"Dont bank on a diagnosis..."

We went to the psychologist yesterday and basically gave a detailed explanation of all that is Jaiden, she seemed nice enough and has promised to contact J's EIU teacher and his Paediatrician to devise some sort of plan.

This morning i took J to the long awaited Paed appointment. After some examination, some conversation and a letter from J's EIU teacher he decided Jaiden has a "Anxiety disorder" (oh really? i would never have figured...) and "mood disorder" of un known origin and when i quizzed about the whole WS thing and bumping up the Genetisist appointment he told me he wouldnt have thought it's a Genetic Issue due to his Gross Motor Skills being in the average range, he has been growing well over the last 6 months and that although he is well behind with mental development, he is learning and the delay is probably due to anxiety and mood problems holding him back. So in short he said the November appointment should be fine, and that i should not bank on getting a diagnosis as cases like Jaiden are rarely diagnosed with a "specific disorder". Well.
He also said that i may have to consider medication down the track,(i have been dead against this if at all avoidable). he reccomended we hold jaiden back from mainstream pre-school next year as he feels "neither Jaiden or the Teachers will cope" at this point and to do 2008 at the EIU again and see about mainstreaming pre-school in 2009. I do agree with this and i have been quietly stressing about how he would cope.
The Paed also gave me details for a Psychology team through a local university that will do a proper evaluation and treatment plan at very low cost, which is a bit of a blessing as the Psych we saw yesterday is $150 per session and is planning on fortnightly sessions indefinatly. While of course if we have to we will find the money somewhere, i would rather not be working more days as i would miss out on being with Jai, which kind of defeats the purpose anyway...

Tommorrow we are all heading down the coast for a few days, we havnt been for a year so although its only a short break it will be nice to "escape". Maybe we will get another breakthrough from Jaiden - last time we went down was the day Jaiden went from saying Mum, Dad, & No to all of a sudden speaking his first sentance...
"The sea is scary Daddy!!!!!"

Time Flys...

The 24th was my beaautiful son Liams 5th birthday. I cant believe how much he has grown up and what a kind caring individual he has become. To celebrate this occasion we held a massive birthday bash for him with a Pirate theme. So yesterday 25 odd adults and 16 odd children embarked on a journey accross the 7 seas to my tiny abode and proceeded to PARTY! I have learned a few things hosting this party,
1. No matter how well you rigg Parce the Parcel somebody will get upset.
2. I ALWAYS overcater.
3. Most kids will eat until they explode (or throw up alll over the rug.)
4. How cute and funny a bunch of 4/5 year olds can be!
5. You always forget something VITAL to the party's success.
6. These events are damn expensive!

The kids had an absolute blast tearing up the place having sword fights and generally running wild. The clean up wasnt too bad and you couldnt wipe the grin off Liam's face!
I was concerned how Jaiden would react to the party whistles, but he was by far the loudest kid out of all of them!
Oh and i will also mention a trick i have learned over the last week...
A great distraction from skin/nail picking when the kids are anxious is Bubble Wrap.
Jaiden isnt strong enough to pop them first go but after a while he gets one and keeps going, the skin on his hands is actually healing!

We are off to the Psychologist tomorrow and then the Paed on wednesday
~ deep breath ~
Maybe, just maybe i will be able to get into see a geneticist SOONER than November!
Fingers crossed we can get some answers. Well, official ones anyway.
I wonder what on earth will happen if it turns out he hasnt got WS after all? I must have looked up every behavioural issue, psychological issue, parenting issue, disease and syndrome there is, just to try to find answers and rule WS out in the hope that maybe we can "fix him" with a pill or special program. But at the end of it all, nothing else 'fits' He is just so 'Williams'.
Now I think if the FISH is negative i would be almost dissapointed, as i feel i could write a thesus on this subject. I also have such a wonderful support network at my fingertips (Thanks guys!)I couldnt imagine starting again with somthing new, having so much to learn and so much to grieve.

running numb.

