So, 2 weeks before the end of School last year, the special education unit asks me to come in to discuss what will work best with the funding and teachers they have for Jonathan for Grade 1.
They explain that the government supplies 1 teacher aide for 5 hours per week for each child with special needs. If they apply for more hours they can get an extra 2... or something like that. So out of 5 school days Jono was able to receive 1 day of support.
Then we discussed Jono arriving at school a little later, and they said that he would be able to stay up until first lunch... so around 2 hours a day.
Frustration is a good word for how I felt about this.
I then went to the Special School across the road and talked to them, they said that their would definitely be a spot for Jono if he was eligible, but to be eligible he needed to be Intellectually Impaired. 'Great - another label' was my thoughts.
Back to the school guidance officer, and they said the process to get a child who is untestable qualified for special school takes about 2 months. and as school is ending in 2 weeks, its unlikely they will be able to sort this before next year.
Next stop, our paediatrician, and an assessment from them with a letter recommending them to go to the special school.
After that, back to the guidance officer who calls in their supervisor and talks to the principal of the special school.
Then we arrange an appointment with all parties to see Jono in his class environment and how he interacts with other children and his capacity for mainstream school.
Say it with me.... Tearing my hair out!!!!
So, in this narrow timeframe, there was a heck of a lot to organise, and I just wanted to know where he could go and where was best for him, and I didn't want to label him as I didn't know what adverse effects that label may have for his future endeavors, as well as the stigma it may carry. There where a lot of tears and trials in getting this organised.
Then, on the second last day of school we met with the area supervisor. When she came her first question was... where do the parents want him to go? The absolute relief of dealing with someone who was willing to work with us on what's best for our child was just... so hard to put into words.
There were many tears along the way, feelings of inadequacy, and just the short time span. But we got it organized, he is in Special School now, and thriving. The teachers are great, if he's 30 min late because he didn't want to wear his shirt this morning and took some extra time to resolve it... they don't mind. If its swimming day and putting shoes on when you wear swimmers doesn't make sense... that's ok.
It's just freedom, and a chance for him to grow and learn at the pace he is able.
Thursday, April 12, 2007
So, on our holiday
Which was a while ago now >.< Life gets busy :)
We drove the 1700km's to Cairns with all three kids in the car, and it was fun, we took 3 days up and 2 days back and stayed in hotels. It really was an adventure, we are just lucky that our kids enjoy traveling I think.
We stayed with Grandpa for about 8 days, all the kids piled in with us, and we drove each other nuts. Jonathan's lack of concern for special things was a minor stress to Grandpa, and the lack of things for the kids to do at his house was a minor stress to us. We did go out a lot, but Sarah still needed a daytime nap, so it took a bit of organization. I'm glad we drove up because then we had a car to drive around as we wanted.
We took all the kids to Kuranda, and decided to drive up as we thought they would cope better. On the way back Sarah and I rode the Skyrail, while Daddy took the boys on an army duck. Jono spent the entire trip with his hands over his ears for the noise, but seemed to enjoy himself.
We visited the Butterfly farm, and all the kids really enjoyed it, Jono was just prancing up and down the paths, while Daniel had a butterfly attach it self to his shirt for the entire tour. Then we also visited the Bird Sanctuary with these amazing Macaws that you could hand feed near the froont... these really grabbed Jono's attention, and he constantly wanted to feed them, even when they lost interest. It really was a wonderful time.
We visited quite a few play spaces while we were there, and the local Golden Arches saw us a bit. Once we moved into caravan parks we spent a lot of time in their playground and pool, as well as just chilling in front of the TV with the lego's. It really was just a great time away from home. We were also very glad to get back home at the end of it and have a little more space and 'routine'.
We drove the 1700km's to Cairns with all three kids in the car, and it was fun, we took 3 days up and 2 days back and stayed in hotels. It really was an adventure, we are just lucky that our kids enjoy traveling I think.
We stayed with Grandpa for about 8 days, all the kids piled in with us, and we drove each other nuts. Jonathan's lack of concern for special things was a minor stress to Grandpa, and the lack of things for the kids to do at his house was a minor stress to us. We did go out a lot, but Sarah still needed a daytime nap, so it took a bit of organization. I'm glad we drove up because then we had a car to drive around as we wanted.
We took all the kids to Kuranda, and decided to drive up as we thought they would cope better. On the way back Sarah and I rode the Skyrail, while Daddy took the boys on an army duck. Jono spent the entire trip with his hands over his ears for the noise, but seemed to enjoy himself.
