Its been an interesting start to school this year.
Sarah's first year, and she is thrilled to pieces, Daniel's in grade 4 and 'over' school. Jono in grade 2 at special school, and it's a little different - classes, teachers etc, but still the same - same bus, same drivers, same assembly to start the school day.
In his first week - 2 days were great, then 2 days of tears... we 'think' he may have been tired. His second week was more settled, and this week he's going great.
The extra special thing about this year, he is actually looking at me when the bus pulls out, instead of in the air or at the trees. I've been able to wave goodbye and blow him kisses, and he gives me eye contact, and even blew a kiss back and waved.
I tell you, warm fuzzies all over the first day he did that :)
Today is his swimming day at school, and I got him to tell him, he gave me eye contact and listened well, and I told him - Today Swimming day, at School. So he reached out and gave me the biggest hug. I really wasn't expecting that kind of reaction, but I think it was his way of saying thank you.
He's an awesome boy.
Tuesday, February 12, 2008
We are normal!!
Ok, odd title, especially as I haven't written for a while - life, school holidays (3 kids at home for 6 weeks *pulls hair out*), etc.
I've had a few people at our house after the kids have gotten back to school, and they have commented on the general lack or order that is going on.
Our house is currently fairly trashed, I was sweeping up every day, some days multiple times when the kids were home, depending on how many things got thrown on the floor. It may have been food that felt wrong in the mouth, milk that looks good when you pour it on the floor, a hand cream that makes a great paste to write on the walls with, a glass cup that makes such a great noise when you smash it, that its worthwhile to grab another one and smash it before mum catches you.
After the kids have gotten back to school I've made myself a task set of things to get in order, but I'm tackling one at a time, with no time pressure, I'm expecting to take 1 term to get it back in order. The kitchen is generally clean, and hygienic, though the dishes may sit for a day before they get washed the floor is generally tidy enough to have some room to walk on, but some rooms are just 'ewwww', but I refuse to stress about them.
I tackled Jono's room, and gathered the 'things' in his bed, then realized it was taking such a long time to pick up the pieces of lego, puzzles, toys, broken chalk and textas in his bed that it would be easier to simply sweep his bed clean. As I was doing that I thought to my self - yes, you know you are a mother of an Autistic child when you are actually sweeping their bed to clean it. I got a lot of toys and books away, tidied the floor, remade the bed, and said - that will do.
When a child takes 20 minuted to make 2 hours of cleaning, and if you have a shower you know you'll need to come out and get the broom for the next mess, coz your back was turned you reach a point where the mess in and of itself gets ignored, and left for a day when it gets tackled wholesale.
Currently, he has also drawn on his bed, and on his bedroom walls with textas... I'll clean it off, later.
So.. why are we normal?
I saw an article in a magazine by a family with 6 autistic kids, and the biggest thing that got me besides the fact they get glared at in public, run after children with no sense of boundaries, who can't sit still to eat, eat of strangers tables, hum and scream for no apparent reason, and bolt for the door if daddy isn't looking, all of which I all related to and have experienced personally.. but a picture of one of the kids bedrooms. They have no sheets on their bed, the walls where covered in scribbles, paint stripped away in patches, no curtains, and chains and locks on cupboards and doors around the house.
This is me.
I face this daily, and people have no idea, this picture was me, my family, and the things we face, but in an exaggerated fashion to where we are at currently, having only 1 child with autism.
I admire this family greatly, the simple fact they are still married with everything they have going on speaks volumes about their strength of character.
Anyways here's some links to them and their stories.. and I think I'll be buying a few of their t-shirts :)
http://www.deseretnews.com/dn/view/0,1249,660226195,00.html - scroll through the pictures on the right.
http://www.autismbites.com/index.html - their home site.
I've had a few people at our house after the kids have gotten back to school, and they have commented on the general lack or order that is going on.
Our house is currently fairly trashed, I was sweeping up every day, some days multiple times when the kids were home, depending on how many things got thrown on the floor. It may have been food that felt wrong in the mouth, milk that looks good when you pour it on the floor, a hand cream that makes a great paste to write on the walls with, a glass cup that makes such a great noise when you smash it, that its worthwhile to grab another one and smash it before mum catches you.
After the kids have gotten back to school I've made myself a task set of things to get in order, but I'm tackling one at a time, with no time pressure, I'm expecting to take 1 term to get it back in order. The kitchen is generally clean, and hygienic, though the dishes may sit for a day before they get washed the floor is generally tidy enough to have some room to walk on, but some rooms are just 'ewwww', but I refuse to stress about them.