I went and saw the family GP today about Jaiden.
I said fairly bluntly that if they couldn’t find a way to get him into see a child Psychologist ASAP they would find themselves having to send me to one as well…
I know that I am pathetic to complain as my troubles with him are so very insignificant compared to the things a lot of you guys have been through, and I feel so guilty about it.
So im sorry, I guess it has just been a really long year for me, I feel like although I have accessed Jaiden all the help I can for now, it seems that I have really only crawled forward a few steps and done a lot of dancing around in circles, and waiting… its ALL about waiting, wait and see if he snaps out of it, wait 18months for speech therapy, wait for the next Pediatrician’s appointment, waiting lists for OT, Psych, Geneticists & School interviews.
I do know that I need to focus more on the things that we have achieved than the things that we are yet to achieve. I do know that repetition seems to be the best way of teaching things to Jaiden; I do know that I really have to learn to be more patient. I am emotionally wrung out, I compare me to a hormonal pregnant woman with my mood swings, lack of patience, and groggy constant feeling that isn’t dissimilar from drunkenness and the absolute exhaustion. Only this time I cannot make excuses about being hormonal, it won’t get better in 9 months and I do have to learn how to cope, because this is life now, nothing is going to change anytime soon and not ever unless I get off my ass and start making it happen.
I know all the theory…

I watched Forrest Gump the other night for the first time in about 10 years, and I cried the whole way through. Last time I saw it I remember being sad at the end but this was a whole new level of sadness, one that suddenly reached into my heart and tore it out, it all seems much to close to home now. All I could think through the movie is that this child could be mine, could be yours, and I pray to have the strength of the mother. Maybe im depressed. I need to get over it, get over it for Jaiden, for all the kids.
God, please just make it stop. Make that feeling of utter hopelessness go away, take away the emotions; I don’t want to feel anymore. It seems like I am stuck on the verge of numb and all I can feel is heightened emotions.
Maybe this is what it feels like to be Jaiden, raw emotions.
Oh God, I just want to be numb. Disappear to a desert island somewhere and never return. I don’t think I like Holland anymore, i want to go back to Italy.
Run Katie, Run.

grumble grumble...

Well its not even 2 O'clock and im WIPED. Partially because i didnt go to sleep till about 3am last night.
Jaiden woke up a cheerful cherub and all was well until Liam handed Lachie a shoe and apparently Jaiden wanted too... Then all hell broke loose.
An hour later he finally stopped screaming (short attention span pah!)and it was time to drive to Oma's and drop off big and little so i could take middle to the "ferry fopters" aka speech therepist. I played some Bob Dylan (Jai LOVES Bob Dylan) on the way and he calmed down to a meditive thumb sucking state only making squeaking noises at me everytime the CD paused while the song changed.
When we got there he was fine until he got out of the car, Bob stopped and suddenly he realised where we were, then the screaming started again this time "dont WANT ferryfopters!!", and i made a mental note to get an old walkman from somewhere and put old Bob onto tape...
At least where we go to get therepy Jaiden can carry on like a pork chop and the only 'looks' you get are sympathetic ones. After dragging Jaiden up the long hallway to the room, and some basketball as an ice breaker we convinced him to sit down at the table. For approx 2 1/2 min, more screaming, 15min and more basketball bribes later we gave up and went home. The ST is the most understanding lady to have delt with Jai thus far and has already seen his Angel and Devil personality switches, she is the one who has quick smart refered us to an OT and a Psychologist. Unfortunatly the waiting list for OT is 6months and the waiting list for Psych is much the same - i am going to go back to the GP next week and tell her if she cant find a way of getting Jai into Psych ASAP i am going to need it myself!
Straight after the appointment we had a photo session booked for all three little darlings (i dont know where my head was when i booked that time slot!) I have already rescheduled twice and so i decided to go despite Jai's mood - He was HORRIBLE on the way there, PERFECT for the shoot and HORRIBLE while i picked my packages and all the way home. At least the photo's looked great!

Babies babies everywhere...

