Well its 12:25am where i am right now, so an official MERRY CHRISTMAS! to everyone :)Tis the morning of christmas and all through my house, not a creature is stirring, except perhaps the cat... the stockings are placed on the table with care, in hopes that a fire place might one day be there!
I hope everybody has a wonderful day, take care and i hope Santa has been kind to everyone!
Monday, December 24, 2007
Friday, December 21, 2007
A friend and i headed off to the local mall in the pouring rain yesterday evening with the intention of doing some last minute Christmas shopping.
As we drove along headed towards a roundabout we noticed a gold coloured ford exiting rather quickly on the other side of the road, suddenly the car skidded on the wet surface and then the back tyres slid out before completely losing control .
I watched the scene in apparent slow motion as the car spun off the road, became momentarily air-born and clipped a tree seemingly tearing the whole left hand side panels, windows and doors from its body, a huge branch from the tree fell crashing onto its roof as it disappeared down the embankment and out of sight.
Oh my god!
I grabbed my bag fumbling for the phone and calling 000, a monotone voice picked up and enquired calmly, “police, fire or ambulance?” um.. . we hadn’t even come to a full stop yet and the car was totally out of view. “Police” i managed to stammer, and probably an ambulance – hang on i don’t know yet.
We dived out of the car and straight down the muddy embankment to the remains of the gold ford, a young bloke quickly got out, and apart from a few little glass cuts, he looked surprisingly unhurt. He then helped another man from the passenger side, the passenger stumbled awkwardly and fell to the ground before sitting up and looking very shocked “what happened?” he asked.
Thankfully the man didn’t have any obvious injuries apart from a few minor cuts, shock and his wobbly legs, but after i quizzed him about pain in his leg he said he had just recently had an operation which is why he had stumbled.
While we waited for the police and ambulance to arrive the young men had a seemingly heated discussion in a foreign language and the young driver seemed very nervous pacing around and muttering, he was very worried about what his mother would say as it was her car he was driving –
I tried to tell him that she would get over it as long as they were ok that was the important thing. I noticed later that they said to the police that the other bloke was driving so i have a feeling he probably didn’t have a current licence or something...
A fire truck arrived before the police did – i am SURE i didn’t ask for a fire truck in my panic phone call, - but, i suppose it never hurts to get a look at some nice firemen! Plus they checked that the car wasn’t about to explode and gave basic first aid for the men. As they were doing this a tow truck happened by, “someone need a tow?” the bloke asked with a grin on his face that said “ ooh how lucky i am to stumble upon a job like this”.
Both the men were very lucky to escape with just cuts and bruises, unfortunately though, the ford didn’t make it.
After the police took a statement from us and we managed to squeeze the large tarago people mover we were driving out from behind the police car, ambulance, tow truck and fire truck we were free to go and continue our shopping trip. Take #2.
As we drove along headed towards a roundabout we noticed a gold coloured ford exiting rather quickly on the other side of the road, suddenly the car skidded on the wet surface and then the back tyres slid out before completely losing control .
I watched the scene in apparent slow motion as the car spun off the road, became momentarily air-born and clipped a tree seemingly tearing the whole left hand side panels, windows and doors from its body, a huge branch from the tree fell crashing onto its roof as it disappeared down the embankment and out of sight.
Oh my god!
I grabbed my bag fumbling for the phone and calling 000, a monotone voice picked up and enquired calmly, “police, fire or ambulance?” um.. . we hadn’t even come to a full stop yet and the car was totally out of view. “Police” i managed to stammer, and probably an ambulance – hang on i don’t know yet.
We dived out of the car and straight down the muddy embankment to the remains of the gold ford, a young bloke quickly got out, and apart from a few little glass cuts, he looked surprisingly unhurt. He then helped another man from the passenger side, the passenger stumbled awkwardly and fell to the ground before sitting up and looking very shocked “what happened?” he asked.
Thankfully the man didn’t have any obvious injuries apart from a few minor cuts, shock and his wobbly legs, but after i quizzed him about pain in his leg he said he had just recently had an operation which is why he had stumbled.
While we waited for the police and ambulance to arrive the young men had a seemingly heated discussion in a foreign language and the young driver seemed very nervous pacing around and muttering, he was very worried about what his mother would say as it was her car he was driving –
I tried to tell him that she would get over it as long as they were ok that was the important thing. I noticed later that they said to the police that the other bloke was driving so i have a feeling he probably didn’t have a current licence or something...
A fire truck arrived before the police did – i am SURE i didn’t ask for a fire truck in my panic phone call, - but, i suppose it never hurts to get a look at some nice firemen! Plus they checked that the car wasn’t about to explode and gave basic first aid for the men. As they were doing this a tow truck happened by, “someone need a tow?” the bloke asked with a grin on his face that said “ ooh how lucky i am to stumble upon a job like this”.
Both the men were very lucky to escape with just cuts and bruises, unfortunately though, the ford didn’t make it.
After the police took a statement from us and we managed to squeeze the large tarago people mover we were driving out from behind the police car, ambulance, tow truck and fire truck we were free to go and continue our shopping trip. Take #2.
Wednesday, December 19, 2007
I am not...
FIVE THINGS I AM NOT.
1. Graceful, LOL i must steal this one from Nancy as i am probably the clumsiest person i have ever known. Liam unfortunatly has inherited this trait from me and when ever he trips over thin air or knocks several things over at once, people comment that he is just like me!
2. Brave. Well it depends in what instance - i like to think that i wouldnt hesitate to run into a burning building to save a small child or tackle an armed robber but i appear to be physically unable to stand up for myself or my children with words - i managed to completely divide my husbands family just by being alive (but thats another story) and when it came to a confrontation i ran to my room and cried like a small child. I am sensitive and get hurt easily.
3. A good judge of character - I am a bit WS-y myself in terms of socialisation - i tend to trust anybody, no matter what their situation without hesitation until they burn me, unfortunatly this has resulted in being burnt a few times! Holger is quite the opposite and he tends to trust nobody until proven otherwise - i think its probably good as we ground each other!
4. Quiet, LOL - i talk WAY to much and this often results in me putting my foot in it, i seem unable to stop myself speaking sometimes and i spend the next few hours kicking ,myself thinking "shut up Katie, just SHUT UP!"
5. A thrill seeker,
I hate things that make me turn upside down, round in circles etc, Bumper cars are about as adventurous as i get!
1. Graceful, LOL i must steal this one from Nancy as i am probably the clumsiest person i have ever known. Liam unfortunatly has inherited this trait from me and when ever he trips over thin air or knocks several things over at once, people comment that he is just like me!
2. Brave. Well it depends in what instance - i like to think that i wouldnt hesitate to run into a burning building to save a small child or tackle an armed robber but i appear to be physically unable to stand up for myself or my children with words - i managed to completely divide my husbands family just by being alive (but thats another story) and when it came to a confrontation i ran to my room and cried like a small child. I am sensitive and get hurt easily.
3. A good judge of character - I am a bit WS-y myself in terms of socialisation - i tend to trust anybody, no matter what their situation without hesitation until they burn me, unfortunatly this has resulted in being burnt a few times! Holger is quite the opposite and he tends to trust nobody until proven otherwise - i think its probably good as we ground each other!
4. Quiet, LOL - i talk WAY to much and this often results in me putting my foot in it, i seem unable to stop myself speaking sometimes and i spend the next few hours kicking ,myself thinking "shut up Katie, just SHUT UP!"
5. A thrill seeker,
I hate things that make me turn upside down, round in circles etc, Bumper cars are about as adventurous as i get!
Tuesday, December 18, 2007
D Day.
Today was supposed to be D day. Diagnosis Day. Well in my head anyways. I am one of those people that gets told something will be in 'about a month' and i cling to the day exactly in a month and expect what ever it is to happen either that very day or before it. You can imagine my dissapointment when my due date with Lachie came and went by an entire week!
It just suddenly hit me. Its the 19th of December, as in 6 days until Christmas 8 days until my birthday and 13 days until 2008. Whoa, somebody slow down for a minute and tell me where the hell this year has gone?
I have been so focused on this day for the last 30 days that although i am aware of the impending holiday season i have been living in a fog of either not really caring or just living purely on auto pilot. Every single thing i have done since the 19th of November has been a far away thought, i have been a real Grinch, snapping at the kids, not achieving anything, being ready to cry at any given moment and being totally numb at the same time. It is ridiculous that a number should hold so much meaning to me, really i should be clinging to the word 'About' or nothing at all.
So another "due date" comes and goes, this time not for a long awaited baby, but more a long awaited fate of a baby.
I almost crashed my car twice today - both times my fault and both times because i simply wasnt paying attention. I am so physically worn out i think i could sleep right through Christmas and well into the New Year. But i cant. Its not fair on the children, its not fair on my husband. I am so pre occupied on 'needing' to know, that i cant think about anything else until i do. I know it doesnt change anything, i know it certainly wont change Jaiden, but i cant help it.
I want to start the New Year fresh and with a clear outlook on the future, i want to be able to go to Jaidens new teachers armed with as much information i can be that will help them help my son.
I was listening to him sing his current favourite song "Black bird" by the beatles today and was in awe of how this little boy could sing lyrics with such precision and perfect tone, yet could not always answer questions about his name, gender and age correctly.
I got told off by an grandmother at Liams school concert about letting Jaiden suck his thumb as it would ruin his teeth - i just wanted to scream at her that this was the very LEAST of my worries right now and if all that he needed in his life was braces on his teeth he could suck his thumb till he was 40 for all i care.
When Jaiden removed his thumb and the old women said in a sharp tone "See - look at his teeth, they are already ruined, that damage will take a lot of money to fix!" I just wanted to hit her. Instead i muttered something about his tooth problems being related to something completely different and when a few minutes later i got a death stare complete with hands on hips when Jai fell to the ground sobbing over nothing in particular i just stated bluntly "Look, he has special needs ok. lets leave it at that" and stormed off fuming and wishing i could have just told her to look up WS and call me if she has any questions. I am hopeless at standing up for myself, that is a New Years resolution of mine - if i cant stand up for myself then i need to at least stand up for the kids.
It just suddenly hit me. Its the 19th of December, as in 6 days until Christmas 8 days until my birthday and 13 days until 2008. Whoa, somebody slow down for a minute and tell me where the hell this year has gone?
I have been so focused on this day for the last 30 days that although i am aware of the impending holiday season i have been living in a fog of either not really caring or just living purely on auto pilot. Every single thing i have done since the 19th of November has been a far away thought, i have been a real Grinch, snapping at the kids, not achieving anything, being ready to cry at any given moment and being totally numb at the same time. It is ridiculous that a number should hold so much meaning to me, really i should be clinging to the word 'About' or nothing at all.
