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...
Tuesday, July 31, 2007
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.
Ahh the school Holidays... We went to a shopping centre and were pleased to discover the likes of Spongebob, Chuckie & Angelica and a large Toy Story themed jumping castle in the food court. So this combined Jaidens current favourite things nicely - over sized 3D cartoon characters willing to hug him, somthing he is allowed to jump on (unlike mummys bed!) and hot chips! It took him a little bit over 4 months to stop telling every passer by and his dog about his sponge bob watch, and i have a feeling it could be a similar time until the neighbourhood and i stop hearing
"i saw punge bob and he give me cuddle!!". LOL
Its been a very cold winter, we were forcast to have a top of 3 degrees celcius ( Zero = freezing for the Americans amongst us ;-)! )with a low of -7. Brrrr
On that particular day we were expecting snow falls ( it never snows in Canberra) but instead we were blessed with unseasonal warmth! So the kids and i hightailed it to the backyard to soak up some much needed sun.
Tuesday, July 17, 2007
Speech Therepy
Well after a short 18months on the waiting list we had our first speech appointment yesterday.
Jaiden is talking quite well now so i was a little skeptical about this appointment.
This session was an assessment session so they could write up a plan for Jaiden.
He had to do a little test but couldnt finish it as he got too tired and decided that he would much rather play with a toy bus than listen or talk to this lady anymore.
I was glad that the lady (ive forgotton her name) got to see an example of Jaidens inconsistancy with understanding and answering questions, i often have trouble trying to explain this and she was quite puzzled by it.
ie: Jai knows all of his colours backwards but depending on the object he is looking at or the question that is asked he wont always respond correctly - the lady had a picture puzzle with diff coloured animals in it and she asked Jai what colour the fish was and he responded 1st 'fish', then 'big fish', 3rd time he got quite antsy and replied "Its a FISH!"
The said fish had alot of detail on him, scales - not just eyes, tail and fins. I think there was just too much going on in the picture for him to process - he has a keen eye for detail and alot of the time he seems to miss the forest for the trees if you know what i mean.)
Later on the lady was reading through a book with him and there was a simple drawing of a fish and she asked "what colour is the fish ?" and Jaiden goes "Orange - ooh green frog!!" and starts naming everything on the page and its colour!
We have a follow up to finish the test on friday and then we will put an ongoing plan into place.
Jaiden is talking quite well now so i was a little skeptical about this appointment.
This session was an assessment session so they could write up a plan for Jaiden.
He had to do a little test but couldnt finish it as he got too tired and decided that he would much rather play with a toy bus than listen or talk to this lady anymore.
I was glad that the lady (ive forgotton her name) got to see an example of Jaidens inconsistancy with understanding and answering questions, i often have trouble trying to explain this and she was quite puzzled by it.
ie: Jai knows all of his colours backwards but depending on the object he is looking at or the question that is asked he wont always respond correctly - the lady had a picture puzzle with diff coloured animals in it and she asked Jai what colour the fish was and he responded 1st 'fish', then 'big fish', 3rd time he got quite antsy and replied "Its a FISH!"
The said fish had alot of detail on him, scales - not just eyes, tail and fins. I think there was just too much going on in the picture for him to process - he has a keen eye for detail and alot of the time he seems to miss the forest for the trees if you know what i mean.)
Later on the lady was reading through a book with him and there was a simple drawing of a fish and she asked "what colour is the fish ?" and Jaiden goes "Orange - ooh green frog!!" and starts naming everything on the page and its colour!
We have a follow up to finish the test on friday and then we will put an ongoing plan into place.
Thursday, July 12, 2007
Photo time
Playing the " 'tar, like wiggles!" (latest favourite passtime) I got a really cute video of this on my photo camera but it doesnt have sound and it isnt worth seeing with out the cute "inny winny spider" song to accompany it! + i dont know how to use You Tube yet!
Mmmm.. Spaghettie Bolognaise....
Monday, July 9, 2007
Ahh.. tuesday morning, the sun is actually shining and the birds are chirping.
Jaiden got dressed without screaming and Lachie is having a morning snooze, mums coming over to visit this arvo. Oh plus i have coffee!
Life is good.
I had a Reality Check last night which involved bawling my eyes out infront of the television (brothers&sisters - the one where the baby died).
