We have had 3 major occasions where we have 'lost' Jonathan, as well as many minor ones. The biggest concern for me has always been, how do I find him when he won't respond to his name? Often it's not an issue as he hums while he walks, but lately that is getting less and he is getting more confident.
The first incident was a few years ago now when Rob and Nanna took all the kids up to the local school for a fete. They were in queue for something, and were waiting to buy tickets. Jono was standing behind them with Daniel and Sarah... 'was'... a moment after they turned away, he was gone... there was too many things of interest to look at, and he took off. As soon as they realised (seconds later) they started searching and spent a heart-stopping 40 minutes looking for him, at the rides, in and out of the classrooms, all over the school grounds, get the police involved... and eventually found him in one of the classrooms just having a look around.
He wasn't concerned about being seperated, he didn't know it was good to tell someone where he was going, he just wanted to have a look around.
The second time was around a year ago now, I was taking the kids to Dreamworld for an outing, and Jono decided he didn't want to go. We got into the car, drove all the way there, and he started to panic once we arrived. He unbuckled his seatbelt, threw himself on the floor and started crying... I couldn't get him out of the car, and he just could not move he was so terrified... I still don't know why as we had been there a few times before. To save the other kids being too upset we decided to go to Logan Hyperdome and play in the playground there for a while. They were all happy with that and went into the playground ok.
I had forgotten my phone so said to the kids I'll be back in a second and went to the public phone box to call Rob to let him know where we were so he wouldn't be concerned. In the meantime someone had opened the gate to the kids play area and Jono got out to come and find me... I didn't know he had done this until I got back (2 minutes.. ish). After I realised he wasn't there we searched the local area, got a shop owner to contact the shopping centre guards and fell apart in tears. Daniel said 'well, I guess that's it for Jono' (or something along those lines) and I said 'No, we are not leaving until we find him'. Although in my mind I was thinking 'anyone' could have grabbed him and he could be gone. I was terrified. The guards said they found a boy fitting my description screaming a few shops down the way, we took off and found him, curled up in a lady's lap crying his eyes out.
He simply didn't realise I was at the phone booth and came to find me, at least he knew he was seperated this time.
The third time was last week. We went to the local shops and went to the post office, the electronics store, the toilet, the op-shop and then groceries.. we also had to look at the barber's pole that lit up, the interior water features and the chinese shop. After getting a trolley full of groceries, I decided I would buy that shirt form the op-shop and we went back there. I picked up the shirt, parked my trolley and when to the counter with cash in my hand. By the time I got to the counter, he was gone. I finished as quickly as I could (1 minute) and came back outside to look for him. I recovered my steps in every shop we had been too, and couldn't locate him. With a trolley full of groceries it felt like very slow going to each of the shops to see if I could see him. I was calling his name constantly and got Daniel to check the toilets for him as well... after around 10 minutes my heart was in my throat and I didn't know what to do or where else to look.
I went back up the alley one more time, turned around and saw him outside the shop we were last at... walking along, unconcerned because he knew where we were when he left us, and seemed to think we would be there when he got back. I 'think' he took himself to the toilet, but just didn't respond when Daniel called for him.
So what to do next time? I'm kidding myself if I don't think it will happen again. I had a friend suggest we make a business card for Jono with his name, and my phone number... and he keeps it in his wallet and brings it to the shops or whenever we go out. Great idea, and one I think I'll implement, with a little training this could be a great help and something that can put my mind a little more at ease.
Thursday, March 19, 2009
Sunday, March 8, 2009
The Affects on a Parent
30 Kilos... 70 Pounds...
Wow, it's startling when I make it so simple, what affect has Autism had on my life... besides the emotional turmoil, the lack of 'normalcy', the impact on our lifestyle, the types of jobs we are able to choose, and so on, it's also meant 30 kilos.... of extra weight.
It's taken 5 years to put those 30 kilos on, and a heck of a lot of it was comfort eating. Rob and had been active members and leaders of a church group for 15 years, the majority of it in Sydney, after Jonathan was born we wanted to come back home to be with our families, and continued on with the same church group for a while, but after we got a diagnosis (when he was 2), we felt a huge lack of support from many areas in our lives (whether the lack of support was real or imagined or just the effects of the overwhelming emotion we were feeling or a coping mechanism... I don't really know), and we shut down, for 5 years.
