*puts one hand in the air*
That would be me.
*put up other hand*
And my husband.
It's been an interesting few weeks, we've been delving into 'causes' of our weight gain, and looking at our lives and the things that have caused our bodies to gain weight. A lot of the recent weight changes is just 'coping' with the changes in our lives due to have a child with special needs, and the personal guilt, anger, disappointment, resentment and so on through to the point of being 'ok' with it and continuing on with living in a good frame of mind rather than a guilty one.
So with all of that we have been looking at Daniel and what 'could' have caused his weight gain. We went back through the family photos and discovered that when he was in grade one, he was skinny as.. then from around the middle of grade two onwards he started to bulk up.
When we looked at the photos we realised a catalyst for him in his life has been his grade 2 teacher... she used to yell at the students and he would come home around once every 6weeks saying that she was shouting. At the time we didn't think a great deal of it, and tried to tell him perhaps the kids where being naughty. Wether it was that simple or not, it had a massive effect on him. So much so that when he started grade 3 he was so amazingly scared of going to school, we talked it through and we thought it was dealt with and we all moved on...
This year, with looking back at his life in photos, and talking to him about it we realised how much bigger this was for him. Then Sarah started saying that her teacher yelled at the kids and they would all get scared. Mommy Bear awoke at this point raised her head and decided to take it straight to the authorities... the school principal.
The night before I met with the principal I was talking with my Mother-in-Law about life and talked about this latest realisation we had. In discussion she talked about the chances are that Jono has also had a large impact on Daniel and told me about the times Daniel wasn't coping and would clench his fists in anger about things that jono was doing... At the time I was not able to see what was happening with him and I wasn't even aware of this going on. I've since seen it and talked with him about it.
So... in the principal's office we discussed the grade 2 teacher, the challenges of having a special needs child for us as a family and the difficulities that could be there for Daniel. She said that the school was going to have a counsellor once a week to the school to help children with things like this and would I like Daniel in the program. Half of me said yes, and half of me said 'what am I doing?'. Regardless, I booked him in. The counsellor was due in 2 days after I saw the principal... talk abut timing.
That night at dinner we talked with Daniel that he could have this person to talk to about 'anything', about his teachers, about his family life, about Mummy getting sad, about Daddy getting frustrated, about him getting frustrated, everything was open for him to talk about, and that this person can give him ideas and suggestions to help him out both at school and at home.
He was really interested to understand all about the counsellor and wanted to know everything I talked about with the principal. A few days later he had his first session. When he got home we asked him how it all went. He enjoyed it and was really happy to go, so much so that he asked to go again the next day. I don't know how much he really got to discuss that first day, or if he's just excited to be missing out on school, but I'm happy he's happy with it, and that he has an outlet and an option for him.
We all need support, and sometimes it turns up in unexpected ways.
A Blog from a parent of an Autistic child. The joyful ups, the disenheartening downs, and the days where it's just all too real.
Friday, March 27, 2009
Tuesday, March 24, 2009
Daddy Day
Over the past few weeks we have been having a special outing for Daddy and one of the kids. Three weeks ago it was Daniel and Daddy going to the movies and lunch. Two weeks ago it was Sarah and Daddy going skirt shopping with iced chocolate and muffins after. Last week was Jono's turn.
I'd come up with the idea of taking Jono to a games arcade at the local shopping centre as we had been to one in the city and he really enjoyed himself. Rob was quite excited about it and spoke with Jono about it quite a few times in the week leading up to the day, Jono seemed rather excited about it as well. On the morning as they headed out they both seemed quite happy to be going. I bundled up the other two and a tag-along friend and went iceskating.
After we all got home it turns out Jono didn't really have a good time at all, he spent a fair amount of time in the arcade with his hands on his ears and crying (which he's never done when we all went together in the city). Rob took him to a Macca's and then for a wander around the shops, but it just didn't quite turn out the way he'd imagined it to.
They where ok when they got home, and Jono was happy enough (he really is a very happy boy) but Rob was quite downhearted about how it all turned out and we talked a bit about expectations and reality and adjusting them as need be. He didn't do anything wrong, it just didn't quite go to plan... and that's ok.
I distinctly remember the times for myself where I've had an outing or a plan in mind of what I want to get done with the kids because it's all I have energy for, or because I think they will enjoy it if they just give it a try.. or whatever reason, but having it go wrong, and usually because Jono isnt coping (or more to the point I'm not coping with Jono not coping). I've had to learnt to adjust, adjust my own attitude, adjust the plan, adjust the schedule, decide to not stress if we are late or have to leave early, and above all, to not blame or throw guilt around on anyone... especially myself.
*self hugs*
*and hugs for you too, coz there are days we can all use a hug*
I'd come up with the idea of taking Jono to a games arcade at the local shopping centre as we had been to one in the city and he really enjoyed himself. Rob was quite excited about it and spoke with Jono about it quite a few times in the week leading up to the day, Jono seemed rather excited about it as well. On the morning as they headed out they both seemed quite happy to be going. I bundled up the other two and a tag-along friend and went iceskating.
After we all got home it turns out Jono didn't really have a good time at all, he spent a fair amount of time in the arcade with his hands on his ears and crying (which he's never done when we all went together in the city). Rob took him to a Macca's and then for a wander around the shops, but it just didn't quite turn out the way he'd imagined it to.
They where ok when they got home, and Jono was happy enough (he really is a very happy boy) but Rob was quite downhearted about how it all turned out and we talked a bit about expectations and reality and adjusting them as need be. He didn't do anything wrong, it just didn't quite go to plan... and that's ok.
I distinctly remember the times for myself where I've had an outing or a plan in mind of what I want to get done with the kids because it's all I have energy for, or because I think they will enjoy it if they just give it a try.. or whatever reason, but having it go wrong, and usually because Jono isnt coping (or more to the point I'm not coping with Jono not coping). I've had to learnt to adjust, adjust my own attitude, adjust the plan, adjust the schedule, decide to not stress if we are late or have to leave early, and above all, to not blame or throw guilt around on anyone... especially myself.
*self hugs*
*and hugs for you too, coz there are days we can all use a hug*
Thursday, March 19, 2009
How do you find someone who can't respond?
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.
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.
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...
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