I tackled Jono's room, and gathered the 'things' in his bed, then realized it was taking such a long time to pick up the pieces of lego, puzzles, toys, broken chalk and textas in his bed that it would be easier to simply sweep his bed clean. As I was doing that I thought to my self - yes, you know you are a mother of an Autistic child when you are actually sweeping their bed to clean it. I got a lot of toys and books away, tidied the floor, remade the bed, and said - that will do.
When a child takes 20 minuted to make 2 hours of cleaning, and if you have a shower you know you'll need to come out and get the broom for the next mess, coz your back was turned you reach a point where the mess in and of itself gets ignored, and left for a day when it gets tackled wholesale.
Currently, he has also drawn on his bed, and on his bedroom walls with textas... I'll clean it off, later.
So.. why are we normal?
I saw an article in a magazine by a family with 6 autistic kids, and the biggest thing that got me besides the fact they get glared at in public, run after children with no sense of boundaries, who can't sit still to eat, eat of strangers tables, hum and scream for no apparent reason, and bolt for the door if daddy isn't looking, all of which I all related to and have experienced personally.. but a picture of one of the kids bedrooms. They have no sheets on their bed, the walls where covered in scribbles, paint stripped away in patches, no curtains, and chains and locks on cupboards and doors around the house.
This is me.
I face this daily, and people have no idea, this picture was me, my family, and the things we face, but in an exaggerated fashion to where we are at currently, having only 1 child with autism.
I admire this family greatly, the simple fact they are still married with everything they have going on speaks volumes about their strength of character.
Anyways here's some links to them and their stories.. and I think I'll be buying a few of their t-shirts :)
http://www.deseretnews.com/dn/view/0,1249,660226195,00.html - scroll through the pictures on the right.
http://www.autismbites.com/index.html - their home site.
Thursday, August 23, 2007
I am the Beanbag KING!!
Well, the other night I took my oldest to Iceskating (which I get on the ice with him) and my hubby decided to read some of Harry Potter Book 7, which we have both enjoyed. We put Sarah and Jono to bed before we leave, about 7:30pm and Sarah's head touches the pillow and she's gone (as usual) but Jono settles into his prancing before sleep routine.
I get back around 9pm, and get Daniel to get ready for bed and check on Jono... I asked Rob if he had checked on him lately and Rob said not for about 20 minutes... and as I had just looked in his room, I asked him to come and check with me.
Jono has a bean bag in his room, its the standard shaped one, he's used it as a blanket, slept on it, read on it, and just basically enjoyed it. Tonight, there are beans aaaaalllllllll over the floor in his room, the beanbag is not actually empty tho, it still had at least 3/4 of the beans in it... and a child.
Jono had somehow opened the zipper, climbed in, somehow managed to close the zipper behind him and was standing upright inside the bag... still with lots of beans in it. He thought this was quite hilarious and was full of giggles... we thought he could choke or suffocate. We tipped him upside down, unzipped the bag and put a sweaty boy into the shower. We swept up as best we could, then took the beanbag out of his room. It hasn't gone back in.
The concept of danger seems to be so limited at times and I don't know if its purely a developmental thing or an Autistic thing. It was quite amusing to see a child standing INSIDE a beanbag giggling to himself... and no I didn't take pictures of that one as we were more concerned for his safety, though looking back it would have been funny too :)
I get back around 9pm, and get Daniel to get ready for bed and check on Jono... I asked Rob if he had checked on him lately and Rob said not for about 20 minutes... and as I had just looked in his room, I asked him to come and check with me.
Jono has a bean bag in his room, its the standard shaped one, he's used it as a blanket, slept on it, read on it, and just basically enjoyed it. Tonight, there are beans aaaaalllllllll over the floor in his room, the beanbag is not actually empty tho, it still had at least 3/4 of the beans in it... and a child.
Jono had somehow opened the zipper, climbed in, somehow managed to close the zipper behind him and was standing upright inside the bag... still with lots of beans in it. He thought this was quite hilarious and was full of giggles... we thought he could choke or suffocate. We tipped him upside down, unzipped the bag and put a sweaty boy into the shower. We swept up as best we could, then took the beanbag out of his room. It hasn't gone back in.