So another "due date" comes and goes, this time not for a long awaited baby, but more a long awaited fate of a baby.
I almost crashed my car twice today - both times my fault and both times because i simply wasnt paying attention. I am so physically worn out i think i could sleep right through Christmas and well into the New Year. But i cant. Its not fair on the children, its not fair on my husband. I am so pre occupied on 'needing' to know, that i cant think about anything else until i do. I know it doesnt change anything, i know it certainly wont change Jaiden, but i cant help it.
I want to start the New Year fresh and with a clear outlook on the future, i want to be able to go to Jaidens new teachers armed with as much information i can be that will help them help my son.
I was listening to him sing his current favourite song "Black bird" by the beatles today and was in awe of how this little boy could sing lyrics with such precision and perfect tone, yet could not always answer questions about his name, gender and age correctly.
I got told off by an grandmother at Liams school concert about letting Jaiden suck his thumb as it would ruin his teeth - i just wanted to scream at her that this was the very LEAST of my worries right now and if all that he needed in his life was braces on his teeth he could suck his thumb till he was 40 for all i care.
When Jaiden removed his thumb and the old women said in a sharp tone "See - look at his teeth, they are already ruined, that damage will take a lot of money to fix!" I just wanted to hit her. Instead i muttered something about his tooth problems being related to something completely different and when a few minutes later i got a death stare complete with hands on hips when Jai fell to the ground sobbing over nothing in particular i just stated bluntly "Look, he has special needs ok. lets leave it at that" and stormed off fuming and wishing i could have just told her to look up WS and call me if she has any questions. I am hopeless at standing up for myself, that is a New Years resolution of mine - if i cant stand up for myself then i need to at least stand up for the kids.
Tuesday, December 11, 2007
Goodbye EIU
It was Jaidens last day of EIU for the year and Christmas party yesterday.
Jaiden, Lachie, Lorelai and i arrived with the kidlets all very excited about the prospect of Santa coming to visit after a special Christmas morning tea, as we walked through the gates i saw an upset looking Jenny dissapear into the classroom and some of the parents milling around having a serious looking discussion, another parent was inside the class room talking to one of our local heads of the Education department with tears in her eyes. I sent the kids off to play wondering what on earth had happened. When i joined the serious looking discussion i found out that this lady from the department had rocked up this morning on the kids Last day and announced that they will be closing Gilmore EIU and that our kids will be split up next year between two other schools. Jenny will be sent to teach another group of children in a different area entirely and apparently everyone will just have to adapt as there is nothing they can do.
Everyone was upset and outraged about this as we had all been gaurenteed places and same teachers (you guys all know the importance of routine) and to find out now.. Even poor Jenny had no idea it was coming.
Jenny carried out the session really well considering and the kids had a great time eating, playing pass the parcel and overdosing on lollies. Santa arrived and it seems must have found the fountain of youth as he appeared to be 20 something he proceeded to give all the children presents (more lollies). It was quite amusing when he asked one little boys name and he replied "Liam" Santa says "Oh really? Thats my... um my friend... Mr Clauses friends name! Um HO HO HO.. heres your present." Amongst fits of laughter from the parents, so Santas real name is LIAM not Nicholas! At least if he had to stuff up it was the right group of kids to do it with!
There were some tearful very final goodbyes to the teachers more from the parents than the kids, we all credit our kids overwhelming improvements to the wonderful teaching skills of Jenny and Cathy, the great support they have offered to all of us and the genuine love they have shown our children over the year and they will be greatly missed. We all promised to stay in touch and organized to have a get together on the first day of the school term next year 4th February at a local kids centre. So next year its off to Bonython EIU as well as Big Pre-school for us, and Liam will be in Kindy, oh time flys!
Sunday, December 9, 2007
My day and Running Away
No, not me - even though id be lying if i said i hadnt contemplated it before.
Today was one of those Run Away days for Jaiden.
The child simply has no concept of danger and cars and he does whatever he thinks is funny at the time.
On Lorelai weeks, due to lack of car space when we drop off and pick up Liam from school we have to walk. We live very close to the school - 500meters at the most, but i always dread walking because of Jaidens unpredictable nature. The daily walk consists of Lorelai and Liam wanting to do a running race to this little Hut Shaped House thingo (its actually a toilet block on the edge of an oval)Now everyday they insist on racing there and of course Jaiden has to join in too, Lorelai and Liam are much faster than Jai so they run ahead and Jai takes off after them with his funny little head bobbling arm-waving side to side knee-sticks-out run....then halfway there Jaiden flops to the ground in a screaming rage because Lorelai and Liam are faster than him and i have to drag him for the next few meters before he gets distracted from his crying, gets to his feet and continues his funny little run the rest of the way to the house shaped toilet block. Once they reach their destination they all lie along the concrete bench and pretend to sleep till Lachie(in the stroller) and i catch up to them where i spend the next few minutes negotiating with them to hold onto the stroller and not keep racing because i know that if Jai chucks another Tanty he run and we will be getting too close to the road - damn that boy is fast.
Today is no different to any of the others, but today i dont seem to have the stamina for it - i have been in a fairly flatline mood of late and havnt had any major 'downs' in a few weeks - by the way for me these days thats some kind of record!
So walking TO school followed the usual pattern except the added swearing from me when we got back home and realised that i still had Liams school bag attatched to the stroller. So into the car we piled and we ducked passed his school to drop it off on the way to Jaidens school.
Lorelai was picking on Jai for something and he started to get quite agitated and she topped it off for him when we reached the school carpark by saying "this isnt your school Jaiden" so of course Jai starts bawling and yelling "IS MY SCHOOL, IT IS MY SCHOOL AND MY JENNY" to Lorelai and she kept taunting "no its not" in a sing song voice - i ended up snapping at Lorelai telling her not to be mean to Jaiden and she started bawling and yelling at me "Im not mean, im a nice person, im not a mean person!!" Then im trying to explain that SHE isnt mean what she said was. So i ended up dragging a screaming Jaiden, a sobbing lorelai and a stinky Lachie through the EIU pre-school gates and recieved a rather bemused look from the teachers!
Once i had disposed of child #2 i took #3 and #4 to my sisters to play with her daughter for awhile and got a change for Lachie and headed back for Jai.
On the bright side Jais teacher has figured out a way to scam some extra free pre-school hours out of our local government so that going to EIU next year doesnt take hours out of his 'regular preschool' time. YAY!
On the way to get Liam from his school this afternoon Lorelai noticed Jai's unique running style for the seemingly first time and said "why is Jaiden running like that? He looks funny!" so after i told her everyone runs differently and this is just how Jai does it she proceeded to run behind him trying to copy it all the way to the toilet block - It was very funny to watch!
After we collected Liam and were walking out the preschool gate Jai and Liam got out and the gate slammed in front of me before i could negotiate the stroller through it. Jaiden thought this was hilarious and immediatly took the oppertunity to run off as fast as possible looking backwards and heading towards a road. So im there screaming at Jai to STOP! and trying to open the top lock while little children are pushing through me trying to get to the gate first - Jai dissapears around the corner with Liam in hot persuit, and another mother came to the rescue sweeping up all the kids in my way and opening the gate for me in one action - I must have looked odd - running full pelt with this stroller screaming "JAIDEN STOP!! COME BACK HERE!!!" i ended up leaving the stroller and Lachie to their own devices and bolting after Jai finally catching him just before he ran onto the main street. UGHHHH!!!!!!!!!
I had him in a death grip the whole way home. I have been really trying to avoid it but im going to have to get one of those safety harness and lead contraptions for kids or im going to end up with a heart attack or worse - a flat child.
Well, tonight im going out for dinner with a womens group i am a part of - i actually attend only once in a blue moon but hey, im still invited to the dinner and tonight I need it!
Today was one of those Run Away days for Jaiden.
The child simply has no concept of danger and cars and he does whatever he thinks is funny at the time.
On Lorelai weeks, due to lack of car space when we drop off and pick up Liam from school we have to walk. We live very close to the school - 500meters at the most, but i always dread walking because of Jaidens unpredictable nature. The daily walk consists of Lorelai and Liam wanting to do a running race to this little Hut Shaped House thingo (its actually a toilet block on the edge of an oval)Now everyday they insist on racing there and of course Jaiden has to join in too, Lorelai and Liam are much faster than Jai so they run ahead and Jai takes off after them with his funny little head bobbling arm-waving side to side knee-sticks-out run....then halfway there Jaiden flops to the ground in a screaming rage because Lorelai and Liam are faster than him and i have to drag him for the next few meters before he gets distracted from his crying, gets to his feet and continues his funny little run the rest of the way to the house shaped toilet block. Once they reach their destination they all lie along the concrete bench and pretend to sleep till Lachie(in the stroller) and i catch up to them where i spend the next few minutes negotiating with them to hold onto the stroller and not keep racing because i know that if Jai chucks another Tanty he run and we will be getting too close to the road - damn that boy is fast.
Today is no different to any of the others, but today i dont seem to have the stamina for it - i have been in a fairly flatline mood of late and havnt had any major 'downs' in a few weeks - by the way for me these days thats some kind of record!
So walking TO school followed the usual pattern except the added swearing from me when we got back home and realised that i still had Liams school bag attatched to the stroller. So into the car we piled and we ducked passed his school to drop it off on the way to Jaidens school.
Lorelai was picking on Jai for something and he started to get quite agitated and she topped it off for him when we reached the school carpark by saying "this isnt your school Jaiden" so of course Jai starts bawling and yelling "IS MY SCHOOL, IT IS MY SCHOOL AND MY JENNY" to Lorelai and she kept taunting "no its not" in a sing song voice - i ended up snapping at Lorelai telling her not to be mean to Jaiden and she started bawling and yelling at me "Im not mean, im a nice person, im not a mean person!!" Then im trying to explain that SHE isnt mean what she said was. So i ended up dragging a screaming Jaiden, a sobbing lorelai and a stinky Lachie through the EIU pre-school gates and recieved a rather bemused look from the teachers!
Once i had disposed of child #2 i took #3 and #4 to my sisters to play with her daughter for awhile and got a change for Lachie and headed back for Jai.
On the bright side Jais teacher has figured out a way to scam some extra free pre-school hours out of our local government so that going to EIU next year doesnt take hours out of his 'regular preschool' time. YAY!
On the way to get Liam from his school this afternoon Lorelai noticed Jai's unique running style for the seemingly first time and said "why is Jaiden running like that? He looks funny!" so after i told her everyone runs differently and this is just how Jai does it she proceeded to run behind him trying to copy it all the way to the toilet block - It was very funny to watch!
