I haven't seen Bright Eyes this stressed for weeks. He has had two very bad days and is bossing and yelling and tantruming like crazy. It's not exactly fun, but it does make me realise how far things had come. Hopefully we can get back there again relatively quickly.
What's made the difference?
Possibly birthday party stress. We had two in a week (his and his sister's), plus presents, plus people in the house and lots of excitement. Also, straight after the second party, he left to spend the weekend with Grandma. He spent two nights with her and I think being on his best behaviour and away from his normal routine left him pretty tired.
I hope we can soothe him down soon. He's not fun to be with right now and the other children are feeling the tension too.
One thing I did notice while he was away was how light I was without the responsibility and guilt I usually feel when he's in the house. I seem to worry all the time that I'm not doing enough, not spending enough time with him, not giving him everything I could possibly give him to help him improve. Somehow I need to work on being more free of guilt yet still doing what I need to.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Tuesday, August 26, 2008
Tuesday, July 15, 2008
Apprentice
Bright eyes has stepped up to become quite a good little apprentice in recent weeks. I have really noticed him enjoying doing things with me. Some examples: we took the bins out together and he helped me take the clothes off the line the other day. He has been inviting us to play constantly.
It's a good change. I was getting concerned that even though we were seeing lots of good contact with our RDI program, he was still operating on his own.
Since our holiday, he has been eating normal food and doesn't seem to be suffering any adverse effects. This is also a good step forward. Of course, he still doesn't actually like anything except Vegemite sandwiches...
Our new challenge is his habit of yelping while he watches TV. It's incredibly distracting, but there is nothing we can do about it.
Wednesday, February 13, 2008
Numbers
Bright Eyes really loves his numbers. He is transfixed by clocks and anything else numerical. He can count, he can count by tens, he can count backwards.
We sat down to watch a video "Planet Earth" last night. He was calm enough but kept calling out "100" or "300" as the time went on. Suddenly I realised. Rather than watching the polar bear and her cubs frolic down the ice slope, he was watching the digital counter on the DVD player, just above the TV. Each time it reached a hundred, he called it out for us in delight.
*Sigh*
We sat down to watch a video "Planet Earth" last night. He was calm enough but kept calling out "100" or "300" as the time went on. Suddenly I realised. Rather than watching the polar bear and her cubs frolic down the ice slope, he was watching the digital counter on the DVD player, just above the TV. Each time it reached a hundred, he called it out for us in delight.
*Sigh*
Friday, June 15, 2007
Now this is really autistic
Bright Eyes loves colours.
He often names things by their colours rather than use the correct label. For example, I gave him a drink today. He took it and then called out "Yellow, yellow, yellow".
I was scratching my head. "What do you want? What is yellow?"
Then I noticed the yellow curly straw lying on the counter.
"Do you want the straw?" I asked.
"Yes! Yellow!" he said.
I said, "Can I have the straw please mum?"
He echoed, "Straw please mum?"
I didn't realise that he was so fixated on his colours until today, though. At preschool they were singing the song about who is wearing which colour. I think it goes like this: "Blue, blue, blue, who is wearing blue today? Alex is wearing blue today," etc.
Apparently he could name the colour every child in the class was wearing including those children who were out of sight and doing something else at the time!
On one level Bright Eyes is smart to be able to do that, but really it just shows how autistic he is! Sure, he can tell me what colour every one in the room is wearing, but he can't answer a question beginning with the word 'why'.
He often names things by their colours rather than use the correct label. For example, I gave him a drink today. He took it and then called out "Yellow, yellow, yellow".
I was scratching my head. "What do you want? What is yellow?"
Then I noticed the yellow curly straw lying on the counter.
"Do you want the straw?" I asked.
"Yes! Yellow!" he said.
I said, "Can I have the straw please mum?"
He echoed, "Straw please mum?"
I didn't realise that he was so fixated on his colours until today, though. At preschool they were singing the song about who is wearing which colour. I think it goes like this: "Blue, blue, blue, who is wearing blue today? Alex is wearing blue today," etc.
Apparently he could name the colour every child in the class was wearing including those children who were out of sight and doing something else at the time!
On one level Bright Eyes is smart to be able to do that, but really it just shows how autistic he is! Sure, he can tell me what colour every one in the room is wearing, but he can't answer a question beginning with the word 'why'.
Thursday, May 17, 2007
What exactly is Autism anyway?
The RDI program distinguishes between the 'core deficits' of autism, and what they call 'co-occuring conditions'.
The Core Deficits are what RDI treats. They include:
Emotional referencing.
An ASD person may be able to recognize and label emotions, but they still have a deficit in checking with someone, or knowing to read someone's face to see what they are thinking.
Social Co-regulation
Think of this as a social dance. ASD sufferers can follow a procedure and a script, but have trouble with the give and take of a regular, unpredictable conversation.
Declarative Communication
ASD people will use language as a means to an end - "Please give me that cookie." But they have a harder time sharing their experiences. "I really love chocolate chip cookies."