We visited the Butterfly farm, and all the kids really enjoyed it, Jono was just prancing up and down the paths, while Daniel had a butterfly attach it self to his shirt for the entire tour. Then we also visited the Bird Sanctuary with these amazing Macaws that you could hand feed near the froont... these really grabbed Jono's attention, and he constantly wanted to feed them, even when they lost interest. It really was a wonderful time.
We visited quite a few play spaces while we were there, and the local Golden Arches saw us a bit. Once we moved into caravan parks we spent a lot of time in their playground and pool, as well as just chilling in front of the TV with the lego's. It really was just a great time away from home. We were also very glad to get back home at the end of it and have a little more space and 'routine'.
Tuesday, February 20, 2007
Well... we got busy...
We went away to Cairns (the top end of Australia) for a holiday in September, and I had no Internet access... so the blog got put on hold :)
We had a great 3 wks, Jono was very forthcoming to people in the swimming pool, and jumped wholeheartedly onto complete strangers backs, fortunately they were very relaxed up there and it didn't cause issues. There was also a moment where some kids were running races and tried to get Jono to join in, I explained he was Autistic and didn't understand but thanked them for trying to include him, two minutes later they were getting him to do high fives with them.
Sarah and Daniel also enjoyed being away from home, and loved Grandpa's dog. We all had a really good time, and I think Jono only melted down once or twice. We drove the whole way there and back 1700km's, with the three kids, and they all coped really well... Rob and I were quite amazed.
Towards the end of the year, Jono plateaued, he didn't really progress in speech or school, and I think he knew school was finishing as he got more difficult to direct. The last two weeks of school, I had lots of concerns and dramas about where he should go for this year, as I wanted him in special school, and he had to be intellectually impaired to be able to go. More 'labels', stress, choices, decisions, questions... it was hard, but we got through it, and he is now in Grade one at special school.. and he is doing wonderfully! More on that later.
We also had an very interesting summer holiday, it was too long and not long enough, but we all did very well... and more on that later too. Nice to start blogging again, he is my special man, and life is busy, but good :)
We had a great 3 wks, Jono was very forthcoming to people in the swimming pool, and jumped wholeheartedly onto complete strangers backs, fortunately they were very relaxed up there and it didn't cause issues. There was also a moment where some kids were running races and tried to get Jono to join in, I explained he was Autistic and didn't understand but thanked them for trying to include him, two minutes later they were getting him to do high fives with them.
Sarah and Daniel also enjoyed being away from home, and loved Grandpa's dog. We all had a really good time, and I think Jono only melted down once or twice. We drove the whole way there and back 1700km's, with the three kids, and they all coped really well... Rob and I were quite amazed.
Towards the end of the year, Jono plateaued, he didn't really progress in speech or school, and I think he knew school was finishing as he got more difficult to direct. The last two weeks of school, I had lots of concerns and dramas about where he should go for this year, as I wanted him in special school, and he had to be intellectually impaired to be able to go. More 'labels', stress, choices, decisions, questions... it was hard, but we got through it, and he is now in Grade one at special school.. and he is doing wonderfully! More on that later.
We also had an very interesting summer holiday, it was too long and not long enough, but we all did very well... and more on that later too. Nice to start blogging again, he is my special man, and life is busy, but good :)
Tuesday, September 19, 2006
Strange Hurts
Last Sunday at Church, he needed to go to the toilet before church started. Nothing unusual in this, he knows where the toilets are, he can toilet himself quite well now... so off he goes.
A few minutes later the cries of frustration start ringing out... so I head in to see whats wrong. He's standing at the bowl, but nothing is coming out... I'm not sure if he has allready done anything, but he is very distressed.
I went and got hubby to see if he could encourage him to go... a few minutes later I head back and nothing has still happened, and he is still standing there frustrated. Daddy has to do some things, so he heads out.
30 minutes later of sitting on the toilet floor next to my distressed crying son, I am thinking to myself... why do I bother going out, why bother trying to get to church, if I spend the time in the toilet there is no point in coming... WHY is my son Autistic?!?!?
There are moments of clarity I get about our situation. I've heard Autism called 'and invisible disability'... and they are right... I can't 'see' anything wrong with this child... yet there is so much 'wrong'. The brain synapses don't connect in the usual fashion, the world around him is a foreign and sometimes scary place, seemingly simple things can get out of control easily. Yet it is no-one's 'fault' not his, not ours.
It just is.
And yet, it is not the sole controlling factor of our lives... and I should not let it be in that place, even if on some days it seems as though it is.
A few minutes later the cries of frustration start ringing out... so I head in to see whats wrong. He's standing at the bowl, but nothing is coming out... I'm not sure if he has allready done anything, but he is very distressed.