In that 5 years we didn't go out very much, it was far too difficult to go to a park unless it had fences all the way around the play area so we didn't have to be on our feet and constantly running after this child who had no comprehension of boundaries and danger. We couldn't talk with people easily as we 'always' had to have one eye on Jono, and the other eye on the other two. At the church we went to, the building was on a main road and we 'almost' had Jono get hit by a car one time as he raced towards the 4 lanes of traffic one time when he slipped away from us. You can read a bit about that time here.
In that 5 years we started playing online computer games, we had a way to connect with some people, we had fun together, and we had an 'escape', we enjoyed the escape a lot, perhaps too much and would often be online all day and then all night... we also stayed up very late and ate junk food... lots of junk food.
In that 5 years cleaning the house went completely out the window, if everyone got fed from clean plates I was happy with that, if they had clean clothes that was ok and if their bed sheets got washed every now and then, that would do. The floors were a constant mess... Jono had no concept of the rubbish bin or tidying up, and I was too overwhelmed to teach him, so he would eat something and then drop scraps on the floor.
In that 5 years I put on 30 kilos.
I have to say that today, looking at all this its a foreign world, we are still working on things from this time, but a lot of it has changed.
Around a year ago the 'fog' started to lift, I got a job with my husbands company painting an office building, 2 stories, every wall, every cubicle, all by myself. I got to choose the colours, I created something lovely out of something disgusting (and I'm being serious, it had been graffiti'd and left in disarray before they took the building over), I could see the changes happening in front of my eyes, and I lost 5 kilos (around 10 pounds). It was the start.
As last year progressed we gave up that online game and started spending more time with real people, I got a job as a graphic designer, during school hours, and joined weight watchers. I was starting to have communities again... and over the rest of the year lost another 5 kilos.
This year so far, is going great and the Affects of Autism are not as overwhelming as what they once were. I've allready lost a few more kilos, and am aiming to lose the other 20 within the next 2 years. We are planning on putting in a pool in the yard, and are getting more focused on health, nutrition and exercise. I'm also changing standards for the house, Today I can even see Jono's floor!
We are getting there, we've been in a pit, a large, stinky, gooey isolating pit, partly due to our own coping mechanisms, but coming out the other side of it I can also see that we have learned, changed and grown...
... all of us.
Wow, it's startling when I make it so simple, what affect has Autism had on my life... besides the emotional turmoil, the lack of 'normalcy', the impact on our lifestyle, the types of jobs we are able to choose, and so on, it's also meant 30 kilos.... of extra weight.
It's taken 5 years to put those 30 kilos on, and a heck of a lot of it was comfort eating. Rob and had been active members and leaders of a church group for 15 years, the majority of it in Sydney, after Jonathan was born we wanted to come back home to be with our families, and continued on with the same church group for a while, but after we got a diagnosis (when he was 2), we felt a huge lack of support from many areas in our lives (whether the lack of support was real or imagined or just the effects of the overwhelming emotion we were feeling or a coping mechanism... I don't really know), and we shut down, for 5 years.
In that 5 years we didn't go out very much, it was far too difficult to go to a park unless it had fences all the way around the play area so we didn't have to be on our feet and constantly running after this child who had no comprehension of boundaries and danger. We couldn't talk with people easily as we 'always' had to have one eye on Jono, and the other eye on the other two. At the church we went to, the building was on a main road and we 'almost' had Jono get hit by a car one time as he raced towards the 4 lanes of traffic one time when he slipped away from us. You can read a bit about that time here.
In that 5 years we started playing online computer games, we had a way to connect with some people, we had fun together, and we had an 'escape', we enjoyed the escape a lot, perhaps too much and would often be online all day and then all night... we also stayed up very late and ate junk food... lots of junk food.
In that 5 years cleaning the house went completely out the window, if everyone got fed from clean plates I was happy with that, if they had clean clothes that was ok and if their bed sheets got washed every now and then, that would do. The floors were a constant mess... Jono had no concept of the rubbish bin or tidying up, and I was too overwhelmed to teach him, so he would eat something and then drop scraps on the floor.