I have been an emotional wreck of late, i dont know whats causing it - i cry at the TV on a regular basis (including the world vision Ad's) which is not really somthing i do.
But now all those bad things that happen on TV are alot closer to home and alot more familier all of a sudden.
With my new found blog/forum lifestyle... Im exposed to a whole new world of people that i care about and given the situation with Jaiden many of my new 'friends' have kids that have got serious medical problems. These kids have been to hell and back through their short little lives. I admire the strength and courage of their parents - who never, ever give up hope, even under the worst of circumstances.
The problems i have are so minor by comparison that i feel ridiculous for worrying over them and writing about them, yet everytime i do, i am only met with love and support, even from those who have it so much worse.
I have three healthy little boys, a loving husband and supportive family. Everything else is a bonus. So i now vow to spend more time focusing on the good things, less time on the bad things - and do what counts, give my kids the best life i can.
Jaiden got dressed without screaming and Lachie is having a morning snooze, mums coming over to visit this arvo. Oh plus i have coffee!
Life is good.
I had a Reality Check last night which involved bawling my eyes out infront of the television (brothers&sisters - the one where the baby died).
I have been an emotional wreck of late, i dont know whats causing it - i cry at the TV on a regular basis (including the world vision Ad's) which is not really somthing i do.
But now all those bad things that happen on TV are alot closer to home and alot more familier all of a sudden.
With my new found blog/forum lifestyle... Im exposed to a whole new world of people that i care about and given the situation with Jaiden many of my new 'friends' have kids that have got serious medical problems. These kids have been to hell and back through their short little lives. I admire the strength and courage of their parents - who never, ever give up hope, even under the worst of circumstances.
The problems i have are so minor by comparison that i feel ridiculous for worrying over them and writing about them, yet everytime i do, i am only met with love and support, even from those who have it so much worse.
I have three healthy little boys, a loving husband and supportive family. Everything else is a bonus. So i now vow to spend more time focusing on the good things, less time on the bad things - and do what counts, give my kids the best life i can.
Thursday, July 5, 2007
Bad Day
Monday, our morning began with Jai waking me up at around 6am crying because he cant find one of his shoes - meanwhile he is standing at the foot of my bed starkers in just socks and one gumboot.
I ask Jaiden to go and put on some clothes and i will help him find his other shoe after i have a shower.
2 min later Jaiden runs in still crying, wearing two socks and one gumboot "cant find shoes!!" i am just jumping into the water and so i repeated - "go get your shirt and pants on and i will help you in a minute." about 1 1/2 minutes later a screaming Jaiden runs in "cant find shoes!!!!!!"
sigh.................
Goodmorning Vietnam.
So i watch Jaiden screaming on the bathroom floor for his shoes for 5 minutes while i wash the last of the shampoo bubbles from my hair and quickly jump out. Dressed in a towel i retrieve Jai's clothing and the missing gumboot and set about getting myself clothed. Now the other two kids are up and dressed, everyone is hungry.
So after the breakfast fights about wanting cornflakes, not wanting cornflakes, wanting cornflakes again and throwing a tanty and accidently spilling now very much wanted cornflakes on the floor. I set Jaiden up with a new bowl of cereal which he eats with an extreamly grumpy expression on his face. Coffee for Mummy !
Time for school, Jaiden doesnt want to go to school and starts screaming no!no!no! then i tell him we can go see Jenny (his teacher) and he perks right up, "go see Jenny?" me- "yes", 20 "we go see Jenny?" 's later and me with slightly greyer hair than i left with, we are in the car and on the way...
Jaiden starts freaking out about not hitting the 'animals' which are actually little 'keep left' signs on the road (i have NEVER hit a sign, but since someone ran into the back of our car 6months ago Jaiden is scared of street signs and white cars....)
We make it to Liams pre-school with out hitting any 'animals' and drop him off. Jaiden see's the play equipment and is straight for it up the top and falling off the firemans pole before i have even manovered the stroller through the gate. i get the usual 'cant you control your child ?' looks from the other parents kiss Liam good bye, physically uncurl Jaiden from the play equipment screaming and lock him in the toddler seat on the stroller so he cant run away. We reach the car and he stops screaming and starts saying he wants Jenny. Half way to Jaidens school he doesnt want Jenny anymore and by the time we arrive i drag him kicking and screaming with one hand Lachie toddling along in the other.
