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.
Tuesday, September 19, 2006
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.
Pack up Time
He has recently (for about a week now) taken a great liking to this phrase. He uses it a LOT, at some times it seems reasonable for the use.. at other times, just plain out of sorts.. I'm not sure if he just likes the sound of the words, or has a hidden meaning to them.
I took a video of him the other day in this mode, he is doing pacing on a trail in the front yard, while his brother and sister play in the background... he gets distracted by our cat 'Abby', at the end.
http://www.youtube.com/watch?v=CnJSUAsw36I
I took a video of him the other day in this mode, he is doing pacing on a trail in the front yard, while his brother and sister play in the background... he gets distracted by our cat 'Abby', at the end.
http://www.youtube.com/watch?v=CnJSUAsw36I
Friday, August 11, 2006
Come into my world
Today I took the boys to a playground near Jonathan's school, and it has a fantastic flying fox in it... I can vouch for it being fantastic as it can handle adults :)
So Daniel took first turn, and had about 4 goes, then I said it was Mummy's turn, so I had a few goes then called Jonathan over saying it was his turn. He had a few goes, then I said it was Daniel's turn again - so Jonathan, in sensory mode, goes to the middle of the path and waits for the flying fox to come careering at him so he can then fall down in a pile of jelly as soon as it touches him.
He loves doing this, if we have marbles or a powered toy car, he will go to the end of the hall and lay with his head on the floor waiting for you to throw it directly at him, giggling madly as he gets out of the way at the last minute.
So.. after Daniel had a few more turns, I said it was Jono's turn again, and Danile said that it was his turn to stand in the middle and wait for the flying fox to come at him and he would fall down. Jono loved this. Not only was his big brother sharing, but he was doing what Jono likes to do.
After a while they they went to the helicopter (that you climb into and have to pedal to make it turn), they couldn't get it working at first even though both had a go. Then Jono went elsewhere and Daniel managed to get it going... so he Called to Jono "Come, come"... Jono wasn't ready just yet and kept saying "No!". A little while longer and Jono did go to his brother, and climb all over the helicopter, when he was slipping Daniel held him and helped him up on top, then made the copter turn in circles with his brother sitting on top of it.
It was very special to see them really enjoying each other's company (tho they usually do) and more so that they were taking turns, and Daniel helping Jono, and being involved in the things that he likes, even if they do seem a little strange.
So Daniel took first turn, and had about 4 goes, then I said it was Mummy's turn, so I had a few goes then called Jonathan over saying it was his turn. He had a few goes, then I said it was Daniel's turn again - so Jonathan, in sensory mode, goes to the middle of the path and waits for the flying fox to come careering at him so he can then fall down in a pile of jelly as soon as it touches him.
He loves doing this, if we have marbles or a powered toy car, he will go to the end of the hall and lay with his head on the floor waiting for you to throw it directly at him, giggling madly as he gets out of the way at the last minute.
So.. after Daniel had a few more turns, I said it was Jono's turn again, and Danile said that it was his turn to stand in the middle and wait for the flying fox to come at him and he would fall down. Jono loved this. Not only was his big brother sharing, but he was doing what Jono likes to do.
After a while they they went to the helicopter (that you climb into and have to pedal to make it turn), they couldn't get it working at first even though both had a go. Then Jono went elsewhere and Daniel managed to get it going... so he Called to Jono "Come, come"... Jono wasn't ready just yet and kept saying "No!". A little while longer and Jono did go to his brother, and climb all over the helicopter, when he was slipping Daniel held him and helped him up on top, then made the copter turn in circles with his brother sitting on top of it.
It was very special to see them really enjoying each other's company (tho they usually do) and more so that they were taking turns, and Daniel helping Jono, and being involved in the things that he likes, even if they do seem a little strange.
Friday, August 4, 2006
Its a really, really, really small world
I started this blog with the thought of getting some more people I could talk to who perhaps understood some of what I was facing and going through with having a special boy... and to give me an outlet to be able to talk about what I feel.