In that 5 years I put on 30 kilos.
I have to say that today, looking at all this its a foreign world, we are still working on things from this time, but a lot of it has changed.
Around a year ago the 'fog' started to lift, I got a job with my husbands company painting an office building, 2 stories, every wall, every cubicle, all by myself. I got to choose the colours, I created something lovely out of something disgusting (and I'm being serious, it had been graffiti'd and left in disarray before they took the building over), I could see the changes happening in front of my eyes, and I lost 5 kilos (around 10 pounds). It was the start.
As last year progressed we gave up that online game and started spending more time with real people, I got a job as a graphic designer, during school hours, and joined weight watchers. I was starting to have communities again... and over the rest of the year lost another 5 kilos.
This year so far, is going great and the Affects of Autism are not as overwhelming as what they once were. I've allready lost a few more kilos, and am aiming to lose the other 20 within the next 2 years. We are planning on putting in a pool in the yard, and are getting more focused on health, nutrition and exercise. I'm also changing standards for the house, Today I can even see Jono's floor!
We are getting there, we've been in a pit, a large, stinky, gooey isolating pit, partly due to our own coping mechanisms, but coming out the other side of it I can also see that we have learned, changed and grown...
... all of us.
Thursday, March 5, 2009
Dog Poo is Funny!
Like real funny not just a small smirk out of the side of your mouth, or even a giggle, but the full belly laugh followed by spurts of giggles kind of funny... especially when the dog poo has been found inside the house.
First let me explain, we have 2 dogs, both are Jack Russel Terrier Crosses, and both are outside dogs. At least that's what we tell them around 15-20 times a day, every day... I'm starting to think the dogs are smarter than what we give them credit for.
Sometimes we see a dog poke it's head in the door, looking at us with its head crocked on the side as if to ask "How about now?" This quickly gets followed with an "OUTSIDE" by any family member. Other times we turn around to see the scuttle of dog claws and a tail as they finish running through the house from the front door to the back door, and then other times we have our daughter wake up crying saying their are pigs in her room and we find a dog under her bed... but that's another story.
So these outside dogs have left little presents for us from time to time, and usually in the middle of the hall, this week they left one in the middle of the lounge room floor as we were getting ready to go to school one morning. Jono was having issues with his School shirt and wasn't exactly watching were he was going, I had just seen the Poo and hadn't had the chance to clean it up yet and called out to Jono, "Watch out, Dog Poo, Yucky!". Magically the school shirt was no longer and issue and the "Yucky" was hilarious, the tears that had been their moments before had gone replaced by giggles, then all out laughter.
I had a new weapon!!
Now the reason that Dog Poo inside the house is funny, is simply that it is not meant to be there. One thing that I find is reasonably accurate of people with Autism is that they have a different way of viewing the world. If someone trips and falls down when they were walking, that's funny... not because they fell (and especially not if they hurt themselves) but because it's not meant to happen, people are not supposed to fall over, so when it happens, it's a funny thing to see. The same with dog poo inside the house, it's simply not meant to be there.
For the rest of the week, whenever he was getting sad or overwhelmed about something I would talk about the dog poo, and he would stop the tears, buck up and giggle... and then a few days later a bird did a poo on my car...
First let me explain, we have 2 dogs, both are Jack Russel Terrier Crosses, and both are outside dogs. At least that's what we tell them around 15-20 times a day, every day... I'm starting to think the dogs are smarter than what we give them credit for.
Sometimes we see a dog poke it's head in the door, looking at us with its head crocked on the side as if to ask "How about now?" This quickly gets followed with an "OUTSIDE" by any family member. Other times we turn around to see the scuttle of dog claws and a tail as they finish running through the house from the front door to the back door, and then other times we have our daughter wake up crying saying their are pigs in her room and we find a dog under her bed... but that's another story.
So these outside dogs have left little presents for us from time to time, and usually in the middle of the hall, this week they left one in the middle of the lounge room floor as we were getting ready to go to school one morning. Jono was having issues with his School shirt and wasn't exactly watching were he was going, I had just seen the Poo and hadn't had the chance to clean it up yet and called out to Jono, "Watch out, Dog Poo, Yucky!". Magically the school shirt was no longer and issue and the "Yucky" was hilarious, the tears that had been their moments before had gone replaced by giggles, then all out laughter.