Once inside the gate Jaiden undergoes an angelic transformation.
Smiling he runs inside, "Hi Jenny!, Hi Caffy!" i help him put away his lunch box and drink, "bye Jaiden" ,"Bye Mummy, love you!"
Aww he is so sweet i hear Jenny and Cathy say, but Lachie and i are already halfway out the door ready to enjoy our 2 hours of peace and quiet and not think about the future.
Just as i finish typing this Jaiden looks up at me and says "L says la!" maybe it will all be ok after all.
I ask Jaiden to go and put on some clothes and i will help him find his other shoe after i have a shower.
2 min later Jaiden runs in still crying, wearing two socks and one gumboot "cant find shoes!!" i am just jumping into the water and so i repeated - "go get your shirt and pants on and i will help you in a minute." about 1 1/2 minutes later a screaming Jaiden runs in "cant find shoes!!!!!!"
sigh.................
Goodmorning Vietnam.
So i watch Jaiden screaming on the bathroom floor for his shoes for 5 minutes while i wash the last of the shampoo bubbles from my hair and quickly jump out. Dressed in a towel i retrieve Jai's clothing and the missing gumboot and set about getting myself clothed. Now the other two kids are up and dressed, everyone is hungry.
So after the breakfast fights about wanting cornflakes, not wanting cornflakes, wanting cornflakes again and throwing a tanty and accidently spilling now very much wanted cornflakes on the floor. I set Jaiden up with a new bowl of cereal which he eats with an extreamly grumpy expression on his face. Coffee for Mummy !
Time for school, Jaiden doesnt want to go to school and starts screaming no!no!no! then i tell him we can go see Jenny (his teacher) and he perks right up, "go see Jenny?" me- "yes", 20 "we go see Jenny?" 's later and me with slightly greyer hair than i left with, we are in the car and on the way...
Jaiden starts freaking out about not hitting the 'animals' which are actually little 'keep left' signs on the road (i have NEVER hit a sign, but since someone ran into the back of our car 6months ago Jaiden is scared of street signs and white cars....)
We make it to Liams pre-school with out hitting any 'animals' and drop him off. Jaiden see's the play equipment and is straight for it up the top and falling off the firemans pole before i have even manovered the stroller through the gate. i get the usual 'cant you control your child ?' looks from the other parents kiss Liam good bye, physically uncurl Jaiden from the play equipment screaming and lock him in the toddler seat on the stroller so he cant run away. We reach the car and he stops screaming and starts saying he wants Jenny. Half way to Jaidens school he doesnt want Jenny anymore and by the time we arrive i drag him kicking and screaming with one hand Lachie toddling along in the other.
Once inside the gate Jaiden undergoes an angelic transformation.
Smiling he runs inside, "Hi Jenny!, Hi Caffy!" i help him put away his lunch box and drink, "bye Jaiden" ,"Bye Mummy, love you!"
Aww he is so sweet i hear Jenny and Cathy say, but Lachie and i are already halfway out the door ready to enjoy our 2 hours of peace and quiet and not think about the future.
Just as i finish typing this Jaiden looks up at me and says "L says la!" maybe it will all be ok after all.
Tuesday, July 3, 2007
Trivia
I went to my first Trivia night on Saturday night, to raise money for a local school. It was Fantastic, I havnt had that much fun in years!
I didnt know what to expect as Joh and i headed down to the local club which is situated a conveinient 300 meters from our houses. I made a grand entrance by tripping over my feet and smacking into the glass as i entered through those damned rotating doors - i am sure the people smirking behind the recepton desk have a speed control button they use to attack unsuspecting patrons upon entry... As we signed into the club our friend Libby who was organizing this event was looking extreamly stressed, running around in circles holding a ciggerette lighter and a packet of condoms. Hmm - i was a tad concerned that she may have been fetching ciggerettes out of her handbag and grabbed the wrong packet.. but i bit my tongue and decided to say nothing.
We made our way down the stairs and into a corridoor jammed full of people lining up for tickets. Joh bumped into several people she used to know including a large women with a booming voice and unique taste in clothing who apparently is the best hairdresser in Canberra - though looking at her bleached blonde locks i dont think i will be taking my chances anytime soon.