Since starting this I have found people near me in physical location, as well as people I have known for a while in different places. I play an on-line computer game, which is fantasty based, and have been a pink-haired gnome for a while in one of the locations, 2 of the players in that location, while across the world, also have kids who have either asperger's or autism.
I have also had a friend at church who has a friend who has a child who is autistic get in touch with me this last week, and her little girl is a year older than Jonathan, but she 'knows'where I am coming from about stuff. I have also started doing step classes at the gym, and just found out that the trainer there has a boy who has aspergers, who is 11 years old... and who's name is also Jonathan.
Then... one of his teacher's aides at school has a son who has aspergers, and he is 18... and one of my long-term friends has a boy who is great friends with our older boy who is starting down the diagnosis trial for apergers. I truly am amazed at just how many people there are around me who actually have some understanding of where I am at, and that we can be a support for each other.
The most encouraging story for me out of these recent people is Jono's teacher aide. She was telling me things she does to help her boy to be able to calmly and appropriately behave and interact, and counting seemed to help a lot, and she counts with Jono... eg, Sit on the mat ...1 ... Cross your legs ... 2 ... and rarely does she need to go to 3, but 3 is him getting taken outside and missing out on the class activity.
But anyway... her son, who is 18, at Jono's age was also pretty much completely non-verbal, just like Jono and had did lots of rocking, where Jono is more a pacer and a flapper... is now a university student doing a double degree in IT and secondary teaching, then he plans to do a degree in Law. May I just say... WOW!! What a great hope and vision for Jono's possible future.
I am also a little stunned by all these people at this particular time of my life, but I am sure it is because I am ready. I have grieved, I have turned to chocolate for comfort (and gained 20kg's), I have gone through disbelief, shock, anger, denial, guilt and so on... and on some days those feelings can come back, but for the most part, I am moving forward, I am gaining confidence about Jono's abilities, and realising more and more a lot of it is really not in my hands anyway. One day at a time, being grateful for what I have.
Since starting this I have found people near me in physical location, as well as people I have known for a while in different places. I play an on-line computer game, which is fantasty based, and have been a pink-haired gnome for a while in one of the locations, 2 of the players in that location, while across the world, also have kids who have either asperger's or autism.
I have also had a friend at church who has a friend who has a child who is autistic get in touch with me this last week, and her little girl is a year older than Jonathan, but she 'knows'where I am coming from about stuff. I have also started doing step classes at the gym, and just found out that the trainer there has a boy who has aspergers, who is 11 years old... and who's name is also Jonathan.
Then... one of his teacher's aides at school has a son who has aspergers, and he is 18... and one of my long-term friends has a boy who is great friends with our older boy who is starting down the diagnosis trial for apergers. I truly am amazed at just how many people there are around me who actually have some understanding of where I am at, and that we can be a support for each other.
The most encouraging story for me out of these recent people is Jono's teacher aide. She was telling me things she does to help her boy to be able to calmly and appropriately behave and interact, and counting seemed to help a lot, and she counts with Jono... eg, Sit on the mat ...1 ... Cross your legs ... 2 ... and rarely does she need to go to 3, but 3 is him getting taken outside and missing out on the class activity.
But anyway... her son, who is 18, at Jono's age was also pretty much completely non-verbal, just like Jono and had did lots of rocking, where Jono is more a pacer and a flapper... is now a university student doing a double degree in IT and secondary teaching, then he plans to do a degree in Law. May I just say... WOW!! What a great hope and vision for Jono's possible future.
I am also a little stunned by all these people at this particular time of my life, but I am sure it is because I am ready. I have grieved, I have turned to chocolate for comfort (and gained 20kg's), I have gone through disbelief, shock, anger, denial, guilt and so on... and on some days those feelings can come back, but for the most part, I am moving forward, I am gaining confidence about Jono's abilities, and realising more and more a lot of it is really not in my hands anyway. One day at a time, being grateful for what I have.
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