Apocolypse

I was awoken in the wee hours of wednesday morning by what can only be described as the sound of the apocolypse.
As the massive explosion rocked the house and reverberated around me, i desperately tried to make sense of the noise,
The end of the world!!?? No, im still breathing...
A Plane has crashed on the house next door? No screaming...
Someone has bombed Canberra!? But why? Yes we are the capital of Australia but the prime minister only spends a few minutes here every year, dont bomb us! Bomb Sydney!!
My Husband and i both sat bolt up right in bed and i just murmured "Oh my God"
Holger then turns around to me and says "Wow! i havnt heard anything like that since Germany!" - Now hang on a minute, Holger left Germany age 11 and he is WAY too young to have experienced World War 2,
Me: "what?!"
Holger: "Must be quite a storm!"
Me: "Storm?? What ?? You mean Bomb??"
Holger: ~laughing~ "That was thunder!"
Me: " F*** !! I thought we were all going to die!"
Then the rain started...
With my heart beating like a cartoon character i slowly drifted off to sleep still wondering A. if i would wake up in the morning or not and B. How Jaiden DID NOT wake up at all!?

Whats your name?.. As copied from Kerry :-)

I thought this was amusing so I copied this from Kerries blog :)

1. YOUR ROCK STAR NAME: (first pet & current car),
PC Nissan
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie), pepprmint-chocchip

3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name), K-Mor

4. YOUR DETECTIVE NAME: (favorite color, favorite animal), Purple tiger

5. YOUR SOAP OPERA NAME: (middle name, city where you were born), Suzanne Canberra

6. YOUR STAR WARS NAME: (the first 3 letters of your last name, first 2 letters of your first), Morka

7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink), The Blue Malibu

8. NASCAR NAME: (the first names of your grandfathers), Fredrick George

9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy), white musk cadbury

10.WITNESS PROTECTION NAME: (mother’s & father’s middle names ), Dorothy Jens

11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter), Cooper Christchurch

12. SPY NAME: (your favorite season/holiday, flower). Spring Lilly

13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + “ie” or “y”) Grapes Cargo Pants

14. HIPPY NAME: (What you ate for breakfast, your favorite tree), Toast Silverbirch
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”), The Sleepign Sunshine Tour

'Williamsy'

Hmmm, Jaiden looks particualy 'Williamsy'today.
I often dont notice anymore. Its just Jai. His WS style features are subtle anyway and his hairstyle seems to hide it quite a bit. Though one good thing about this syndrome - these kids are really cute!
But today It seems very obvious. From first thing this morning when i woke up to a cheeky grinning face looking at me. Its been so obviously on his face and in his body movements all day - large mouth always a bit open, big lips, puffy eyes and you know the way they hold there little hands slightly up and some fingers curled and some out? I look at him and just see 'Williams'.

Spring has truley sprung here, our grass has greened up considerably thanks to our water tank investment over the winter. The daffodils are flowering and its so beautifully warm outside. Unfortunatly i seem to have hayfever again this year - im not sure what is causing it, i had never had it in my life before until moving to this house two years ago!
I got a mini-trampoline from mum today but Jaiden wasnt impressed "too small!! Want higher!!" Our neighbours have a lovely big one and they have painted a big white spot on the middle of it to try and help Jai remember to stay in the middle when he goes on it. Maybe one of those big new fangled round tramps with the big safety net is in our future...
Somebody pointed out that Christmas is a mere 3months and 1 day away! Every year i promise to organise myself early but i always end up starting my shopping Christmas Eve 1 hour before the shops close. So this year i again make this promise and i will top it off with plans to lose weight for my New years resolution!
Wish me luck :-)

Frustration vent

OK. I am officially sourcing a new GP.
I popped into the GP to drop Lorelai off (her mum sees the same doctor as me and so we met up there).

Jai was just sitting in the stroller with his hands up a bit as they often are doing his growly'hummmmm'noise (autistic style).
and the GP passed by and says to me "dont worry so much, he looks like a regular kid"
It just struck me as an odd comment out of nowhere, I hadnt even spoken to her at all and especially because in reality i would have thought most almost 4yr olds probably dont usually sit in a stroller
hum-growling ...
Maybe Jai is completely normal and all the other kids are super children or something.
N E way this just proved to me that she is only humouring me with any tests she does and apparently thinks im crazy.