The concept of danger seems to be so limited at times and I don't know if its purely a developmental thing or an Autistic thing. It was quite amusing to see a child standing INSIDE a beanbag giggling to himself... and no I didn't take pictures of that one as we were more concerned for his safety, though looking back it would have been funny too :)
Tuesday, July 31, 2007
As early as 3 months...
I've been reading a lot of forums from other families with autistic kids lately and a common thing is the 18 month old needles... that their kids were bright, blooming and blossoming, learning to talk, socially interacting, some even have video of it, before the needles and then afterwards, they are... not. (I even remember Jono waving goodbye to people of his own accord at 10 months.. I also remember at 14 months seeing he was 'different')
Now I've been firm in my individual belief that it's genetic, whether the needles accelerate the traits or not.. I don't know; but the other night I was astounded. We were as a family sitting and watching some videos of the kids - it started as me and Sarah watching a bit of Mummy and Daddy's wedding, and then we all came to watch.
In amongst the videos was some footage of Jono at 3 months old in a bouncer, I'm clicking my fingers and calling his name and trying to get him to respond so I can film him - as all parents do with kids that age I am sure :)... and there is a moment, just before he caught the camera and smiled the biggest cheesiest grin.
This moment, and it's really brief, is of him looking from the corner of his eyes. He does it a lot these days, it's as though he is looking at you safely.. if he doesn't look at you or the object directly, then you don't know he is looking at you, and he can decide if it's safe/he wants to get involved... and he still takes everything in.
So I see this moment, of his corner looking at the camera, then he lets out this big grin... at the age of 3 MONTHS! Corner looking (for want of another term) from that age! I didn't notice it before, and sometimes you only see things in hindsight, but this helps me so much with the idea that the 18 month needles had something to do with it.. because from this, I really don't think they do and it helps me to be settled in the idea that it's genetic... and it really is completely beyond my control.
Now I've been firm in my individual belief that it's genetic, whether the needles accelerate the traits or not.. I don't know; but the other night I was astounded. We were as a family sitting and watching some videos of the kids - it started as me and Sarah watching a bit of Mummy and Daddy's wedding, and then we all came to watch.
In amongst the videos was some footage of Jono at 3 months old in a bouncer, I'm clicking my fingers and calling his name and trying to get him to respond so I can film him - as all parents do with kids that age I am sure :)... and there is a moment, just before he caught the camera and smiled the biggest cheesiest grin.
This moment, and it's really brief, is of him looking from the corner of his eyes. He does it a lot these days, it's as though he is looking at you safely.. if he doesn't look at you or the object directly, then you don't know he is looking at you, and he can decide if it's safe/he wants to get involved... and he still takes everything in.
So I see this moment, of his corner looking at the camera, then he lets out this big grin... at the age of 3 MONTHS! Corner looking (for want of another term) from that age! I didn't notice it before, and sometimes you only see things in hindsight, but this helps me so much with the idea that the 18 month needles had something to do with it.. because from this, I really don't think they do and it helps me to be settled in the idea that it's genetic... and it really is completely beyond my control.
Christmas in July
The other night, we were in the kitchen and the kids we either with us or in the computer room, Jono was on the computer he prefers and just playing some game.. and we heard singing, a high clear voice in perfect tune, and clear pronunciation of every word... "Jingle Bells Jingle Bells, Jingle all the way, and then it turned to mumbling... but still in tune, coz he didn't know the next words.
We walked in and saw him still singing, but gosh darn it, no matter what we tried we couldn't get him to do it again. This is the new record for the longest amount of words he can string together.. and it was crystal clear, it was Christmas for us in many ways that day :)
We walked in and saw him still singing, but gosh darn it, no matter what we tried we couldn't get him to do it again. This is the new record for the longest amount of words he can string together.. and it was crystal clear, it was Christmas for us in many ways that day :)
Saturday, July 21, 2007
Amazing outing
Like, pick my jaw up off the floor kind of amazing.
I took Jono and Sarah to the shops today.. I usually don't like going on a Saturday at all because of how busy it gets, and usually try and take only one of the kids.. so today I had two. Usually as well when we take Jono we 'lock' him in the seat on the trolley so we aren't chasing him down aisles and wondering where the heck he is the minute we turn our back.
Today, he sat in the seat for a few minutes, then decided he wanted to get out... I already had the fruit and wasn't planning a big shop so thought, ok... we'll walk and if it's causing too much stress, we can leave.. with or without paying for them, I can always come back later if need be.