Yay! Yesterday both my best friend and my sister found out they are pregnant!!!!
Im very excited as my sister had a lot of trouble falling pregnant with her daughter (just about to turn 2) and so she was not expecting an easy run this time.
And my best friend suffered a miscarriage at 14weeks with her second, the baby would have been due at the beginning of August so it has been a hard month for her and she is absolutely over the moon! YAY! So it looks like May will be a busy month then!

I took the kids out this morning by myself to a local place that has an awesome kids area and on Wednesdays they have face painting and balloon modeling. I used to go every week with my friend when Jaiden was little but she went back to work and It has just been to daunting.
Jaiden and Lachie were a little bit overwhelmed by the whole thing and Liam immidiatly made a friend and ran off to conquer the Bad Guys, I convinced Jaiden to get his face painted like Spiderman – but he insisted on waiting for a particular lady to do it. The place was FULL of kids Jaiden’s age running around playing adventure games with each other, Jaiden tried – he walked up to some kids and said “my names SPIDER MAN” in a growly voice and ran around in circles for a bit, One of the kids said something to him which I didn’t hear but Jaiden started having a melt down screaming “I AM SPIDER MAN” over and over at the top of his lungs until I could finally distract him.
I got a few funny looks from some parents and couldn’t take it anymore, I packed up the kids and left much to Liam’s disappointment.
I need to learn to ignore those looks, I am sure that half the people don’t mean anything by it but when it happens it feels like their eyes are burning through me judging my son and my parenting. I am becoming a hermit, it feels easier that way but I know it’s not good for the kids.
I must say I almost enjoyed a huge meltdown yesterday because my Mother in law and niece were at my house. MIL keeps saying there is nothing wrong with Jai and that he will grow out of it and that I just need to discipline him better. Yesterday gave her a little more insight I think...

Bowie

No this post isnt about David, but about my dog. Who incidently was NOT named after the singer, but after a dream...
At 14 I had been seriously looking for a dog for months and i kept having a reaccuring dream about a black & white dog named Bowie frolicking with a blonde haired girl aged around 3 or 4. Oneday i got a phone call from my mum who was shopping at the time and had spotted a "gorgeous black & white dog" in the local pet shop. Now my mum HATED dogs with all her might and i had wanted one since i could remember so this phone call was an oppertunity too good to refuse... I caught the next bus to the pet store and met up with mum. Mum went for a coffee while I went into the shop and saw some pups and i wasnt all that phased they were cute but not the dog from my dream, i was just about to leave when a tall red haired man walked out of the back room holding a black and white pup. It was my Bowie a beautiful male Border Collie. After some chatting with the tall red haired sales assistent i went and spoke to my mother and got her to come and sign the paperwork. He was mine.
A few weeks later i popped back into the store to buy some more food and got chatting to the Tall Red Haired man again, this time i mentioned i was looking for some casual work and dropped off my resume while i was there. That afternoon i got a phone call and a job.
Unfortunatly when Bowie was 6 months old he started losing weight, having bad dihoreah (sp?) and becoming increasingly lethargic, after several vet visits i was repeatedly told that i wasnt looking after the dog properly and they didnt believe that i was feeding him properly. Now working at a pet shop i had learned alot about Dog Nutrition and despite me feeding the best food available in the country the dog kept losing weight my 20kg Border collie now weighed 7kg.
I was talking to the vet who came and vaccinated the pups at work oneday and he told me to bring in Bowie - He did and examination and some bloods and 24hrs later i found out that in fact I wasnt Bowies problem - he had Endocrine Pancriatic Enzyme Insufficiancy - which basically ment he didnt absorb any nutrition from his food. We put him on special Enzyme Tablets and a short course of Steroids but he was so far gone already we didnt expect him to make it to his first year. Just over 1 year later Bowie was still a featherweight but going strong much to everyones amazement. I moved out of home into a share house where i met Holger, We got on well and so did our dogs he had had a German Shephard and used to have a second dog who had sadly died but coincidently of the same disease Bowie had! Bowie is now 7 years old and has out lived Peppy the German Shepherd and been around to meet Holger and my three gorgeous children each of whome he has adored. He has had ups and downs and amazed Jim the Vet numerous times with his will to live.
Tonight Bowie started limping with both front and hind left legs. We heated up his pet pad and cuddled him goodnight. I know that his run is coming to an end now, he is losing condition and i think this time it might be cancer. I have alot to thank him for, my job which i am still doing 7 years later, my husband, helping my children learn to love animals, always listening and never complaining and also for teaching me to never give up hope and to always trust my gut instinct. I still wonder who the blonde haired girl was frolicking with Bowie back in my dream, perhaps i was just seeing a younger version of myself. I guess i will never know..
Thanks for everything Bowie. I love ya.