Ouch!

Poor Jaiden, he was having a really good morning and very excited about going to see "my Jenny" (his EIU teacher), then when we dropped off Liam at pre-school he got a little over-excited about jumping out of the stroller and going on the play equipment and before i could stop him he fell head over heels smacking his nose and mouth on the bottom of the stroller and his poor little head on the pavement :(
He was shocked by the whole thing and wouldnt let anyone touch him just kept screaming and stumbling backwards, blood pouring everywhere.
It looks alot better now he is all cleaned up and i think the thing that upsets him most about the whole thing now is not being able to go to see his Jenny today!
You cant see it clearly in the picture but the top of his nose is swollen really bad and he put his teeth through his top and bottom lips.

....and also i thought i would add in an amusing picture of my cat trying to get my Lizard that is trying to get the fish!

The dangers of sleepwalking!

I was just catching up on blogs and i heard the kids bedroom door open, i assumed it was Jaidens first waking (he wakes several times a night)but lo and behold,
Liam sort of walk-run-stumbles out of his room straight into the kitchen where he proceeds to pull down his undies and gets ready to do a wee - right on the kitchen floor! - when i figured out what was going on i ran over and said "WHAT ARE YOU DOING!??" and he said "im just going to the toilet" in a puzzled voice i picked him up and put him on the toilet just in time and he wandered back to bed with this dazed look on his face!
Sleep walking is one thing, but i sure dont want wee-ing on the kitchen floor to become a habit!

Hearts

The absolute worst thing about Williams Syndrome is the fact that most of these beautiful children have heart defects and many of these are severe.
I was in tears earlier reading Noels post about Abi and all they have been through. We are SO lucky that Jaiden only has a murmur, and i am thankful for that everyday.
Today beautiful little Clare is having a catheter put in her heart, not her first by a long shot and she is only 2 years old. I am praying for her to get through this easily, she is a very brave and strong little girl. I am also praying for Clare's parents Theresa & Shawn, i so greatly admire there amazing courage and strength through everything they have been through.
Good luck Clare!

Bittersweet

Today was strange...
After dropping Jai at the EIU i took Lachie to go and visit my sister and her daughter Amelie (who turns 2 tomorrow!). On the way to my sisters Lachie started piping up from the back seat "6,7,8,....10!!!!" and after a few add-ins from me he counted 1 through to 8 skipped 9 and yelled 10 with great gusto. While this was a fantastic effort on his part and i am very proud of this acomplishment, it also made me quite sad. Jaiden is 4 soon and he has only got the 1 to 10 order recently and still often makes mistakes when counting and he just doesnt really grasp the 'concept' behind it all.
After arriving at my sisters we chatted and i was playing a color matching with Amelie who now at 2 seems to know all of her colours flawlessly. Sighhhh....
Remembering back to Liam i know that this is fairly normal for a child this age and while i want to tell myself that its because Amelie is exceptionally smart i can also see Lachie catching up. I am afraid of the day Jaiden is overtaken by his brother two years his junior.
I took Jaiden to the GP this arvo to get a written "mental health plan" which basically entitles him to 6 free Psychology sessions (at $150 a pop this is a big financial help).
The GP gave me the letter and the 'dont pin all your hopes on a diagnosis and why do you want one so badly as his treatment wouldnt change if he has WS or not' spiel and we went on our way. Jaiden had had well and truley enough at that point and started screaming a high pitched 'im-being-murdered' scream whilst half refusing to walk and half trying to run off, yelling "You hurting my hand mummy!!!" as i dragged him (gently) to the car. I put on my brave face and avoided eye contact from the annoyed and mildly concerned passers by.
Here doctor, this is exactly why i want a diagnosis- its a reason. an excuse. It will help me feel less of a bad mother and i will have an answer i can smugly retort if challanged by a stranger about his behaviour.
Now as i type, Jaiden jumps off the sofa where he is watching a movie, comes up to me and gives me a cuddle "i love you mummy".
I love you too Jaiden.