He got out, and was simply amazing.. he walked near me (around 3 steps away) almost the entire time, and on the odd occasion where he went further away, he came back immediately when I called for him. Sarah was being a good lookout as well. He picked up a few extra things he wanted to have, and amazingly they were all gluten free.. but things I usually don't buy... so we got some different things this week.
The thing that amazed me.. is ... he walked. He didn't run, he didn't scream, he didn't check over his shoulder with a cheeky grin to see if I was chasing him, he just walked... happily and obediently. It was wonderful! I'm so encouraged by his behaviour and feel a lot more confident to do more with him :)
The other wonderful thing was as we left and went to the car, a lady followed us the whole way.. and I was with the: "this way, stop and wait, hold hands, watch for cars, stay close.. etc". And when we got to the car she said, " I want to congratulate you on the way you talk to your children." That was a really nice touch to a wonderful outing :)
I took Jono and Sarah to the shops today.. I usually don't like going on a Saturday at all because of how busy it gets, and usually try and take only one of the kids.. so today I had two. Usually as well when we take Jono we 'lock' him in the seat on the trolley so we aren't chasing him down aisles and wondering where the heck he is the minute we turn our back.
Today, he sat in the seat for a few minutes, then decided he wanted to get out... I already had the fruit and wasn't planning a big shop so thought, ok... we'll walk and if it's causing too much stress, we can leave.. with or without paying for them, I can always come back later if need be.
He got out, and was simply amazing.. he walked near me (around 3 steps away) almost the entire time, and on the odd occasion where he went further away, he came back immediately when I called for him. Sarah was being a good lookout as well. He picked up a few extra things he wanted to have, and amazingly they were all gluten free.. but things I usually don't buy... so we got some different things this week.
The thing that amazed me.. is ... he walked. He didn't run, he didn't scream, he didn't check over his shoulder with a cheeky grin to see if I was chasing him, he just walked... happily and obediently. It was wonderful! I'm so encouraged by his behaviour and feel a lot more confident to do more with him :)
The other wonderful thing was as we left and went to the car, a lady followed us the whole way.. and I was with the: "this way, stop and wait, hold hands, watch for cars, stay close.. etc". And when we got to the car she said, " I want to congratulate you on the way you talk to your children." That was a really nice touch to a wonderful outing :)
Wednesday, July 4, 2007
Transitioning is hard
Well, I'm at the point I'm actually labeling some of Jono's behaviors with Autistic terms. Is this another level of acceptance? Who knows.. it's just where we are at.
Yesterday on school holidays, we went out to a local park, Jono had trouble sitting in the car seat properly and preferred to be on the floor (as he had the other day). He's been horribly sick, with a vomiting flu thing and its really sapped him, and has seemed to cause some regression - he went through two days of no talking at all, and even now his babbling isn't as bright and cheery as normal.
So anyway, yesterday we went to the park, and then we wanted to go to the shops to buy something for Daniel, I spoke to Daniel about the chance we wouldn't get it today, depending on whether Jono could sit in his chair or not... How does an 8 year old take that you may ask? Well... it was difficult for him to understand he may miss out because Jono was having a 'moment'... but after he understood that I would not drive for 15 minutes to the shop we needed to go to because Jonothan's safety was more important, he seemed to be ok.
We got back in the car after the park, and I swapped their seats putting Jono directly behind me.. again he couldn't sit in his chair, he wanted to be on the floor. So I put the seatbelt across him the best I could and thought - perhaps I could bribe him, and we drove the few hundred meters to the petrol station and I got everyone an Iceblock. That worked! He sat up for that. So we had 1 boy ok with driving and in his chair properly, and one boy who was happy because we could now go to the shops. So off we went.
At the shops we got a game for Daniel, and some stuff at the chemist, then got back in the car... I bought everyone some drinks on the way out so Jono would 'have' to sit up again and he traveled fine. We got home and started baths, the idea was to have Jono in the shower while the game got installed so that the computers weren't doing something that was too odd. I got Sarah in the bath, and was upstairs when I heard Jono crying and wailing, genuinely distraught.. I came back to see he had picked up the game case and opened it, and I could not see the CD... so.. I start thinking - oh great he's tossed it somewhere, and start searching the front yard, the lounge, the stairs, the back yard.. to no avail. In the meantime Daniel is getting distressed coz the cd is gone, and Sarah is needing to get out of the bath to go to the toilet (never rains!)