Yellow

The song “Yellow” by Coldplay came on the radio and the bright blue eyes sitting in the backseat of my car immediatly lit up followed by an excited gasp of “make very louder mummy!!”
His favourite colour was now a song. Jaiden’s life was complete.

The smallest things that bring a child such incredible joy – spotting new baby fish in the fish tank emergeing from their eggs, twisting a balloon into the shape of a poodle, spinning joyfully around and around in circles and lying on the grass watching the clouds float slowly past.
Its these ‘little things’ that we take so for granted that actually define who we are as people and help us to learn and live in our own worlds.
Watching my son take so much joy from hearing this song made me think for a while.
He talks a lot and understands a little, feels emotion to the highest degree, holds his hands high and hums a little more than most children his age. He is oh so very pure. Tells it like he feels it, enjoys the beauty in everyone and everything and doesn’t hold back a minute from running and frolicking in his own special world.
I think it’s something we all wish we could do – Just tell it like it is, stop and admire the beauty of the world around us and be whoever we want to be. As far back as I remember I was always trying to do stuff to impress someone else, to not be embarrassed about something and to ‘fit in’ to other peoples worlds. Having children has helped me understand the importance of individuality and letting children be themselves, while still guiding them in the right direction.
I often get saddened and scared when I think that the future for Jaiden might not be that of ‘typical’ children, that he might not be ‘successful’. But really are they his dreams or mine? And all any of us want for our kids is for them to be happy. Success should be defined by state of being not by which university someone attends or what their career is.
As long as he has love around him and people write songs about colours, I know Jaiden will be ok because he is very much loved and he will always be happy and secure of his place in his own world.

Now if you will excuse me I am going to clean up the wee that Jaiden just did on the floor of the play room and remind myself that all any of us can do is our best.

ups and downs

Life is full of ups and downs, i guess thats just the way it is - enjoy the ups and try to make the best of the downs.
Baby Austin is still having tests at this point there is no more news, but i will keep you updated.
My computer screen died last week and i thought i would go down with it! thankfully we borrowed an old moniter yesterday so i can get back online! How pathetic am i , i cant even go a week without going on the internet!
Jaiden had a good week, 4 days without an anxiety attack!! thats a new record (he averages 3 a day) unfortunatly one he will have to break another day as when we returned from pre-school today he had a meltdown about who-knows-what and was inconsoleable for 45minutes. Oh well all in all a great effort!
Its funny, there is a little boy in Jaidens class with one of the Autism spectrum Disorders - they had a Special Ed teacher sit in on the class today and she told this little boy to go and hang his picture up to dry - of course he didnt move and jai's teacher Jenny said "oh he wont do it like that, he will have to finish then you can show him" so this teacher says "nonsense" grabbed the little boys hand and pulled him and his picture from the seat of course the kid starts screaming like a banshee.
Jenny was not impressed (nor was i)and they finally got the little boy to sign "finished" and put up his picture - i just couldnt believe the nerve of this women who doesnt even know the kids trying to take over and ignore their teacher like that!
Jaiden has really good coordination and gross motor skills - its his only non WS trait. At preshool today he watched a kid using those little plastic stilts that look like buckets with a rope handle - then he proceeded to grab some and walk around on them- its funny his older brother is as smart as a whip, but has the coordination of a lemming (takes after his mother!)
Jenny commented - oh well if he cant get any other job he can always be a stilt walker when he grows up! Ha!!