After we collected Liam and were walking out the preschool gate Jai and Liam got out and the gate slammed in front of me before i could negotiate the stroller through it. Jaiden thought this was hilarious and immediatly took the oppertunity to run off as fast as possible looking backwards and heading towards a road. So im there screaming at Jai to STOP! and trying to open the top lock while little children are pushing through me trying to get to the gate first - Jai dissapears around the corner with Liam in hot persuit, and another mother came to the rescue sweeping up all the kids in my way and opening the gate for me in one action - I must have looked odd - running full pelt with this stroller screaming "JAIDEN STOP!! COME BACK HERE!!!" i ended up leaving the stroller and Lachie to their own devices and bolting after Jai finally catching him just before he ran onto the main street. UGHHHH!!!!!!!!!
I had him in a death grip the whole way home. I have been really trying to avoid it but im going to have to get one of those safety harness and lead contraptions for kids or im going to end up with a heart attack or worse - a flat child.
Well, tonight im going out for dinner with a womens group i am a part of - i actually attend only once in a blue moon but hey, im still invited to the dinner and tonight I need it!
Christmas Singing :)
Well, my husbands mother (Oma to the kids) gets the children involved in our local Austrian Clubs Christmas Singing group every year (MIL is actually German but she hangs around the Austrians for some reason! LOL)
Anyways, the concert was on Saaturday and the kiddies were SOOOO cute dressed up in their Liederhousen(sp?) i just had to show them off!
The whole night i had old Austrians speaking to me in a foreign language and smiling at the children "tre kinder? ya?" um... Yeah they are all mine - when they figured out i only speak English they would say "Oh so beautiful, i didnt know they make Liederhousen that small!" LOL
There was a lady ther who had the most beautiful voice and did a fantastic solo in "Oh Holy Night" - i love that song.
It was a really lovely night!
SINGING WITH THE CHOIR
LIAM
Jaiden
Lachie
Anyways, the concert was on Saaturday and the kiddies were SOOOO cute dressed up in their Liederhousen(sp?) i just had to show them off!
The whole night i had old Austrians speaking to me in a foreign language and smiling at the children "tre kinder? ya?" um... Yeah they are all mine - when they figured out i only speak English they would say "Oh so beautiful, i didnt know they make Liederhousen that small!" LOL
There was a lady ther who had the most beautiful voice and did a fantastic solo in "Oh Holy Night" - i love that song.
It was a really lovely night!
SINGING WITH THE CHOIR
LIAM
Jaiden
Lachie
Tuesday, December 4, 2007
Frog Cake
Here is the little man and his cake :)
He had a great party, he got a spider man costume that you can sort of see in the picture, which he hasnt taken off since!
Um.. cant think of what else to write - im having a bad memory week and cant remember what happened at all, obviously nothing bad! LOL
Went to the Neuro Technician lady for a few tests re my own odd medical problems and have discovered i am NOT having seizures (didnt think so anyway) and that i DO have Carpel Tunnel Syndrome and that she is worried i may have MS and that i have to go and pester my GP for a proper referal so they can do an MRI - Yippee...
I think i will wait until i have JJ sorted out - since the GPs around here think im nutso already, asking for a referal for an MRI and Neuro consult is just going to lable me with Munchhousens or however you spell that!
Bloody doctors... mutter mutter...
N E ways still waiting for FISH .... about 3 weeks....
I am having days of thinking i am totally wrong and days when i am absolutely positive. I have decided that 22q just doesnt fit and the Williamsy-ness of him is undeniable - My mother agrees with me and Holger is just a bundle of nerves and currently blaming himself thinking that if it is 22q then he prob has it (a fair percentage of cases are passed down) because he has 1 kidney, dislexia and strabismis. Now the poor bugger thinks his wife might have MS, the world is against him and is even more stressed...Sigh
You know the strange thing? I dont really care if i do have it. Is that weird? Ive had a good life and as long as i can do my best for the kids, im happy - besides there are drugs that slow its progression considerably so it would be ages before i would become a burden.
19 days till christmas. I WILL get the tree out today!
Tuesday, November 27, 2007
HAPPY BIRTHDAY JAIDEN!
Aw... my little man is officially a big 4 year old!!
At school yesterday they all sang the 'Happy Birthday' song and blew out 4 candles and Jai got a sticker and a special little card with his photo on it, i love that school - the teachers are so sweet :)
Today we met my mum (aka 'Nanna') for breakfast out and then went back to her house where she gave Jai his present - an absolutly awful dinosaur with scary body movements, a big roar and and light up red eyes ~shudder~ - and of course he LOVES it!
Then we went to visit a friend of mine who has a mini reptile park/petshop type set-up and he let Jaiden pat the baby crocodile and hold a snake which made him very happy. -"was streemly fun, mum,I pat the croc-a-di-el, streemly fun!"
I am so amazed at how quickly he has adapted to saying that he is 4 - of course on our little outing this morning he had to tell everyone that it was his birthday and when they asked his age he quickly put one hand on his hip, struck a rather regal pose and with a big smile announced " I FOUR!" LOL and funnily enough his favourite song in my current car CD "Number free mum, put number free!" aka 22 steps has now become "Put number four mum, number four!!" - He is just so darn cute!
We will have his party on Sunday and so i will have to start researching "how to make a frog cake"... He has been asking for a 'frog cake' since he started talking.. wish me luck!
At school yesterday they all sang the 'Happy Birthday' song and blew out 4 candles and Jai got a sticker and a special little card with his photo on it, i love that school - the teachers are so sweet :)
Today we met my mum (aka 'Nanna') for breakfast out and then went back to her house where she gave Jai his present - an absolutly awful dinosaur with scary body movements, a big roar and and light up red eyes ~shudder~ - and of course he LOVES it!
Then we went to visit a friend of mine who has a mini reptile park/petshop type set-up and he let Jaiden pat the baby crocodile and hold a snake which made him very happy. -"was streemly fun, mum,I pat the croc-a-di-el, streemly fun!"
I am so amazed at how quickly he has adapted to saying that he is 4 - of course on our little outing this morning he had to tell everyone that it was his birthday and when they asked his age he quickly put one hand on his hip, struck a rather regal pose and with a big smile announced " I FOUR!" LOL and funnily enough his favourite song in my current car CD "Number free mum, put number free!" aka 22 steps has now become "Put number four mum, number four!!" - He is just so darn cute!
We will have his party on Sunday and so i will have to start researching "how to make a frog cake"... He has been asking for a 'frog cake' since he started talking.. wish me luck!
Wednesday, November 21, 2007
Found this...
http://www.uth.tmc.edu/clinicalneuro/institute/2005/RHagerman/Bearden,%20Wang,%20et%20al.pdf
I think i may be paranoid. Ok off to bed now, i promise!
I think i may be paranoid. Ok off to bed now, i promise!
Holland mark 2
Well, i appear to have landed in New Holland and i dont like it one little bit. The tulips seem to be dying and although oh so vaguely familiar scenery it doesnt feel right. No.
Have been researching this 22q and not liking what i see... Not that i dont like the syndrome (who likes a syndrome?) I mean it doesnt sit with me. Really doesnt. No.
Well i can vaguely make out what the doctor means, but i dont 'feel' it.
LOL- how stupid of me. i have fallen into the whole 'if he has to have a syndrome Williams is the one to have' trap and now i have spent all this time familirising myself with WS and falling in love with these beautiful kids and their families and suddenly its as if someone is threatening to cancel my visa and ship me off to another country!
I reckon the 22q kids look more like Lachie than Jaiden and there is nothing wrong with Lachie.. - Hmm that didnt really come out right - its an ear shape thing...
What about the passion for music?
The out going nature? - everything i have read about 22q implies those kids are socially awkward because they are shy as opposed to because they like to hug complete strangers.
Although WS and 22q are quite similar in several ways - eg heart defects, reflux etc and total opposite in others eg Low Calcium probs with 22q as opposed to high calcium probs with WS.
And Noses... ws = short turned up, 22q = long not turned up nose - Jai has a short not turned up nose so where does that leave him?
I think what struck me so much about WS was not just reading the fact sheets so much as 'meeting' the families and hearing the behavioural similarities, watching the videos and recognising the way they run and talk, the facial expressions the WS kids tend to pull - you guys know the ones - and the fact that i can see Jaiden in every one of the kids on this blog role in various ways.
im drivelling.. sorry im tired - i really should be in bed, but ive been lying awake thinking about this new holland that i may or may not have to make a big part of my future and i just dont feel it. I dont know i guess i have reached the "acceptance" stage with WS and if its not WS i am going to have to go back to square 1 aka "denial".
Does anyone know if there are Williams Kids with cleft Uvulas or palate problems?
ugh. ITS ONLY A MONTH KATIE!! GET A GRIP GIRL!!! after all this, its only a month.
Have been researching this 22q and not liking what i see... Not that i dont like the syndrome (who likes a syndrome?) I mean it doesnt sit with me. Really doesnt. No.
Well i can vaguely make out what the doctor means, but i dont 'feel' it.
LOL- how stupid of me. i have fallen into the whole 'if he has to have a syndrome Williams is the one to have' trap and now i have spent all this time familirising myself with WS and falling in love with these beautiful kids and their families and suddenly its as if someone is threatening to cancel my visa and ship me off to another country!
I reckon the 22q kids look more like Lachie than Jaiden and there is nothing wrong with Lachie.. - Hmm that didnt really come out right - its an ear shape thing...
What about the passion for music?
The out going nature? - everything i have read about 22q implies those kids are socially awkward because they are shy as opposed to because they like to hug complete strangers.
Although WS and 22q are quite similar in several ways - eg heart defects, reflux etc and total opposite in others eg Low Calcium probs with 22q as opposed to high calcium probs with WS.
And Noses... ws = short turned up, 22q = long not turned up nose - Jai has a short not turned up nose so where does that leave him?
I think what struck me so much about WS was not just reading the fact sheets so much as 'meeting' the families and hearing the behavioural similarities, watching the videos and recognising the way they run and talk, the facial expressions the WS kids tend to pull - you guys know the ones - and the fact that i can see Jaiden in every one of the kids on this blog role in various ways.
im drivelling.. sorry im tired - i really should be in bed, but ive been lying awake thinking about this new holland that i may or may not have to make a big part of my future and i just dont feel it. I dont know i guess i have reached the "acceptance" stage with WS and if its not WS i am going to have to go back to square 1 aka "denial".
Does anyone know if there are Williams Kids with cleft Uvulas or palate problems?
ugh. ITS ONLY A MONTH KATIE!! GET A GRIP GIRL!!! after all this, its only a month.
Monday, November 19, 2007
Answers.