As we entered we found our table- number 11, we were seated with a group of lovely ladies and one man. The man had travelled all the way from the blue mountains near sydney to be at this event so i started to worry what i had gotton myself into! After a glass of wine, or two to relax we started doing our treasure hunt collection which included a feather, hairtie, brown lipstick a condom... At least that explained Libby! Then our lovely host for the evening introduced herself. She looked and spoke exactly like Lorelai Gilmore from the Gilmore girls. The Ms Gilmore look-alike informed us that answers were for sale, there were bottles of wine to give away, judges were open to bribes and she drinks a sangria with lime thankyou. We started the quiz and i was quite suprised as i actually managed to answer many of the questions our table did especially well in the section titled -'trashy celebrities' unfortunatly there were no Paris Hilton questions, how dissapointing!
Mr travelled-from-the-blue-mountains looked a little peeved at the table of slightly tipsy women chatting constantly and saying our answer theorys a little too loudly, but he redeemed himself by successfully answering a Who-am-i? question from the first clue - "i was born in 1951" .
Unfortunatly my entry of "Couch" into the Playdough cherades didnt win us a bottle of wine - i thought it was pretty good thank you very much i even included two armchairs and an ottomen for good measure!
So after many laughs some coin tossing, silent auction bidding and buying judges drinks, We schemed plotted, and bribed our way to a respectable 4th Place. Out of 14 tables, us girls were happy with that but Mr-Blue-Mountains left very quickly...
Joh and i decided to head upstairs and have a few drinks as we knew this oppertunity would not present its self until the next trivia night. So after a few beverages we donated a few bucks to the resident poker machines and staggered home to bed.
I didnt know what to expect as Joh and i headed down to the local club which is situated a conveinient 300 meters from our houses. I made a grand entrance by tripping over my feet and smacking into the glass as i entered through those damned rotating doors - i am sure the people smirking behind the recepton desk have a speed control button they use to attack unsuspecting patrons upon entry... As we signed into the club our friend Libby who was organizing this event was looking extreamly stressed, running around in circles holding a ciggerette lighter and a packet of condoms. Hmm - i was a tad concerned that she may have been fetching ciggerettes out of her handbag and grabbed the wrong packet.. but i bit my tongue and decided to say nothing.
We made our way down the stairs and into a corridoor jammed full of people lining up for tickets. Joh bumped into several people she used to know including a large women with a booming voice and unique taste in clothing who apparently is the best hairdresser in Canberra - though looking at her bleached blonde locks i dont think i will be taking my chances anytime soon.
As we entered we found our table- number 11, we were seated with a group of lovely ladies and one man. The man had travelled all the way from the blue mountains near sydney to be at this event so i started to worry what i had gotton myself into! After a glass of wine, or two to relax we started doing our treasure hunt collection which included a feather, hairtie, brown lipstick a condom... At least that explained Libby! Then our lovely host for the evening introduced herself. She looked and spoke exactly like Lorelai Gilmore from the Gilmore girls. The Ms Gilmore look-alike informed us that answers were for sale, there were bottles of wine to give away, judges were open to bribes and she drinks a sangria with lime thankyou. We started the quiz and i was quite suprised as i actually managed to answer many of the questions our table did especially well in the section titled -'trashy celebrities' unfortunatly there were no Paris Hilton questions, how dissapointing!
Mr travelled-from-the-blue-mountains looked a little peeved at the table of slightly tipsy women chatting constantly and saying our answer theorys a little too loudly, but he redeemed himself by successfully answering a Who-am-i? question from the first clue - "i was born in 1951" .
Unfortunatly my entry of "Couch" into the Playdough cherades didnt win us a bottle of wine - i thought it was pretty good thank you very much i even included two armchairs and an ottomen for good measure!
So after many laughs some coin tossing, silent auction bidding and buying judges drinks, We schemed plotted, and bribed our way to a respectable 4th Place. Out of 14 tables, us girls were happy with that but Mr-Blue-Mountains left very quickly...
Joh and i decided to head upstairs and have a few drinks as we knew this oppertunity would not present its self until the next trivia night. So after a few beverages we donated a few bucks to the resident poker machines and staggered home to bed.
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