Hyperacusis

Can someone please expalain to me the reason the sound of a Vacuum cleaner can induce a massive anxiety attack, yet the sound of purposely squeaking the air out of a balloon is funny?

Well... ther you go....

You learn somthing new everyday....
I knew my Hubby had had problems with his legs as a baby, had surgery for strabismus (although still obvious when tired) and was slow to deveop.
I decided to probe my MIL for more information due to Jaidens issues and this is what i got:
When my husband was born he was unable to voluntarily move his legs. They would move if a reflex point was pushed but otherwise remained straight out. His doctor in Germany set up intensive physio and wrote the name of the condition down and that was it. With the physio he gained movement although of course he was slow to roll crawl & walk etc. He still walks and runs with a bit of a gait now (but dont tell him that!). I asked her to find the name of this condition for me and as it was written in German i traslated it on the internet and it turns out its a form of "Spastic Cerebal Palsy" just luckily VERY mild. Well there you go.
I havnt told my Husband about any of this (and he doesnt read the blog obviously) i dont know if i should... I dont think he would want to know as although he has come along way in the 'accepting people for who they are' stakes since we have had Jaiden, knowing the English Translation for this might upset him. He knows that he had problems as a baby but his mother never discussed it with him and he left Germany and came to Australia when he was 10 and never saw a doctor again... It just wasnt spoken about. I guess he doesnt "need" to know... cognitively he is fine and it doesnt affect him now anyway. The turned eye is unrelated.
Well i guess it doesnt relate to Jai in anyway but was not exactly what i expected either!

One small step for man.....

The Coast was beautiful. I want to move there, green grass dam's overflowing with sparkling water and the sea, with its mystical beauty and roaring waves. The resort we stayed at was just as perfect, ocean view villa, mini golf, giant jumping pillow (which the adults were allowed on am massive playground and 3 different swimming pools ( one heated indoor!) Oh and as it was off season the 1800 people capacity was reduced to 6 not to mention all of this breakfast and a dinner discount for $95 per night per family! Oh we will return!
Jaiden coped brilliantly with the ocean - he was a tad reserved at first but his interest soon out weighed any anxiety, and he was running around the beach with his brothers, squealing excitedly when a rogue wave lapped at his toes. Bliss....

Back home to reality with today bringing Jaidens in-school EIU evaluation report. I was a tad nervous as i stepped into the school grounds, even though i have been talking openly all year with Jai's teachers there is sothing so official about that little piece of paper. Not to mention i had oh so briefly discussed Williams Syndrome with Jais teacher at the end of the last session and had told her to read up and let me know her thoughts...
As i entered the class room i was somewhat surprised to see two well dressed "official looking" ladies seated at a desk next to Jaiden's teacher Jenny.
Jenny greeted me and warmly and introduced me to the ladies who were from the early education department and there to offer advice and sit in whilst the report was discussed and then make some decisions about my son's future.
The report was as expected really, Gross motor is going well,Play skills are developing, persistent fine motor delays, verbal expression very good, receptive expression not so good, Volitile emotional state and anxiety, sensory issues and Fantastic social personality. We discussed a plan which includes continuing the use of viual aids for activities to help Jaiden remain on task and less anxious about what was happening next - routine seems to be becoming very important to him. We also discussed what the paediatrician had said re school, and we decided it would be best for Jaiden to go to mainstream pre-school as well as the EIU next year as this will challange him and help him socially (other EIU kids are all very withdrawn)and hey, if it doesnt work out we can always pull him out and try again the following year. Everyone also agreed that OT is an important thing to add into Jai's rapidly growing Therepy list and they may be able to push ahead of the 6-8 month waiting list. Then Jenny mentioned Williams Syndrome. She said the first site she read she thought No, and then she read several more pages and looked at some photographs and decided that actually WS does seem very 'Jaiden' and that she can certainly see what i mean. She and the other ladies agreed that we should certainly keep following it up with the geneticist. Wow. An 'offical' person actually listened. There i guess we have one small step for man and perhaps one giant leap for Jaiden!
All in all i left feeling satisfied that Jai is where he should be and we are now heading in the right direction for him.