Wow, i dont think i have been more nervous in my life than i was this morning, i took the boys to school, chatted with Jai's teachers a bit, went and visited my sister and picked up Jai and went home to wait for Holger to get back from work ready for the dreaded appointment.
We finally found a rather tight car parking space at the hospital and walked through the entrance and down the long hallway to the main building inhaling the strong smell of disinfectant, we dodged a mass of elderly women who were bustling around a bizarre book fair type of set up smack bang in the middle of the reception area and found the lifts to level 5 Paediatrics and Genetics. The whole floor looked much like someone had bought every colour of paint available and splashed it across the walls in no particular pattern, i kind of felt like i was at the Wonka Chocolate factory without the chocolate. A young nurse directed us to the Genetics department which was a rather small series of rooms sharing with the Juvinielle Diabetes department. We took our seats in the waiting room and a bubbly women told us the Genetisist would be along shortly. Another couple appeared in the waiting room with a very young baby with a nasal tube attached to her tiny face, Jaiden of course started a conversation with them the minute they entered the room and instantly got smiles. A tall man in a suit came in and spoke to them briefly before directing us through to a larger room accross the hallway. We sat down and were joined by the Genetic counceller and a Genetics student. The tall man introduced himself as our Genetisist and he had a warm smile which made me feel really comfortable - not a feeling i usually get from specialists. He had also seen several WS patients before.
As soon as we entered the room Jaiden went into "internal mode" and his only form of communication became his huge smile. We explained why we were here and went through the same barrage of questions from the phone call with a quick correction on the birth weight, he went on to examine Jaiden extensivly and spoke to us about what he was doing as he was doing it. He studied Jaidens eyes for ages and took some clinical photos of the marked "Stallate pattern" to use for teaching purposes, we were also informed that Jai has a problem with his retina not likely to be related in any way to the genetics but we were reccommended to get a refferal to an opthomologist ASAP as this would need to be corrected. Hmmm..
Another new discovery was that Jai has a soft pallate and promenent Cleft of his Uvula (little dangly bit in the throat) which has somehow been missed by a zillion doctors and an ENT and that under no curcumstances should Jai EVER have his Adnoids out as this would collapse his pallate entirely and cause all sorts of problems. Well...
After all the examining and talking the conclusion was that he doesnt really feel WS fits properly due to gross motor skills being pretty good, his nose wasnt really as turned up as he would expect to see from WS and he didnt feel he was social enough (although something about doctors offices makes Jai very quiet and very complient, not his usual self - i reckon he was scared!), however the geneticist did feel that due to all the other symptoms, behaviour and especially the Stallate Iris pattern it certainly needed to be tested for if only to be ruled out. His hunch is that it is actually a 22q Deletion Valo-Cardio-Facio-Syndrome, which i have to go and re-study as in my internet self diagnosis search i had ruled that out for some reason. So in the end he tested for WS, 22q, Fragile X and a general Karotype + urine analysis - we should have the results back in 1 month and he said that if these tests comeback negative then we should come back and do some furthur testing as he feels that Jai's problem is definatly of a Genetic nature.
I think today was the first day Holger really grasped that Jai is not and probably never will be 'Typical'- i could see that realisation on his face as Jai had the bloods drawn, I feel suprisingly emotionless - im relieved that this day has been and that i didnt get persecuted for my internet research in any way and i also feel comfortable with the Genetisist and felt i could be open and ask questions.
So i guess, now we wait.
We finally found a rather tight car parking space at the hospital and walked through the entrance and down the long hallway to the main building inhaling the strong smell of disinfectant, we dodged a mass of elderly women who were bustling around a bizarre book fair type of set up smack bang in the middle of the reception area and found the lifts to level 5 Paediatrics and Genetics. The whole floor looked much like someone had bought every colour of paint available and splashed it across the walls in no particular pattern, i kind of felt like i was at the Wonka Chocolate factory without the chocolate. A young nurse directed us to the Genetics department which was a rather small series of rooms sharing with the Juvinielle Diabetes department. We took our seats in the waiting room and a bubbly women told us the Genetisist would be along shortly. Another couple appeared in the waiting room with a very young baby with a nasal tube attached to her tiny face, Jaiden of course started a conversation with them the minute they entered the room and instantly got smiles. A tall man in a suit came in and spoke to them briefly before directing us through to a larger room accross the hallway. We sat down and were joined by the Genetic counceller and a Genetics student. The tall man introduced himself as our Genetisist and he had a warm smile which made me feel really comfortable - not a feeling i usually get from specialists. He had also seen several WS patients before.
As soon as we entered the room Jaiden went into "internal mode" and his only form of communication became his huge smile. We explained why we were here and went through the same barrage of questions from the phone call with a quick correction on the birth weight, he went on to examine Jaiden extensivly and spoke to us about what he was doing as he was doing it. He studied Jaidens eyes for ages and took some clinical photos of the marked "Stallate pattern" to use for teaching purposes, we were also informed that Jai has a problem with his retina not likely to be related in any way to the genetics but we were reccommended to get a refferal to an opthomologist ASAP as this would need to be corrected. Hmmm..
Another new discovery was that Jai has a soft pallate and promenent Cleft of his Uvula (little dangly bit in the throat) which has somehow been missed by a zillion doctors and an ENT and that under no curcumstances should Jai EVER have his Adnoids out as this would collapse his pallate entirely and cause all sorts of problems. Well...
After all the examining and talking the conclusion was that he doesnt really feel WS fits properly due to gross motor skills being pretty good, his nose wasnt really as turned up as he would expect to see from WS and he didnt feel he was social enough (although something about doctors offices makes Jai very quiet and very complient, not his usual self - i reckon he was scared!), however the geneticist did feel that due to all the other symptoms, behaviour and especially the Stallate Iris pattern it certainly needed to be tested for if only to be ruled out. His hunch is that it is actually a 22q Deletion Valo-Cardio-Facio-Syndrome, which i have to go and re-study as in my internet self diagnosis search i had ruled that out for some reason. So in the end he tested for WS, 22q, Fragile X and a general Karotype + urine analysis - we should have the results back in 1 month and he said that if these tests comeback negative then we should come back and do some furthur testing as he feels that Jai's problem is definatly of a Genetic nature.
I think today was the first day Holger really grasped that Jai is not and probably never will be 'Typical'- i could see that realisation on his face as Jai had the bloods drawn, I feel suprisingly emotionless - im relieved that this day has been and that i didnt get persecuted for my internet research in any way and i also feel comfortable with the Genetisist and felt i could be open and ask questions.
So i guess, now we wait.
Sunday, November 18, 2007
Tomorrow
Well after all this time its upon me. Tomorrow is D day.
I had a phone call from the Genetisits nursy type lady the other day who hit me with a barrage of questions over the phone while i tried to fend off 4 very noisy and persitent under 6yr olds. She questioned me on all the baby hood stuff and i was surprised at how many questions i had trouble remembering the answer to!
When did Jaiden smile/roll/grasp and object/wave/clap/sit/stand/walk/toilet train etc!
How big was he when he was born? - Now that one was easy 2.8kg!
Now i go and get his baby book record thingy to take with me tomorrow and it claims he was a whopping 3.08kg! WHAT?? Then i look into Liams baby record and HE was the 2.8kg bub. Well. I cant even remember which child was what size, it has me questioning everything else i told the Geneticist nurse type lady over the phone! And according to the baby book Jai smiled at 6 weeks? IM SURE he was later (more like 3months) because it was one of my first concerns - maybe he was gassy and i was doing the new mother hope its a smile thing and assured myself and the lady who checked him that he WAS smiling... I also hadnt had anything in the record filled in except vaccines since he was 8 weeks old...
Aughh! I know i went to the GP a few times with the reflux concerning me but just got told he would out grow it and since he was gaining weight all was good.
I pretty much managed it on my own - he couldnt breast feed very well and was skinny as a rabbit so i put him on formula at about 3weeks and litrally dripped the bottle into his mouth cause he had a poor suck with some attempted breast milk in between till he got the hang of the bottle which was in reality only a few weeks but felt like eternity at the time, we used these great colic drops in it and despite throwing up constantly for the best part of his first year (even in his sleep)
That formula worked wonders and he thrived weight wise - always short and kind of slow to grow a few clothes sizes behind his age but still growing!
Basically until at 3 he wasnt talking the GP never took any of my concerns seriously and as she deemed Liam very bright just kept telling me not to compare the boys! Kids normally wave before 15months dont they? I doubted myself - maybe i was just over worrying.
I actually felt some degree of Joy when after a Paed referal because of language delay and the subsiquent "Griffiths Assessment Scales" it was revealed Jaiden was in the "Low range of abilities" . Somebody thought i wasnt mad and actually listened to my concerns + reffered Jai to the EIU. I LOVED that Paed. I was really dissapointed that he left the state and i didnt get to see him again.
I wish i had changed GP back when there were acid burns all down Jaidens chin and neck from his toxic dribble, i hope the poor kid didnt suffer from that too much - he was just so damn complient, i guess he has always had a high pain threshold.
This is turning into a bit of a ramble i always ramble on more when im nervous, i guess i am feeling guilty for not doing more earlier and my own stubborness might be to blame for nothing being done earlier - if only i had spoken to the baby nurses more instead of just going to the GP ( i had a problem with one of the baby nurses at the clinic and didnt go back again). Live and learn i suppose. Tomorrow is a new day. The first day of the rest of our lives. Then we wait for the FISH and possibly any other tests they may want to do.
Just one last thing....
Thank you to all of my fellow Bloggers whome with out i dont know how i would have made it to this day. And i would also like to say how excited it makes me to see how much the blogging list has grown now! We have a great little community and i feel honoured to be a part of it :)
I had a phone call from the Genetisits nursy type lady the other day who hit me with a barrage of questions over the phone while i tried to fend off 4 very noisy and persitent under 6yr olds. She questioned me on all the baby hood stuff and i was surprised at how many questions i had trouble remembering the answer to!
When did Jaiden smile/roll/grasp and object/wave/clap/sit/stand/walk/toilet train etc!
How big was he when he was born? - Now that one was easy 2.8kg!
Now i go and get his baby book record thingy to take with me tomorrow and it claims he was a whopping 3.08kg! WHAT?? Then i look into Liams baby record and HE was the 2.8kg bub. Well. I cant even remember which child was what size, it has me questioning everything else i told the Geneticist nurse type lady over the phone! And according to the baby book Jai smiled at 6 weeks? IM SURE he was later (more like 3months) because it was one of my first concerns - maybe he was gassy and i was doing the new mother hope its a smile thing and assured myself and the lady who checked him that he WAS smiling... I also hadnt had anything in the record filled in except vaccines since he was 8 weeks old...