I went and got hubby to see if he could encourage him to go... a few minutes later I head back and nothing has still happened, and he is still standing there frustrated. Daddy has to do some things, so he heads out.
30 minutes later of sitting on the toilet floor next to my distressed crying son, I am thinking to myself... why do I bother going out, why bother trying to get to church, if I spend the time in the toilet there is no point in coming... WHY is my son Autistic?!?!?
There are moments of clarity I get about our situation. I've heard Autism called 'and invisible disability'... and they are right... I can't 'see' anything wrong with this child... yet there is so much 'wrong'. The brain synapses don't connect in the usual fashion, the world around him is a foreign and sometimes scary place, seemingly simple things can get out of control easily. Yet it is no-one's 'fault' not his, not ours.
It just is.
And yet, it is not the sole controlling factor of our lives... and I should not let it be in that place, even if on some days it seems as though it is.
Birthday Jumping Castle (sisters)
Well... his sister turned 4, and we finally had the Jumping Castle Party we have been talking about for 6 months.
*Note: Jumping, outdoors, trampolines, all these kind of things he just LOVES*
When the castle turned up, Daniel and Sarah where fascinated, watched every second, where almost on the castle before it finished inflating, and squealing with joy about every small thing that happened while the pump was going.
Jonathan looked at it and cried.
Then he squirmed to get out of Daddy's arms, ran inside and closed every door possible between him and that 'thing'.
We let him calm down, then I took him out and forced him on and made him do a few jumps (squirming and crying the whole way.) I let him go and he hightailed it indoors again, closing all the doors on the way... so I took him up for a bath.
After some water play and calming down, Daddy took him on... and then we couldn't get him off.
New things are scary for most of us... and the fear can often overtake to the point of the irrational (he's never closed so many doors in such quick succession) but I'm very proud of him for facing it, overcoming it and loving it... we are thinking of getting him one for his party next year now :)
*Note: Jumping, outdoors, trampolines, all these kind of things he just LOVES*
When the castle turned up, Daniel and Sarah where fascinated, watched every second, where almost on the castle before it finished inflating, and squealing with joy about every small thing that happened while the pump was going.
Jonathan looked at it and cried.
Then he squirmed to get out of Daddy's arms, ran inside and closed every door possible between him and that 'thing'.
We let him calm down, then I took him out and forced him on and made him do a few jumps (squirming and crying the whole way.) I let him go and he hightailed it indoors again, closing all the doors on the way... so I took him up for a bath.
After some water play and calming down, Daddy took him on... and then we couldn't get him off.
New things are scary for most of us... and the fear can often overtake to the point of the irrational (he's never closed so many doors in such quick succession) but I'm very proud of him for facing it, overcoming it and loving it... we are thinking of getting him one for his party next year now :)
Friday, September 1, 2006
Sleeptime Troubles
I don't know how many of you have troubles with getting your kids to get to sleep in the evenings.
As far as I know, most Autistic people either go to bed really late, or get up in the middle of the night and do stuff - just restlessness... I'm not quite sure why.
Jono used to have dance parties in his room from around 1am to 3am, in the house we are in now we have wooden floorboards.. so that makes things very interesting of itself... we also put a lock on the outside of his door, for safety. If he was up at 3, and went into the kitchen and accidentally put the stove or oven on, our house wouldn't burn down.
Anyways... he's grown out of the dance parties now, and just has trouble getting to sleep, most nights he doesn't crash till around 10pm or so, even tho he gets put in bed 7:30 ish. He's usually up around 7:30 am... so I really don't know how he is coping on so little sleep for his age.
Tonight, he got put in bed at the usual time... I checked on all the kids about 20 min later and both his brother and sister were snoring, but he was still pacing in his room. My hubby and I settled in to watch a movie, and when the movie finished I went up to check on the kids. Jono was not in his bed.. nor in his room... this was very unusual, so I started searching.
I didn't have to look far.. his brother was on a mattress on the floor tonight, and I found Jono on his brothers bed... and as his brother and sister share a room it was very sweet to see all 3 in the one room... awwwwww shucks :)
Now just to get him to actually get to sleep a little earlier ;)
As far as I know, most Autistic people either go to bed really late, or get up in the middle of the night and do stuff - just restlessness... I'm not quite sure why.
Jono used to have dance parties in his room from around 1am to 3am, in the house we are in now we have wooden floorboards.. so that makes things very interesting of itself... we also put a lock on the outside of his door, for safety. If he was up at 3, and went into the kitchen and accidentally put the stove or oven on, our house wouldn't burn down.