I had a new weapon!!
Now the reason that Dog Poo inside the house is funny, is simply that it is not meant to be there. One thing that I find is reasonably accurate of people with Autism is that they have a different way of viewing the world. If someone trips and falls down when they were walking, that's funny... not because they fell (and especially not if they hurt themselves) but because it's not meant to happen, people are not supposed to fall over, so when it happens, it's a funny thing to see. The same with dog poo inside the house, it's simply not meant to be there.
For the rest of the week, whenever he was getting sad or overwhelmed about something I would talk about the dog poo, and he would stop the tears, buck up and giggle... and then a few days later a bird did a poo on my car...
Saturday, February 28, 2009
School shirt ON!
So we've been having a battle (again) with the school shirt. It is not the most comfortable fabric, and I've been letting him go to school with another shirt and they have been dressing him there. Last year that was ok, but next year he will be in what they term as middle school and... He just needs to move past it.
So we've had lots of 'no want it' and tears (from both of us) and he's been throwing the shirt away. It's been in the school rubbish bin, over the neighbours fence, out the car window and so forth. We compromised for a while and had him in a regular shirt with the school shirt on top and that was kind of ok until he moved classrooms and there was no air con, in Aussie summers 2 shirts+no air = sleepy child. So he's found it harder to settle in and be able to concentrate. We went to just the school shirt for a while, but that also had issues. Then his teacher suggested we get him singlets. Brilliant!
He chose what singlets to get, and loooves them, he spent the first week showing them off to his teachers (and everyone else) and is happy to put his school shirt on. Such a small thing can make such a big difference.
It reminds me of the advice I give to new parents. Whatever you do regularly, becomes a habit and what they expect, be it good or bad, if you're happy with what you are doing, continue, if not, change it early!
*Takes own advice to heart*
So we've had lots of 'no want it' and tears (from both of us) and he's been throwing the shirt away. It's been in the school rubbish bin, over the neighbours fence, out the car window and so forth. We compromised for a while and had him in a regular shirt with the school shirt on top and that was kind of ok until he moved classrooms and there was no air con, in Aussie summers 2 shirts+no air = sleepy child. So he's found it harder to settle in and be able to concentrate. We went to just the school shirt for a while, but that also had issues. Then his teacher suggested we get him singlets. Brilliant!
He chose what singlets to get, and loooves them, he spent the first week showing them off to his teachers (and everyone else) and is happy to put his school shirt on. Such a small thing can make such a big difference.
It reminds me of the advice I give to new parents. Whatever you do regularly, becomes a habit and what they expect, be it good or bad, if you're happy with what you are doing, continue, if not, change it early!
*Takes own advice to heart*
Monday, February 16, 2009
Today, I feel it
This weekend has been fairly big in a few ways, and today's not going that great so far... Bedsides the fact that it is Monday. We are working on Jono wearing his proper school shirt, and it was going ok last week, but today he's completely against it.
Back to the weekend though. On Friday I took the kids all shopping to get groceries at Coles to help the bushfire appeal. We walked past a games shop and Jono just wanted to stay and watch, I let him for a little while, then we needed to get going. I cajoled, demanded, dragged, insisted and ended up smacking him to try and get him moving past the shop. He dropped to the floor in tears, I realized we weren't getting anywhere so I stopped and hugged him till he calmed down enough for us to be able to move. 10 minutes later we were in Coles.
While there all three kids were being mischievous as the lines were so long and some old guy who doesn't know us from a bar of soap mutters under his breath, but loud enough for me to hear, something about smacking children. Thankyou random stranger for the input. Grrrrrr
Then we went to a new church on Sunday, and a few people 'noticed' the noise emanating from our corner, not pushy or nosy, and not many of them but on top of Friday, I felt it.
I started to think, we will never be 'accepted' as a family, we will always be people who are different. As a child I strove to be different, but on my terms... Being goofy, funny, silly... This is not on my terms and I don't like that.
So today, He can't wear the school shirt, I don't know why, He can't tell us what's wrong with it, and is totally overwhelmed about the whole idea of wearing it... Both of us.