Aughh! I know i went to the GP a few times with the reflux concerning me but just got told he would out grow it and since he was gaining weight all was good.
I pretty much managed it on my own - he couldnt breast feed very well and was skinny as a rabbit so i put him on formula at about 3weeks and litrally dripped the bottle into his mouth cause he had a poor suck with some attempted breast milk in between till he got the hang of the bottle which was in reality only a few weeks but felt like eternity at the time, we used these great colic drops in it and despite throwing up constantly for the best part of his first year (even in his sleep)
That formula worked wonders and he thrived weight wise - always short and kind of slow to grow a few clothes sizes behind his age but still growing!
Basically until at 3 he wasnt talking the GP never took any of my concerns seriously and as she deemed Liam very bright just kept telling me not to compare the boys! Kids normally wave before 15months dont they? I doubted myself - maybe i was just over worrying.
I actually felt some degree of Joy when after a Paed referal because of language delay and the subsiquent "Griffiths Assessment Scales" it was revealed Jaiden was in the "Low range of abilities" . Somebody thought i wasnt mad and actually listened to my concerns + reffered Jai to the EIU. I LOVED that Paed. I was really dissapointed that he left the state and i didnt get to see him again.
I wish i had changed GP back when there were acid burns all down Jaidens chin and neck from his toxic dribble, i hope the poor kid didnt suffer from that too much - he was just so damn complient, i guess he has always had a high pain threshold.
This is turning into a bit of a ramble i always ramble on more when im nervous, i guess i am feeling guilty for not doing more earlier and my own stubborness might be to blame for nothing being done earlier - if only i had spoken to the baby nurses more instead of just going to the GP ( i had a problem with one of the baby nurses at the clinic and didnt go back again). Live and learn i suppose. Tomorrow is a new day. The first day of the rest of our lives. Then we wait for the FISH and possibly any other tests they may want to do.
Just one last thing....
Thank you to all of my fellow Bloggers whome with out i dont know how i would have made it to this day. And i would also like to say how excited it makes me to see how much the blogging list has grown now! We have a great little community and i feel honoured to be a part of it :)
Tuesday, November 6, 2007
Waiting...
Wow. I just got one of those punch to the stomach moments.
I was reading Penny's blog and came accross the link to Tyler's site. I hadnt seen this site before and so decided to have a squiz.
I was enjoying reading the journal entries when i came across a picture of Tyler in a spongebob costume.
BANG!
There it was. Change the hair and you had Jaiden. Then all of a sudden Jai waltzes up to the computer and starts giggling " Its ME, Its ME on the puter mum!!! My sponge bob!! Where's my sponge bob????" I then told him it was Tyler -not Jaiden on the screen and he wouldnt have it, lots of "NO MUMMY IT ME ON THERE!!" followed by a meltdown because he wanted "his" sponge bob costume and i couldnt give it to him.
Woah.
I see William's faces every day. EVERY day i see the similarities. Sometimes i come accross a photo that makes me go OH MY GOD! There is no denying it.
Hmm... but when i stop for a while i start to doubt my little self diagnosis and picture myself walking into the geneticists office only to be laughed at and sent away with a "how abserd!" comment and a wave of the hand. I think i am more nervous of being told its NOT WS than of being told it IS. Then at least the unknown is over.
12 days to the Genetics appointment, its been so long and its so close now i cant stand this waiting anymore. 12 days then of course there is the wait for the FISH results. I could scream.
Im sorry i keep posting the same topic over and over, i guess its because it plays on my mind over and over- im at the point where it shouldnt even matter, but it still does. I wonder if there are any WS families hiding in Canberra? That little boy that came into my work once certainly looked the part...
12 days.
I was reading Penny's blog and came accross the link to Tyler's site. I hadnt seen this site before and so decided to have a squiz.
I was enjoying reading the journal entries when i came across a picture of Tyler in a spongebob costume.
BANG!
There it was. Change the hair and you had Jaiden. Then all of a sudden Jai waltzes up to the computer and starts giggling " Its ME, Its ME on the puter mum!!! My sponge bob!! Where's my sponge bob????" I then told him it was Tyler -not Jaiden on the screen and he wouldnt have it, lots of "NO MUMMY IT ME ON THERE!!" followed by a meltdown because he wanted "his" sponge bob costume and i couldnt give it to him.
Woah.
I see William's faces every day. EVERY day i see the similarities. Sometimes i come accross a photo that makes me go OH MY GOD! There is no denying it.
Hmm... but when i stop for a while i start to doubt my little self diagnosis and picture myself walking into the geneticists office only to be laughed at and sent away with a "how abserd!" comment and a wave of the hand. I think i am more nervous of being told its NOT WS than of being told it IS. Then at least the unknown is over.
12 days to the Genetics appointment, its been so long and its so close now i cant stand this waiting anymore. 12 days then of course there is the wait for the FISH results. I could scream.
Im sorry i keep posting the same topic over and over, i guess its because it plays on my mind over and over- im at the point where it shouldnt even matter, but it still does. I wonder if there are any WS families hiding in Canberra? That little boy that came into my work once certainly looked the part...
12 days.
Sunday, November 4, 2007
Validation
I awoke at exactly 5 minutes before 9am this morning with a sudden start when i realised that i had exactly 5 minutes to wake up, dress, and feed three children, aswell as shower myself and find something to wear that would meake me look like a remotely presentable parental figure.
The reason behind the unusually lengthy sleep in on a school day is due to the fact that we didnt get home until after midnight last night after a rather unexpected invitation to visit some friends in a nearby country town for dinner who also happened to have a mutual friend from Sydney there for the night... Of course we had to go and the evening was lovely but dragged on a little bit too long for a tired mummy and three small children.
At 11pm i finally detatched Liam from an X- Box and peeled sleeping Lachie and Jaiden from the couch and convinced them to sit the car while i dragged my rather intoxicated husband from his mate and an intelligent conversation that appeared to be solving all of the worlds problems at once. We said our goodbyes and headed off on the long drive home taking care to avoid plowing into a mob of Kangaroos that were sitting in the belting rain on the edge of the windy road thretening to jump out in front of us at any moment.
So although i awoke this morning in a mad panic, i did manage to get the children out of the house and to school, packed lunch and all by 9:30am - which i must say i think was a pretty good effort all things considering!
After we waved goodbye to Jaiden, Lachie and i headed to the supermarket to purchase some Nappies and food essentials only to go to pay and realise my darling husband still had the credit card in his wallet! After many embarressed apologies to the cashier and the people in line behind me we left the store quickly empty handed and it was already time to collect JJ.
I arrived at the EIU a little early and sat down to watch the children do their goodbye song and then stayed back while Jaiden and Aiden played together nicely outside. We were having a look at some picture board style books for Aiden that J's teacher was making and the three of us got chatting It was lovely to speak with Aidens grandma properly for the first time and i have discovered she is a breast cancer surviver down from Queensland. We spoke openly about the children and their quirks and we both realised we had alot in commen. We also spoke about things like taking the boys to the shops and how hard it can be sometimes when people give you those 'looks' and comments, we spoke of how she had survived breast cancer and of our hopes for the kids future. Jaiden and Aiden played brilliantly together the entire time - which we all agreed was the longest either of them had played nicely with anyone with no interuptions - EVER!
We didnt end up leaving for a further hour and a half and i left feeling very validated about my feelings and although i know im not alone, it was kind of nice to have somebody "In real life" and not on the internet to share with.
The reason behind the unusually lengthy sleep in on a school day is due to the fact that we didnt get home until after midnight last night after a rather unexpected invitation to visit some friends in a nearby country town for dinner who also happened to have a mutual friend from Sydney there for the night... Of course we had to go and the evening was lovely but dragged on a little bit too long for a tired mummy and three small children.
At 11pm i finally detatched Liam from an X- Box and peeled sleeping Lachie and Jaiden from the couch and convinced them to sit the car while i dragged my rather intoxicated husband from his mate and an intelligent conversation that appeared to be solving all of the worlds problems at once. We said our goodbyes and headed off on the long drive home taking care to avoid plowing into a mob of Kangaroos that were sitting in the belting rain on the edge of the windy road thretening to jump out in front of us at any moment.
So although i awoke this morning in a mad panic, i did manage to get the children out of the house and to school, packed lunch and all by 9:30am - which i must say i think was a pretty good effort all things considering!
After we waved goodbye to Jaiden, Lachie and i headed to the supermarket to purchase some Nappies and food essentials only to go to pay and realise my darling husband still had the credit card in his wallet! After many embarressed apologies to the cashier and the people in line behind me we left the store quickly empty handed and it was already time to collect JJ.
I arrived at the EIU a little early and sat down to watch the children do their goodbye song and then stayed back while Jaiden and Aiden played together nicely outside. We were having a look at some picture board style books for Aiden that J's teacher was making and the three of us got chatting It was lovely to speak with Aidens grandma properly for the first time and i have discovered she is a breast cancer surviver down from Queensland. We spoke openly about the children and their quirks and we both realised we had alot in commen. We also spoke about things like taking the boys to the shops and how hard it can be sometimes when people give you those 'looks' and comments, we spoke of how she had survived breast cancer and of our hopes for the kids future. Jaiden and Aiden played brilliantly together the entire time - which we all agreed was the longest either of them had played nicely with anyone with no interuptions - EVER!
We didnt end up leaving for a further hour and a half and i left feeling very validated about my feelings and although i know im not alone, it was kind of nice to have somebody "In real life" and not on the internet to share with.
Thursday, November 1, 2007
HAPPY HALLOWEEN
Well, since Australians are boring and dont get into the pumpkin spirit, i thought i would join the bloggers costume parade with a couple of pics of Liams dress up birthday party:
This one is Liam (middle)and some friends opening pass the parcel..
This is JJ in his peter pan costume:
This one is Liam (middle)and some friends opening pass the parcel..
This is JJ in his peter pan costume:
Monday, October 29, 2007
Acceptance
Have you ever seen somebody's heart break?
There is this empty and distant look where the gleam in their eyes used to be and a false smile hiding the lump in their throat threatening to explode into tears at any moment.
I saw it in Liam when we arrived at pre-school the morning i forgot about 'dress up day' and he was the only one not dressed up. Today i saw it again, this time in the Grandmother of a boy who has just started school with Jai.
Aiden, as he happens to be named, has just been diagnosed with Autism. He isnt severe, not that that fact lessons the impact any.. Today when i arrived to pick up Jai, Aiden came bursting through the door into the classroom from the outside area with tears streaming down his little face flapping his hands violantly, with a very angry look on his face he proceeded to the little washroom where he turned on all the taps and splashed his hands down in the trough forcefully for a few seconds and then as the water's obvious calming effect came into play and he just let his hands sit in the trough under the flowing water the anger fading slowly from his expression.