Anyways... he's grown out of the dance parties now, and just has trouble getting to sleep, most nights he doesn't crash till around 10pm or so, even tho he gets put in bed 7:30 ish. He's usually up around 7:30 am... so I really don't know how he is coping on so little sleep for his age.
Tonight, he got put in bed at the usual time... I checked on all the kids about 20 min later and both his brother and sister were snoring, but he was still pacing in his room. My hubby and I settled in to watch a movie, and when the movie finished I went up to check on the kids. Jono was not in his bed.. nor in his room... this was very unusual, so I started searching.
I didn't have to look far.. his brother was on a mattress on the floor tonight, and I found Jono on his brothers bed... and as his brother and sister share a room it was very sweet to see all 3 in the one room... awwwwww shucks :)
Now just to get him to actually get to sleep a little earlier ;)
Wednesday, August 23, 2006
Thanks to the inquiring public
How can you explain to people what things you deal with, and what things your child goes through.. when they look like there is no issue at all? How thick should your skin become? Things I have been pondering the past few days.
On the weekend, his older brother had an Akido demonstration, (Japanese martial arts) we turned up early, for him to rehearse, stayed for everyone's presentation, and for the medals at the end... around 4 hours all together.
After 1 and 1/2 hours he got very overwhelmed, cranky and lost it... started crying, so daddy took him outside for a bit. He calmed down and came back in and was ok. After another 20-30 min I wanted him to sit next to me for some food. A lady was sitting to the left of him, and had her shoes off and on the floor next to her. Jono was a bit distressed and fidgety, and kept bumping this ladies shoes. After a few bumps, instead of moving to the left, or picking up her shoes and moving them, she protectively covered her shoes and glared at me... /sigh
Then yesterday I wanted to get some sandpaper from Bunnings, so after picking him up from school, we drove through Macca's to get chips. This was an issue.... we don't go Macca's very much, and when we do we usually stop and play. So he broke into tears, and started panicking - 'this one, this way, turn, play '... and so on. He calmed a little so I decided to brave Bunnings, and thought he could go in the playground there. He was very very sad when we stopped, and didn't want to get out of the car. I got him out after a few minutes, and he didnt want to walk along. I got him into the store (still crying and panicing... but I thought I only want one thing, we'll be quick) I took him to the playground to give him a chance to play... but by now he had no interest. Then we found the water fountains... and they has rocks around them - this provided much joy for quite a few minutes.
After he had calmed right down I thought he would be ready to move on, and tried to get going. but he just couldn't cope... the routine had been broken and he was just too out of sorts... so I decided that the stress on him (and me) was not worth it and went to the car. As we loaded up a man came past and made a comment about Jono being tired... I said 'No, he's autistic, and this is out of routine and he's not coping'.
He was literally screaming the store down, people were looking at us, and I'm sure more than one thought 'what a bad mother'. Ahhh just one of those days.
On the weekend, his older brother had an Akido demonstration, (Japanese martial arts) we turned up early, for him to rehearse, stayed for everyone's presentation, and for the medals at the end... around 4 hours all together.
After 1 and 1/2 hours he got very overwhelmed, cranky and lost it... started crying, so daddy took him outside for a bit. He calmed down and came back in and was ok. After another 20-30 min I wanted him to sit next to me for some food. A lady was sitting to the left of him, and had her shoes off and on the floor next to her. Jono was a bit distressed and fidgety, and kept bumping this ladies shoes. After a few bumps, instead of moving to the left, or picking up her shoes and moving them, she protectively covered her shoes and glared at me... /sigh
Then yesterday I wanted to get some sandpaper from Bunnings, so after picking him up from school, we drove through Macca's to get chips. This was an issue.... we don't go Macca's very much, and when we do we usually stop and play. So he broke into tears, and started panicking - 'this one, this way, turn, play '... and so on. He calmed a little so I decided to brave Bunnings, and thought he could go in the playground there. He was very very sad when we stopped, and didn't want to get out of the car. I got him out after a few minutes, and he didnt want to walk along. I got him into the store (still crying and panicing... but I thought I only want one thing, we'll be quick) I took him to the playground to give him a chance to play... but by now he had no interest. Then we found the water fountains... and they has rocks around them - this provided much joy for quite a few minutes.
After he had calmed right down I thought he would be ready to move on, and tried to get going. but he just couldn't cope... the routine had been broken and he was just too out of sorts... so I decided that the stress on him (and me) was not worth it and went to the car. As we loaded up a man came past and made a comment about Jono being tired... I said 'No, he's autistic, and this is out of routine and he's not coping'.
He was literally screaming the store down, people were looking at us, and I'm sure more than one thought 'what a bad mother'. Ahhh just one of those days.
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