and dressed and to preschool by 9 am. He was fine said goodbye to me and was a bit anxious but only as much as he had been the past 2 days. But it all started to get messy at circle time, he didn't want to participate and tried to hide, the teacher ended up sitting him on her lap, and after circle time sad feelings came and he cried.

I am beating myself up about even taking him today, next time I will keep him home if he is up in the night. I should know better because unfortunately being awake and having a head full of trains at night is a way too regular occurrence for Cy. He can go a week or so without waking and then out of nowhere we will have a bad run and he will be awake for hours each night. But it's the days that are by far the worst. When he finally wakes after sleeping in, he is always fractious, demanding and tense, not his best days and not my best either, my patience quickly runs out.

I am so tired of worrying about Cy, even before he was born I worried, he hardly moved in the womb and was lying sideways (transverse) from the time he was about 24 weeks and I went into labour with him in that position and needed a csection to cut him out. He was difficult to feed, he didn't smile till he was 8 weeks old (my oldest boy was giggling at 8 weeks old!), he was all twisted up from his strange position in the womb, he didn't walk till he was 19.5 months, he didn't put two words together until he was 33 months, he needed glasses by his 3 rd birthday, he's had constant fluid in his ears, he has these weird eczema hot spots from the time we introduced solids.( we finally worked out it was oats causing it after 8 months of an elimination diet and allergy testing).

He has had physio since he was 8 weeks old, he has had speech therapy on and off since he was 2, he's had his adenoids out and ear tubes in, he wears glasses (he has just been diagnosed as also having astigmatism), he has some kind of weird foot thing and has to wear night splints and orthotics, we finally worked out it was oats causing the hotspots after 8 months on an Elimination diet and allergy testing, he still has dietary issues and he still can't button buttons or do more than a line or a scribble with a crayon.

So in short this kid has issues....But no diagnosis...yet

The latest speech assessment said he was all caught up to his peers in speech however it highlighted a problem with pragmatics, I am not really even sure what the hell pragmatics are but in a nut shell the ST sayes this indicates he has autism or at the least Aspergers (which is on the spectrum anyway) it is just a different way of saying you have high-functioning autism.

Last week, before preschool started, I booked him in for a session with a psychologist (on the recommendation of our pediatrician) for his anxiety related to preschool based on last year. But at the session the psych told me she would tell me "what to do" but that I had to "do the work" and I thought fair dinkum lady I have enough to do, enough on my plate remember, how about you work with Cy! She also hinted at an autism diagnosis ......blahhhh

anyway I have found out about a psych unit at the university here that run therapy sessions and clinics for children with anxiety and .......drumroll...please, autism, the therapists there work one on one with the children using role play and the parents observe. We have put our name on the (short) waiting list

So I had this autism idea in my head and lots of anxiety about how he would go at preschool especially after a complete bomb when I tried to start him there in September last year.

Then today happened, which in hindsight is not such a huge deal but I am having a meltdown.There is always more to do, more gaps to fill, more questions to answer and more anxiety. All of this ( the longest and probably most self indulgent post I have ever written) to say I am so over it! Blarrrrrghhhhhhhhhhh

OMG he likes it

Cy has had 2 mornings at preschool this week and he is doing great. I seriously cant believe it, cause last year when we tried it was a DISASTER he never lasted more than 20 minutes before they rang me to come get him. I am still nervous -especially about jinxing myself ! But I think the new beautiful teacher has made all the difference.

Here are the boys on the front step on the first day of preschool.

I think Owey looks apprehensive unlike Cy who is as happy as a pumpkin ! And what is with Oweys hair? I don't know ? I dont remember doing like that? It's all Crusty the Clown (from The Simpson)s....blah

Then Owey spontaneously leant over and hugged Cy and I thought ahhhh how cute.....but now I look at it, I think the stinker is just trying to suss out what's in the bag!

Owen is loving preschool too, each morning and afternoon he gets right into playing and even joined the morning circle this morning without any prompting, I know when it comes time for him to start he is going to just slip right in, but that's for later in the year.....

Our new therapist!

Last week I had a friend from down the road come over, she has three girls and the 2 youngest came over with her, they are 12 and 7.

So while we mums were talking the 12year old -Bonnie played with Owen and Alison the 7 year old played with Cy.

Cy and Alison had a blast they played rocketships in the backyard, they played doctors, they had train races and climbed our apricot tree to eat loads of ripe and unripe apricots. Suddenly I felt like maybe Cy might be okay at preschool this year, just a flicker of hope there.

And Bonnie wow where do I begin, she was amazing with Owen playing with him for 2 hours, she is so intuitive, she follows his lead when playing and keeps things interesting, she had so many turn taking "conversations" with Owen I am sure his jaw was aching afterwards, actually he was so tired that he fell asleep when Bonnie was reading to him so she put him to bed and tucked him in! Bonnie was better than any therapist! So what did I do, I hired her on the spot.