Today, I'm feeling it.
Back to the weekend though. On Friday I took the kids all shopping to get groceries at Coles to help the bushfire appeal. We walked past a games shop and Jono just wanted to stay and watch, I let him for a little while, then we needed to get going. I cajoled, demanded, dragged, insisted and ended up smacking him to try and get him moving past the shop. He dropped to the floor in tears, I realized we weren't getting anywhere so I stopped and hugged him till he calmed down enough for us to be able to move. 10 minutes later we were in Coles.
While there all three kids were being mischievous as the lines were so long and some old guy who doesn't know us from a bar of soap mutters under his breath, but loud enough for me to hear, something about smacking children. Thankyou random stranger for the input. Grrrrrr
Then we went to a new church on Sunday, and a few people 'noticed' the noise emanating from our corner, not pushy or nosy, and not many of them but on top of Friday, I felt it.
I started to think, we will never be 'accepted' as a family, we will always be people who are different. As a child I strove to be different, but on my terms... Being goofy, funny, silly... This is not on my terms and I don't like that.
So today, He can't wear the school shirt, I don't know why, He can't tell us what's wrong with it, and is totally overwhelmed about the whole idea of wearing it... Both of us.
Today, I'm feeling it.
Wednesday, February 4, 2009
Wait wait me coming drive!
Finally getting back into routine and last night Daniel and I headed out for ice skating. It's been around 3-4 months since we have been and we were looking forward to it. As we got dresssed and got the socks and shoes, Jono saw us and decided he wanted to come.
He went and got his shoes on then came into the front yard. After we came out the front he put his hand up to make us stand still then started pleading to come with us.
He HATES ice skating, or he did last time we tried, the room, the noise, the cold, it's all too much! So I had no problems saying no... But he didn't see it like I did. Rob came out the front and sat with him and tried to talk about him and Daddy would do something together.
So Daniel and I head out the gate to the car, and just after we open the doors we here him start crying... nothing too major, but he's obviously sad. We head off and have a great time, pretty much wore ourselves out. When we get back Rob told us it took Jono am hour to calm down, Rob hasn't seen him like that in a very, very long time!
In fact those kind of meltdowns happen only around once every 2-3 months now. Well do I remember the days when meltdowns were pretty much daily. It's kind of odd measuring progress by how often he gets upset, but I'm glad to see the progress happening. :)
He went and got his shoes on then came into the front yard. After we came out the front he put his hand up to make us stand still then started pleading to come with us.
He HATES ice skating, or he did last time we tried, the room, the noise, the cold, it's all too much! So I had no problems saying no... But he didn't see it like I did. Rob came out the front and sat with him and tried to talk about him and Daddy would do something together.
So Daniel and I head out the gate to the car, and just after we open the doors we here him start crying... nothing too major, but he's obviously sad. We head off and have a great time, pretty much wore ourselves out. When we get back Rob told us it took Jono am hour to calm down, Rob hasn't seen him like that in a very, very long time!
In fact those kind of meltdowns happen only around once every 2-3 months now. Well do I remember the days when meltdowns were pretty much daily. It's kind of odd measuring progress by how often he gets upset, but I'm glad to see the progress happening. :)
Monday, February 2, 2009
When No, Means No!!.. and Yes.. and...
Lately Jono is expressing himself with the word No. He is using it all all kinds of situations.
Are you hungry? No! Put some food in front of him and he will eat
Do you want to go for a drive? No! Tell him to get his shoes on and get ready and he gets into the car happily.
Pass me the drink/remote/phone..etc. No! Then he will hand it over.
I 'think' he is just testing boundaries a little, but it's really hard to tell.. it's hard enough to tell with the other two! Ah well, as long as he eats, wears clothes in public and gets in the car when we need to get going, it's all good.
Are you hungry? No! Put some food in front of him and he will eat
Do you want to go for a drive? No! Tell him to get his shoes on and get ready and he gets into the car happily.
Pass me the drink/remote/phone..etc. No! Then he will hand it over.
I 'think' he is just testing boundaries a little, but it's really hard to tell.. it's hard enough to tell with the other two! Ah well, as long as he eats, wears clothes in public and gets in the car when we need to get going, it's all good.
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