Aidens grandmother followed inside behind him but stopped momentarily at the door to the little bathroom as if to say a prayer she stepped back and looked at the wall then back at me and smiled that false smile you give when you want to pretend you are strong when all you want to do is dissapear into the ground her heart was breaking for her grandson. Part of me wanted to get up and give her a hug and part of me wanted to cry and run away- Aidens little outburst was in no way unique at the EIU and will be long forgotton by the following morning, the reason it stays with me and that the look on his grandmothers face will probably remain etched in my mind forever is that i understand that "defining moment" (to quote Dr Phil) when your whole world collapses and you realise that everything from this day forth will be different. No more planning for college and dreaming of (great)grandchildren. Only right now is a certainty.
These moments that hit me every now and then when Jaiden does something little but undeniably "abnormal". That king hit to the head that is closely followed by the lioness protective instinct of 'keep the hell away from my child' and then that hollow feeling that continues on till the next time. i guess its stages of grief really Denial, Anger, Acceptance...
As my son clings to me crying frantically over his bleeding knee, which is only bleeding because he compulsively picks at it and i know he is only crying because of his new found anxiety over blood. It pains me a great deal that he doesnt realise if he stops picking the blood will stop and that even if he did realise this he probably couldnt stop himself picking anyway.
Numb. Acceptance. Must pick up Liam from school and life goes on.
There is this empty and distant look where the gleam in their eyes used to be and a false smile hiding the lump in their throat threatening to explode into tears at any moment.
I saw it in Liam when we arrived at pre-school the morning i forgot about 'dress up day' and he was the only one not dressed up. Today i saw it again, this time in the Grandmother of a boy who has just started school with Jai.
Aiden, as he happens to be named, has just been diagnosed with Autism. He isnt severe, not that that fact lessons the impact any.. Today when i arrived to pick up Jai, Aiden came bursting through the door into the classroom from the outside area with tears streaming down his little face flapping his hands violantly, with a very angry look on his face he proceeded to the little washroom where he turned on all the taps and splashed his hands down in the trough forcefully for a few seconds and then as the water's obvious calming effect came into play and he just let his hands sit in the trough under the flowing water the anger fading slowly from his expression.
Aidens grandmother followed inside behind him but stopped momentarily at the door to the little bathroom as if to say a prayer she stepped back and looked at the wall then back at me and smiled that false smile you give when you want to pretend you are strong when all you want to do is dissapear into the ground her heart was breaking for her grandson. Part of me wanted to get up and give her a hug and part of me wanted to cry and run away- Aidens little outburst was in no way unique at the EIU and will be long forgotton by the following morning, the reason it stays with me and that the look on his grandmothers face will probably remain etched in my mind forever is that i understand that "defining moment" (to quote Dr Phil) when your whole world collapses and you realise that everything from this day forth will be different. No more planning for college and dreaming of (great)grandchildren. Only right now is a certainty.
These moments that hit me every now and then when Jaiden does something little but undeniably "abnormal". That king hit to the head that is closely followed by the lioness protective instinct of 'keep the hell away from my child' and then that hollow feeling that continues on till the next time. i guess its stages of grief really Denial, Anger, Acceptance...
As my son clings to me crying frantically over his bleeding knee, which is only bleeding because he compulsively picks at it and i know he is only crying because of his new found anxiety over blood. It pains me a great deal that he doesnt realise if he stops picking the blood will stop and that even if he did realise this he probably couldnt stop himself picking anyway.
Numb. Acceptance. Must pick up Liam from school and life goes on.
Sunday, October 21, 2007
Wahoooo!!!
A big achievement this week:
Jaiden has worked out how to button up his pyjama top!!!
He has finally got enough strength in those little fingers to get the button through the hole! He is so proud of himself (as am I) and wont let anyone within two metres of him while he is doing it for fear they are trying to 'help' him!
Jaiden has worked out how to button up his pyjama top!!!
He has finally got enough strength in those little fingers to get the button through the hole! He is so proud of himself (as am I) and wont let anyone within two metres of him while he is doing it for fear they are trying to 'help' him!
Thursday, October 18, 2007
sing me a song your the piano man...
I finally have a piano in my life!
I have wanted a piano since i was little and never had the oppertunity.
I spoke to an old friend from my youth a few months ago and spoke to her about many things including WS and Jaiden.
She rang me up out of the blue the other day and asked if i wanted a Piano. She said she remembered how i always wanted one and that i also wanted the kids to have music in their lives. So she has moved to Melbourne and left me with not one but two Pianos. One little one to play and a bonus almost 100yr old Pianola which Holger will try to restore to its original glory.
Jaiden hates it and screeches "too loud" with his hands over his ears, that is unless HE is playing it then of course the noise doesnt seem to bother him in the slightest and the rest of us need to put our hands over OUR ears!
YAY!!! im so excited :)Now i just have to learn how to play the piano.....
I have wanted a piano since i was little and never had the oppertunity.
I spoke to an old friend from my youth a few months ago and spoke to her about many things including WS and Jaiden.
She rang me up out of the blue the other day and asked if i wanted a Piano. She said she remembered how i always wanted one and that i also wanted the kids to have music in their lives. So she has moved to Melbourne and left me with not one but two Pianos. One little one to play and a bonus almost 100yr old Pianola which Holger will try to restore to its original glory.
Jaiden hates it and screeches "too loud" with his hands over his ears, that is unless HE is playing it then of course the noise doesnt seem to bother him in the slightest and the rest of us need to put our hands over OUR ears!
YAY!!! im so excited :)Now i just have to learn how to play the piano.....
Wednesday, October 17, 2007
21 things i love about Jaiden...
Some of the others are doing '21 things' posts as part of 31 for 21, so heres mine,
21 Things I love about Jaiden:
21. His big smile that lights up a room.
20. The way he giggles hysterically when you tickle him.
19. How peaceful he looks asleep.
18. How he defends his brothers from all the scary stuff he hates
(eg. "DONT WASH MY BRUDDA'S HAIR!! HE DONT LIKE TO!!" hands on hips, angry tone!)
17. The simplest things in life like watching butterflys bring him pure joy.
16. the way he sings ABC' "a b c d e f g, gggg elephant o p.. next time sing with me!"
15. The way he shows excitement with every part of his body.
14. How he says, "I love you mum" with such honest eyes.
13. That no matter what he is doing, he is singing while he does it.
12. How much he loves his school, his Jenny and his rocket boots!
11. The way he says, "im sorry mum..." in a regretful tone big pout on his lips, then looks up at you and gives the biggest grin ever, when he has done something naughty, makes me just want to hug him!
10. The way he remembers people he only met a few times and hasnt seen in years.
9. If he suddenly dissapears he can often be found in the bathroom cleaning his teeth again, "Make my teeth shine, mum!"
8. The way he trys to lie and will walk passed you, eyes wide and say, "i didnt take the chocolate, mum." and i say was it yummy? and he says "YES!!" with that cute grin.
7. How he sneaks into my room to play my guitar.
6. The way he effortlessly can make a good sound out of a Digeridoo (not easy!)
5. How he calls the moon 'Australia' and there is no changing his mind!
4. The way he can spot an aeroplane high in the sky long before i can see or hear it.
3. The cute way he sits on his head upside down on the couch while he watches TV.
2. The way he yells "To IFTY and B'yond!" as he jumps off various things around the yard.
1. The way he gives you the biggest bear hug in the world when he gets up in the morning.
21 Things I love about Jaiden:
21. His big smile that lights up a room.
20. The way he giggles hysterically when you tickle him.
19. How peaceful he looks asleep.
18. How he defends his brothers from all the scary stuff he hates
(eg. "DONT WASH MY BRUDDA'S HAIR!! HE DONT LIKE TO!!" hands on hips, angry tone!)
17. The simplest things in life like watching butterflys bring him pure joy.
16. the way he sings ABC' "a b c d e f g, gggg elephant o p.. next time sing with me!"
15. The way he shows excitement with every part of his body.
14. How he says, "I love you mum" with such honest eyes.
13. That no matter what he is doing, he is singing while he does it.
12. How much he loves his school, his Jenny and his rocket boots!
11. The way he says, "im sorry mum..." in a regretful tone big pout on his lips, then looks up at you and gives the biggest grin ever, when he has done something naughty, makes me just want to hug him!
10. The way he remembers people he only met a few times and hasnt seen in years.
9. If he suddenly dissapears he can often be found in the bathroom cleaning his teeth again, "Make my teeth shine, mum!"
8. The way he trys to lie and will walk passed you, eyes wide and say, "i didnt take the chocolate, mum." and i say was it yummy? and he says "YES!!" with that cute grin.
7. How he sneaks into my room to play my guitar.
6. The way he effortlessly can make a good sound out of a Digeridoo (not easy!)
5. How he calls the moon 'Australia' and there is no changing his mind!
4. The way he can spot an aeroplane high in the sky long before i can see or hear it.
3. The cute way he sits on his head upside down on the couch while he watches TV.
2. The way he yells "To IFTY and B'yond!" as he jumps off various things around the yard.
1. The way he gives you the biggest bear hug in the world when he gets up in the morning.
Tuesday, October 16, 2007
as is life...
Been a bit crook recently and having trouble concentrating on most things. I think work is getting a bit fed up with me as i seem to be having trouble remembering what a gold fish is.
I finally went to a NEW doctor about these annoying headachy feinting spells and numb fingers and instead of the usual blood work he sent me off for a CT scan and i have to see a Neurologist for a nerve conduction and EEG. The CT scan was clear (thank goodness) and now i can prove to people i do have a brain as i have a picture of it. I was given the miss information that CT scans dont hurt. PAH! your head goes warm and it feels like somebody puts a bolt of lightening into your head several times really quickly, then stops equally as quickly. Ow!!
On the bright side the new doctor is really nice and i had a quick yarn to him re Jai and he said to bring Jai to see him after the Geneticist appointment so we can work out whats next WS or not.
I read on the list serve there was a Law & Order SVU episode involving a WS girl last night, Its a shame Australian TV airs at a different time so i have no idea when that episode will show here as i would like to see it!
Jaiden has been an angel all week which is nice, the kids are back at school for term 4 and Jai was very excited to see his Jenny again. LOL its cute how much he asks "we go to Jenny, mum? we go see Jenny now??"
Lachie is cutting his last two teeth and is extremely cranky about it and Liam is generally whingy at the moment, i think being back at school has tired him out a bit.