She is going to come over once a week to play and talk with Owen and i have also asked her to do the Nuffield cards with hiim and all for the princely sum of $6.50 per visit. She has been over already this week and Owen taught her a bunch of signs which she loved learning. I asked her to come for an hour but she spent probably 2 hours here and Alison, her sister came to, to play with Cy apparently she was busting to come and play again because they had, had such a good time the prevoius week.

I feel like I have hit the jackpot !

That moment

I haven't posted these photos before.

Owen was born 6 weeks early by CSection, he was delivered right onto my bare chest.

He stayed on my chest for a couple of hours, at first he was licking and sucking his hands and my chest and locking his beautiful, dark, ocean blue eyes with mine and then after a bit he fell asleep snuggled against me.


It was then I wrapped Owen up and handed him over to his dad for his first cuddle, I asked Col for the camera to capture the moment. I took a couple of photos and then stopped, and really looked at my son, but this time I saw something else, and I felt a flicker of panic. I asked Col "do you think he has Down's Syndrome? He rolled his eyes and softly shook his head no, and went back to the moment - holding his newborn son for the first time.

But I felt I had just stepped onto a trapdoor, which threatened to open and sweep me away into an abyss. I couldn't move, couldn't breathe, I didn't dare. I wont ever forget that moment. The sickening anxiety and dread I felt.

So, a couple of days ago I was looking through a bunch of photos on the computer and I found

that photo.

That moment.

The moment when, for the first time I thought my newborn son had Down's syndrome.

I can never forget how that felt.

But now when I look at this picture I can also see...

an intensely proud father cherishing his newborn son

Time is healing my wounds

Giving me perspective

and the clarity

to see the beauty that was always there.

Summer Update

Well we are starting to finally enjoy some summer weather here!

Days by the river and days down at the beach, buckets of water in the backyard and lazy dinners outside on the deck. The kids are going to bed later, life is pretty relaxed. Love this summer holiday break.



About a month ago I wrote to our local member of parliament to complain about the lack of therapy for Owen (therapy here is meant to be free - funded by the government), he was very sympathetic and guess what since complaining to him Owen has had speech therapy very week ! What a shame I have to jump up and down and make an ass of myself to get him some therapy on a regular basis! He is doing well with the Nuffield dyspraxia cards -slowly professing, making new sounds, even doing a M,mmm sound for mum now, I'll take it!

He has progressed so slowly with his talking it is a bit worrisome, I know he will talk but it is so painfully slow and I know he thinks so much more than he can say.

I still struggle with how much therapy is enough or if I am doing enough for him, with him. Well that's not true, what I mean is I could be doing so much more with him, I find some kind of balance but I know I could being so much more. Like he showed me the other day that he understands counting, we were sticking foam cats onto paper using paste when he touched one of the cats and said one, then touched another saying "ooo" then I touched the next cat and he said "eeee" . I was totally shocked, and felt so guilty as I have never done any counting with him before and I guess he has learnt this incidentally, from books or songs.

Mind you he still seems to have no concept of big and little or under and on things the speech therapist has been working over the past few weeks with him. I even detected some frustration in her voice last week when working on big and little! Maybe she thinks he does know it but doesn't show her? Dunno. But I felt myself prickle and I thought jeez I fought for this therapy and now I am not sure if I like it!

His potty training goes well, for weeks pooing in the toilet, and then out of the blue usually because he is distracted playing with a toy he will forget to tell us and go in his nappy. In the past week he has been telling us he needs to wee, but it is not consistent and frankly I don't really feel like training him to toilet for wee just yet, today I have put him in undies but only cause it's so hot and I certainly don't expect him to get it just yet, I think I will save myself the frustration for a few more months yet.

What else? Owen is running everywhere! He is like the fireball of the family, the rest of us are so relaxed but he bolts around everywhere! I think he is letting out all that frustration of not being able to walk all those months when he wanted to but couldn't get that body to do what he wanted it to do. He is growing steadily still, he is 90 cms tall and weighs about 14.5 kgs (a bit chunky but okay).

We have some concerns about Cy his older brother, and they wonder if his delayed motor skills could be cerebral palsy and if his encyclopedic knowledge of Thomas Tank and dinosaurs and lack of peer friendships is due to Aspergers. I feel quite guilty about it, nothing is confirmed yet.

We do some testing nest week ...i am quite anxious, but I want to understand him better and help him where we can to be more socially at ease, maybe even go to preschool this year, we tried last year but it was a disaster, just too stressful for me! Stay tuned.....

A quote

A friend of mine gave me a card when Owen was born it had this quote on it

"common characteristics observed in people with Down syndrome: natural spontaneity, genuine warmth, penetrating clarity in relating to other people, gentleness, patience and tolerance, complete honesty and the ability to engage in the unfetted enjoyment of life's gifts"

I don't know where this quote comes from, but when I found the card again the other day I smiled, remembering the comfort it brought me in the weeks after Owens diagnosis. Thanks Helen!

Medical bullying

I can't figure out what to say about this this article .......I just know it could all too easily have been my story. Given the vulnerable state a pregnant woman finds herself in when confronted by medical bullying, given no time to think, given no time to consider or investigate the possibilities of
a life worth living