So I sort Sarah, help Jono to calm, and then ring the shop... and they messed up, the disc is still there... let me express how I now feel in syllables... GRRRAAAGGGHHHHHH!!!
So, I explain to Daniel that it will have to be tomorrow, the shops close in an hour and I don't think Jono will make another trip today... and Daniel is in tears. I get Sarah through the bath.. and it's half an hour before the shops close.. so I thought.. let's try. I ask Jono if he wants to go for a drive, and he said yes... so we pack up again and head off.
The drive there was fine although busy, they gave us some money back as an apology, and were nice about it... then Jono wanted to stay in the shop, I explained it was time to go.. but he just couldn't. So I drag a screaming boy out of the shops to the car.. in the car he couldn't sit again... I coerced him, and even smacked him a few times to get him to his chair... he ended up standing at the front of his seat and I got the seatbelt on, but he just couldn't sit down. So I got some chips from a drive through and headed off... the 20 min home with a screaming, overwhelmed, scared boy clinging on to my head rest for any comfort he could obtain from holding something familiar was not the most pleasant trip of my life.
The choices are hard some days... I can't hold my other kids back from things they enjoy because one is having a hard day, but we all need to be compassionate and give room where its needed.
And after everything, he slept very well that night.
Yesterday on school holidays, we went out to a local park, Jono had trouble sitting in the car seat properly and preferred to be on the floor (as he had the other day). He's been horribly sick, with a vomiting flu thing and its really sapped him, and has seemed to cause some regression - he went through two days of no talking at all, and even now his babbling isn't as bright and cheery as normal.
So anyway, yesterday we went to the park, and then we wanted to go to the shops to buy something for Daniel, I spoke to Daniel about the chance we wouldn't get it today, depending on whether Jono could sit in his chair or not... How does an 8 year old take that you may ask? Well... it was difficult for him to understand he may miss out because Jono was having a 'moment'... but after he understood that I would not drive for 15 minutes to the shop we needed to go to because Jonothan's safety was more important, he seemed to be ok.
We got back in the car after the park, and I swapped their seats putting Jono directly behind me.. again he couldn't sit in his chair, he wanted to be on the floor. So I put the seatbelt across him the best I could and thought - perhaps I could bribe him, and we drove the few hundred meters to the petrol station and I got everyone an Iceblock. That worked! He sat up for that. So we had 1 boy ok with driving and in his chair properly, and one boy who was happy because we could now go to the shops. So off we went.
At the shops we got a game for Daniel, and some stuff at the chemist, then got back in the car... I bought everyone some drinks on the way out so Jono would 'have' to sit up again and he traveled fine. We got home and started baths, the idea was to have Jono in the shower while the game got installed so that the computers weren't doing something that was too odd. I got Sarah in the bath, and was upstairs when I heard Jono crying and wailing, genuinely distraught.. I came back to see he had picked up the game case and opened it, and I could not see the CD... so.. I start thinking - oh great he's tossed it somewhere, and start searching the front yard, the lounge, the stairs, the back yard.. to no avail. In the meantime Daniel is getting distressed coz the cd is gone, and Sarah is needing to get out of the bath to go to the toilet (never rains!)
So I sort Sarah, help Jono to calm, and then ring the shop... and they messed up, the disc is still there... let me express how I now feel in syllables... GRRRAAAGGGHHHHHH!!!
So, I explain to Daniel that it will have to be tomorrow, the shops close in an hour and I don't think Jono will make another trip today... and Daniel is in tears. I get Sarah through the bath.. and it's half an hour before the shops close.. so I thought.. let's try. I ask Jono if he wants to go for a drive, and he said yes... so we pack up again and head off.
The drive there was fine although busy, they gave us some money back as an apology, and were nice about it... then Jono wanted to stay in the shop, I explained it was time to go.. but he just couldn't. So I drag a screaming boy out of the shops to the car.. in the car he couldn't sit again... I coerced him, and even smacked him a few times to get him to his chair... he ended up standing at the front of his seat and I got the seatbelt on, but he just couldn't sit down. So I got some chips from a drive through and headed off... the 20 min home with a screaming, overwhelmed, scared boy clinging on to my head rest for any comfort he could obtain from holding something familiar was not the most pleasant trip of my life.
The choices are hard some days... I can't hold my other kids back from things they enjoy because one is having a hard day, but we all need to be compassionate and give room where its needed.
And after everything, he slept very well that night.
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