I just want to sleep for a few days and i should be fine :)
I finally went to a NEW doctor about these annoying headachy feinting spells and numb fingers and instead of the usual blood work he sent me off for a CT scan and i have to see a Neurologist for a nerve conduction and EEG. The CT scan was clear (thank goodness) and now i can prove to people i do have a brain as i have a picture of it. I was given the miss information that CT scans dont hurt. PAH! your head goes warm and it feels like somebody puts a bolt of lightening into your head several times really quickly, then stops equally as quickly. Ow!!
On the bright side the new doctor is really nice and i had a quick yarn to him re Jai and he said to bring Jai to see him after the Geneticist appointment so we can work out whats next WS or not.
I read on the list serve there was a Law & Order SVU episode involving a WS girl last night, Its a shame Australian TV airs at a different time so i have no idea when that episode will show here as i would like to see it!
Jaiden has been an angel all week which is nice, the kids are back at school for term 4 and Jai was very excited to see his Jenny again. LOL its cute how much he asks "we go to Jenny, mum? we go see Jenny now??"
Lachie is cutting his last two teeth and is extremely cranky about it and Liam is generally whingy at the moment, i think being back at school has tired him out a bit.
I just want to sleep for a few days and i should be fine :)
Tuesday, October 9, 2007
Birthdays and aging
Wow, it seems to be birthday season - all the little ones are growing up so quickly.
We have been to so many Birthday parties recently that cake is becoming a regular part of the kids diet.
Its Jaidens birthday at the end of next month, the big 4. He has been waiting for this day since his last birthday and asks every day without fail if its his birthday yet and will he get his frog cake?
Jaiden has loved frogs since i can remember - i used to keep 2 green tree frogs in a terrarium and Jaiden would just stand and stare at the tank for ages hoping to catch a glimpse of the frogs, he often would find 'Kermit' and 'Freddo' in the vast tropical overgrowth somewhere under a leaf, he has a great eye for small details - he spots planes in the sky so far up i can only just get a glimpse of the reflection the sun makes off their metal body.
I wonder if we will have his diagnosis by his birthday, the appointment is on the 19th and his birthday is on the 28th - i have been told by other Aussie WS parents that the FISH results take up to a month to come in after the blood has been taken, Im so sick of waiting now, i just want time to hurry up so i can confirm or rule-out. At least we should definatly know by Christmas.
I feel really old these days, im always tired and my mind and body just dont seem to be keeping up with the speed of my life. Im only young in years, but in someways i feel so ancient, its like ive crammed an extra decade in there somewhere- Married, Working, House, 3 kids and a dog. Im only 22. Somedays i think i just want to run away home to my mother and cry on her shoulder, yet at the same time i have no regrets. At least i will have more time to take a cruise or sip wine in my retirement, or maybe i wont, but i dont really like to think about the possibility that one of my children may never be able to live away from home.
We have been to so many Birthday parties recently that cake is becoming a regular part of the kids diet.
Its Jaidens birthday at the end of next month, the big 4. He has been waiting for this day since his last birthday and asks every day without fail if its his birthday yet and will he get his frog cake?
Jaiden has loved frogs since i can remember - i used to keep 2 green tree frogs in a terrarium and Jaiden would just stand and stare at the tank for ages hoping to catch a glimpse of the frogs, he often would find 'Kermit' and 'Freddo' in the vast tropical overgrowth somewhere under a leaf, he has a great eye for small details - he spots planes in the sky so far up i can only just get a glimpse of the reflection the sun makes off their metal body.
I wonder if we will have his diagnosis by his birthday, the appointment is on the 19th and his birthday is on the 28th - i have been told by other Aussie WS parents that the FISH results take up to a month to come in after the blood has been taken, Im so sick of waiting now, i just want time to hurry up so i can confirm or rule-out. At least we should definatly know by Christmas.
I feel really old these days, im always tired and my mind and body just dont seem to be keeping up with the speed of my life. Im only young in years, but in someways i feel so ancient, its like ive crammed an extra decade in there somewhere- Married, Working, House, 3 kids and a dog. Im only 22. Somedays i think i just want to run away home to my mother and cry on her shoulder, yet at the same time i have no regrets. At least i will have more time to take a cruise or sip wine in my retirement, or maybe i wont, but i dont really like to think about the possibility that one of my children may never be able to live away from home.
31 for 21
Michelle (Big Blueberry Eyes) Blogged a fantastic post about some of the physical characteristics of DS, go have a look! http://mdbeau.blogspot.com/
Monday, October 8, 2007
Best Laid Plans..
Im failing miserably at this 31 for 21 thing,
I have blogged only twice and its already the 9th …
I blame my writers block on my slowly deteriorating brain which i fear will totally cease to function at some point in the near future.
I was supposed to work Saturday but by 10am i had dignified myself by passing out on a customer in the midst of a very interesting discussion about a Labradors flea problem, so i spent the rest of the day in the staff room asleep on a rather large dog bed - i must say the bed was very comfortable and i think that i will be able to sell alot more of them now that i have had this first hand experience.
Im not sure what triggered this particular incident but as the sensation in my fingers and toes is barely functioning right now id say i will feel a bit perculier for another few weeks then i should be back to my sparkling self, fine motor skills and all, until the next time. Sigh, sometimes im more complicated than my son.
Speaking of, Jai has had a really good week, he is just so cute sometimes! He had a minor freak out over my mothers washing machine today but instead of screaming like a banshee he put his hands over his ears, pout on his little face and said "I dont like 'EEEEE' mummy, Nanna's washing-sheen is scary" It always amuses me the way he imitates the sounds that bother him - especially fireworks, thats a really cute impersonation, one which i would probably enjoy a whole lot more if the poor kid didnt look so frightened when he did it!
Lachie was driving me nuts today, he is into EVERYTHING and if he cant reach it he finds a chair and pushes it around with him to reach what he wants. After a brief discussion with Holger about even MORE child safety locks i am starting to think i should just lock him in his room in a straight jacket to save money.
The weather is warmer and im starting to come out of hibernation, my resolve to get fit yesterday started with a coffee and ended with an entire packet of Tim Tams. I have two pairs of pants and one T shirt which fit me comfortably and dont make me look like im doing Kath & Kim impersonations. I DONT NEED CHOCOLATE!!!!!
I have blogged only twice and its already the 9th …
I blame my writers block on my slowly deteriorating brain which i fear will totally cease to function at some point in the near future.
I was supposed to work Saturday but by 10am i had dignified myself by passing out on a customer in the midst of a very interesting discussion about a Labradors flea problem, so i spent the rest of the day in the staff room asleep on a rather large dog bed - i must say the bed was very comfortable and i think that i will be able to sell alot more of them now that i have had this first hand experience.
Im not sure what triggered this particular incident but as the sensation in my fingers and toes is barely functioning right now id say i will feel a bit perculier for another few weeks then i should be back to my sparkling self, fine motor skills and all, until the next time. Sigh, sometimes im more complicated than my son.
Speaking of, Jai has had a really good week, he is just so cute sometimes! He had a minor freak out over my mothers washing machine today but instead of screaming like a banshee he put his hands over his ears, pout on his little face and said "I dont like 'EEEEE' mummy, Nanna's washing-sheen is scary" It always amuses me the way he imitates the sounds that bother him - especially fireworks, thats a really cute impersonation, one which i would probably enjoy a whole lot more if the poor kid didnt look so frightened when he did it!
Lachie was driving me nuts today, he is into EVERYTHING and if he cant reach it he finds a chair and pushes it around with him to reach what he wants. After a brief discussion with Holger about even MORE child safety locks i am starting to think i should just lock him in his room in a straight jacket to save money.
The weather is warmer and im starting to come out of hibernation, my resolve to get fit yesterday started with a coffee and ended with an entire packet of Tim Tams. I have two pairs of pants and one T shirt which fit me comfortably and dont make me look like im doing Kath & Kim impersonations. I DONT NEED CHOCOLATE!!!!!
Thursday, October 4, 2007
If Jaiden were a girl...
He would look like this!
LOL, i probably shouldnt steal peoples photos from the internet but i was perusing a German WS site ( finding info for MIL to understand better)and came across this little girl who reminds me of Jaiden!
LOL, i probably shouldnt steal peoples photos from the internet but i was perusing a German WS site ( finding info for MIL to understand better)and came across this little girl who reminds me of Jaiden!
Wednesday, October 3, 2007
Just say hello
I have been thinking of what to write about Downs Syndrome for '31 for 21' and i must admit there is very little i know about the Syndrome, I am learning little bits from Michelle and have met more and more kids with DS lately - I think having Jaiden has opened up my eyes to people with disabilities more in general, i remeber a time when i would walk stiffly passed a smiling disabled child who would say 'hello, how are you?' to me feeling unsure what to say. I am very ashamed of that 'closed minded me'and deeply regret not taking 2 seconds out of my precious day to say "well thank you, how are you?" I am pleased to say i feel completly comfortable talking to any disabled person now and i hate watching the ignorent ones walking stiffly passed.
I was at a friends birthday party recently and met one of her relatives i had heard was in hospital with cardiac problems, she had mentioned him before in passing a few times but had never said how serious the heart problems were or that he in fact had Downs Syndrome. I had a great chat to him he is a lovely boy, well a man really, he is turning 18 in November and VERY excited about it! He was telling me that he was a bit sad because all his brothers and sisters were married now and he wasnt, but he does have a girlfriend he sees quite a bit and he wants to marry her someday :)
After a chat with his parents i found out he had only recently come out of hospital after having a valve in his heart replaced and that he was expected to have ongoing complications and will be lucky to see his 25th Birthday. I had heard that DS could cause Cardiac problems but i was unaware of the frequency and seriousness of this.
* On a different note, Some great news! My MIL is home again and feeling much better, they have no idea what caused the problem but a batch of scans and tests reveiled no Pnemonia and no Clot (THANK GOODNESS!)so at this point she just has to take it easy at home and see what happens.
I was at a friends birthday party recently and met one of her relatives i had heard was in hospital with cardiac problems, she had mentioned him before in passing a few times but had never said how serious the heart problems were or that he in fact had Downs Syndrome. I had a great chat to him he is a lovely boy, well a man really, he is turning 18 in November and VERY excited about it! He was telling me that he was a bit sad because all his brothers and sisters were married now and he wasnt, but he does have a girlfriend he sees quite a bit and he wants to marry her someday :)
After a chat with his parents i found out he had only recently come out of hospital after having a valve in his heart replaced and that he was expected to have ongoing complications and will be lucky to see his 25th Birthday. I had heard that DS could cause Cardiac problems but i was unaware of the frequency and seriousness of this.
* On a different note, Some great news! My MIL is home again and feeling much better, they have no idea what caused the problem but a batch of scans and tests reveiled no Pnemonia and no Clot (THANK GOODNESS!)so at this point she just has to take it easy at home and see what happens.
Tuesday, October 2, 2007
31 for 21
This October is Downs Syndrome Awareness month and i read on Michelles blog about the 31 (days in Oct) for 21 (Trisomy 21 aka Downs Syndrome) idea.
So basically every day this month we each will blog a post and try to make a part of it relevent to raising awareness of Downs Syndrome.
I will try my best to honour this!
Here is a link to the lovely Michelle's Blog about her beautiful daughter Kayla
Big Blueberry Eyes/
So basically every day this month we each will blog a post and try to make a part of it relevent to raising awareness of Downs Syndrome.
I will try my best to honour this!
Here is a link to the lovely Michelle's Blog about her beautiful daughter Kayla
Big Blueberry Eyes/
Monday, October 1, 2007
Reading the blogs this morning has gotton me thinking, Nancy spoke of the grief associated with old toys and baby clothes that brings back awful memories of infancy and the sense of Loss.
I was thinking that i dont really hold any value to the toys or clothes themselves, i figure this must be because these were not Jaidens to begin with, they were Liams and were passed on to Jaiden then to Lachie so they dont hold specific memories of any one child.
I suddenly realised that i am starting to resent Lachlan. This makes me feel so awful, my beautiful baby boy who is developing perfectly and now speaking so many words, with a gorgeous smile and i can only look at him with sadness. I love him, of course i do but i just cant get excited over his milestones the way i should.
Everyone gets so excited when he uses several words together and demonstrates that he has perfect understanding of everything going on around him, they clap and cheer and all i want to do is cry. Its eating me up that oneday he will casually pass Jaiden cognitivly without even blinking. I try and think, hey he hasnt got a diagnosis at the moment anyway, maybe the light is going to switch on, i will wake up tomorrow morning and everything will be 'normal'.
I also feel guilty for wanting 'normal', if all was 'normal' i would never have had the fulfilling experience of 'meeting'all of these wonderful people in the blogging community, im in some ways so glad that i have had this oppertunity, my eyes are so wide open to the world now. Rollercoaster.
In another note, my Mother in Law had a hip replacement last week and all was going swimmingly, she was discharged from hospital on Saturday and looking good except for some excessive swelling in her leg - they sent her home with blood thinner injections to prevent clots, but she got admitted back to Hospital last night when she woke up and couldnt breathe - All i know at this stage is they are worried she may have a clot and that it or part of it has gone to her lung, or of pnemonia. So fingers crossed it will be the latter and nothing a good dose of antibiotics wont fix.
I was thinking that i dont really hold any value to the toys or clothes themselves, i figure this must be because these were not Jaidens to begin with, they were Liams and were passed on to Jaiden then to Lachie so they dont hold specific memories of any one child.
I suddenly realised that i am starting to resent Lachlan. This makes me feel so awful, my beautiful baby boy who is developing perfectly and now speaking so many words, with a gorgeous smile and i can only look at him with sadness. I love him, of course i do but i just cant get excited over his milestones the way i should.
Everyone gets so excited when he uses several words together and demonstrates that he has perfect understanding of everything going on around him, they clap and cheer and all i want to do is cry. Its eating me up that oneday he will casually pass Jaiden cognitivly without even blinking. I try and think, hey he hasnt got a diagnosis at the moment anyway, maybe the light is going to switch on, i will wake up tomorrow morning and everything will be 'normal'.
I also feel guilty for wanting 'normal', if all was 'normal' i would never have had the fulfilling experience of 'meeting'all of these wonderful people in the blogging community, im in some ways so glad that i have had this oppertunity, my eyes are so wide open to the world now. Rollercoaster.
In another note, my Mother in Law had a hip replacement last week and all was going swimmingly, she was discharged from hospital on Saturday and looking good except for some excessive swelling in her leg - they sent her home with blood thinner injections to prevent clots, but she got admitted back to Hospital last night when she woke up and couldnt breathe - All i know at this stage is they are worried she may have a clot and that it or part of it has gone to her lung, or of pnemonia. So fingers crossed it will be the latter and nothing a good dose of antibiotics wont fix.
Thursday, September 27, 2007
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!?
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!?
Tuesday, September 25, 2007
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
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
Sunday, September 23, 2007
'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 :-)
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 :-)
Wednesday, September 19, 2007
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.
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.
Sunday, September 16, 2007
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!
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!
Saturday, September 15, 2007
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!
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!
Thursday, September 13, 2007
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!
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!
Sunday, September 9, 2007
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.
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.
Thursday, September 6, 2007
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?
Sunday, September 2, 2007
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!
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.
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.
Wednesday, August 29, 2007
"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!!!!!"
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!!!!!"
Sunday, August 26, 2007
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.
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.
Monday, August 20, 2007
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.
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.
Thursday, August 16, 2007
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!
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!
Tuesday, August 14, 2007
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...
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...
Monday, August 13, 2007
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.
Monday, August 6, 2007
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.
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.
Sunday, August 5, 2007
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!!
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!!
Tuesday, July 31, 2007
Baby Austin.
A lovely lady i am a member of a forum with, struggled for years to have a baby.
Finally baby Austin came into the world and life was bliss, when Austin was 8 weeks old he had to go to hospital as he vomited up blood. It turned out that the blood had nothing to do with anything, but during ruitine scans the doctors discovered a cancerous neuroblastoma in his stomach. After a very frightening few weeks of treatment it was determined that the cancer was in remission. Life was bliss again.
Today they discovered that the cancer is back, and worse it has spread considerably through his liver and other parts of his body. I am asking everyone to send their prayers for some sort of miricle for Austin and pray that his wonderful parents are strong enough to get through this.
Poor little fella is only 4 months old, its so unfair it just breaks my heart...
Finally baby Austin came into the world and life was bliss, when Austin was 8 weeks old he had to go to hospital as he vomited up blood. It turned out that the blood had nothing to do with anything, but during ruitine scans the doctors discovered a cancerous neuroblastoma in his stomach. After a very frightening few weeks of treatment it was determined that the cancer was in remission. Life was bliss again.
Today they discovered that the cancer is back, and worse it has spread considerably through his liver and other parts of his body. I am asking everyone to send their prayers for some sort of miricle for Austin and pray that his wonderful parents are strong enough to get through this.
Poor little fella is only 4 months old, its so unfair it just breaks my heart...
Tuesday, July 24, 2007
That 'R' Word again...
I spent the weekend with a close friend who had come to visit from Sydney, it was wonderful to see her and catch up again. Though, throughout her visit there was one thing that was nagging at me – the manner in which the word ‘retard’ just casually slipped off her tongue. “I dropped it, don’t mind me I’m just a retard.” “I forgot, I’m such a retard”. Things like that.
The miss use of the word made me cringe and I wanted to scream at her
“YOU are NOT a retard you are just bloody clumsy!! Show some respect”. I held it in because I am aware that a few short years ago I wouldn’t have blinked and in my naivety may have been guilty of the very same thing.
I realize that she doesn’t mean what she says as an insult in any way but it still hurts.
I guess I’d better get used to it.
I worry what impact this is going to have on Jaiden’s siblings as he grows, how often am I going to hear “oh, his brothers that retarded boy” and how is hearing these things going to effect Jaiden?
I hate that these kids are aware they are different, and I hate that there is nothing we can do to ‘fix’ it for them.
Liam is already aware Jaiden is a bit different, I don’t know if he just thinks its cause Jai is younger than him or if he senses it is something more. Liam talks to Jaiden in a different manner to the way he talks to other people – I hear him subconsciously simplify his sentences and he tends to show him things more than he describes them. Liam still gets frustrated with him, although usually this is if Jaiden destroys something of his rather than if he doesn’t understand what is being asked of him.
I just hope that when his brothers do start asking questions, I can answer them.
The miss use of the word made me cringe and I wanted to scream at her
“YOU are NOT a retard you are just bloody clumsy!! Show some respect”. I held it in because I am aware that a few short years ago I wouldn’t have blinked and in my naivety may have been guilty of the very same thing.
I realize that she doesn’t mean what she says as an insult in any way but it still hurts.
I guess I’d better get used to it.
I worry what impact this is going to have on Jaiden’s siblings as he grows, how often am I going to hear “oh, his brothers that retarded boy” and how is hearing these things going to effect Jaiden?
I hate that these kids are aware they are different, and I hate that there is nothing we can do to ‘fix’ it for them.
Liam is already aware Jaiden is a bit different, I don’t know if he just thinks its cause Jai is younger than him or if he senses it is something more. Liam talks to Jaiden in a different manner to the way he talks to other people – I hear him subconsciously simplify his sentences and he tends to show him things more than he describes them. Liam still gets frustrated with him, although usually this is if Jaiden destroys something of his rather than if he doesn’t understand what is being asked of him.
I just hope that when his brothers do start asking questions, I can answer them.
Thursday, July 19, 2007
Assessments
I took Jaiden to the Speech Therepy assessment take two today, He lasted approx 8 minutes before getting completly sick of it and wanting out! We managed to finish despite the lack of enthusiasm from Jai.
Well, he did ok.
The lady ( i really must remember her name!)concluded that he is definatly at a "level 2" although he doesnt understand who, when and why questions at that level but he did understand one question at level 3...
She has given me some strategies to work on understanding those questions and will see us fortnightly for now. She thinks that once we get him to understand the who, when and why, he should start catching up quite quickly :D
At the end of the session after watching Jaiden (at the time in quite a manic mood) she asked if we had spoken to anyone about his behaviour.( i could hear her thinking ADHD) i told her a bit about Jais habits, personality and anxiety issues and after she asked me a bunch of questions she has reffered me to a psychologist ( ok reffered JAIDEN to a psychologist - not ME :P ) and also an OT for assessment to help with some sensory issues. Whoohoo! somebody cares!!
So now i wait for phone calls from the Psych and OT and see where that takes us.
Well, he did ok.
The lady ( i really must remember her name!)concluded that he is definatly at a "level 2" although he doesnt understand who, when and why questions at that level but he did understand one question at level 3...
She has given me some strategies to work on understanding those questions and will see us fortnightly for now. She thinks that once we get him to understand the who, when and why, he should start catching up quite quickly :D
At the end of the session after watching Jaiden (at the time in quite a manic mood) she asked if we had spoken to anyone about his behaviour.( i could hear her thinking ADHD) i told her a bit about Jais habits, personality and anxiety issues and after she asked me a bunch of questions she has reffered me to a psychologist ( ok reffered JAIDEN to a psychologist - not ME :P ) and also an OT for assessment to help with some sensory issues. Whoohoo! somebody cares!!
So now i wait for phone calls from the Psych and OT and see where that takes us.
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