Relative Thinking
They can cope with things that are concrete and black and white. They love numbers and quantifiable things. But they have trouble with things that are dependent on variables or the situation at hand. Which is better, jam or peanut butter? Is Dad very cross, or only a little bit annoyed?
Flexible Thinking
They can understand rules and procedures, but being flexible about things is difficult for them. If you normally go to the toilet at preschool after morning tea, can you cope if you're taken before morning tea? What about if you walk a different way to the shops? Will you cope?
Past/Future Thinking
Most people have the ability to reflect on their past experiences, analyse them and use them to help make decisions for the future. People with ASD may lack this and be at a loss in their decision making.
The Co-occuring conditions are things that are often closely associated with autism. For example, the medical side of things - gut and digestion and diet issues. Or sensory challenges. Some autistic people have real problems processing smells or tastes, or distinguishing between noises. Then there are those who have fits or have 'stimming*' behaviours.
RDI doesn't treat these, but recommends that if they are becoming a 'block' to continuing progress, they should be looked at. For example, our consultant suggested that we look into Bright Eyes' diet, as she thought his development in the core deficits could really help from this. We did, and it has!
For us, the diet and biomedical treatments are helping get Bright Eyes' brain into the optimal shape possible to learn, through RDI, the things he has not learned yet because of the autism.
*Stimming means 'self-stimulation' behaviour and includes things like rocking, headbanging, walking in circles, flapping fingers and hands, walking on toes etc. Bright Eyes doesn't have these sorts of stimming behaviours. His are mostly verbal - repeating scripts. He also likes to hold things in his hands, particularly two objects that are the same size and shape - he lines them up with each other and compares them constantly.
The Core Deficits are what RDI treats. They include:
Emotional referencing.
An ASD person may be able to recognize and label emotions, but they still have a deficit in checking with someone, or knowing to read someone's face to see what they are thinking.
Social Co-regulation
Think of this as a social dance. ASD sufferers can follow a procedure and a script, but have trouble with the give and take of a regular, unpredictable conversation.
Declarative Communication
ASD people will use language as a means to an end - "Please give me that cookie." But they have a harder time sharing their experiences. "I really love chocolate chip cookies."
Relative Thinking
They can cope with things that are concrete and black and white. They love numbers and quantifiable things. But they have trouble with things that are dependent on variables or the situation at hand. Which is better, jam or peanut butter? Is Dad very cross, or only a little bit annoyed?
Flexible Thinking
They can understand rules and procedures, but being flexible about things is difficult for them. If you normally go to the toilet at preschool after morning tea, can you cope if you're taken before morning tea? What about if you walk a different way to the shops? Will you cope?
Past/Future Thinking
Most people have the ability to reflect on their past experiences, analyse them and use them to help make decisions for the future. People with ASD may lack this and be at a loss in their decision making.
The Co-occuring conditions are things that are often closely associated with autism. For example, the medical side of things - gut and digestion and diet issues. Or sensory challenges. Some autistic people have real problems processing smells or tastes, or distinguishing between noises. Then there are those who have fits or have 'stimming*' behaviours.
RDI doesn't treat these, but recommends that if they are becoming a 'block' to continuing progress, they should be looked at. For example, our consultant suggested that we look into Bright Eyes' diet, as she thought his development in the core deficits could really help from this. We did, and it has!
For us, the diet and biomedical treatments are helping get Bright Eyes' brain into the optimal shape possible to learn, through RDI, the things he has not learned yet because of the autism.
*Stimming means 'self-stimulation' behaviour and includes things like rocking, headbanging, walking in circles, flapping fingers and hands, walking on toes etc. Bright Eyes doesn't have these sorts of stimming behaviours. His are mostly verbal - repeating scripts. He also likes to hold things in his hands, particularly two objects that are the same size and shape - he lines them up with each other and compares them constantly.
Saturday, May 12, 2007
Tantrums
This blog would not be complete without an entry on tantrums.
Tantrums are a special feature of daily life with an ASD child. Back in pre-diagnosis days, Bright Eyes would have had, on average, six major tantrums per day. I'm talking about kicking, screaming, head banging, running through the house, throwing things around and other generally uncontrollable behaviour.
"Yeah, well, whatever," I might hear parents of any other small child say. "Every kid throws tantrums."
And that is true. My oldest child was a particular expert at the pinching, hitting, hair pulling kind from the age of two. At the age of three she wrote 'No Mummy' on the wall when something didn't go her way. (Black permanent texta... a whole other story.) And up to the age of five she was having regular screaming matches with me when she got overtired, which unfortunately was a lot of nights in a row.
The difference with ASD tantrums is that they are almost completely unpredictable. I could usually understand why my daughter threw her wobblies, but I can hardly ever pinpoint the reasons that Bright Eyes loses it.
This morning, for example, we came inside the house. He sat down, took two shoes and one sock off, then just began crying. He yelled for his sister and dad (who were out at her hockey game) and then screamed "James' room, James' room" at the top of his lungs. At that point he ran sobbing to James' room where he climbed into the cot and continued to cry for the next half hour.
The other difference with ASD tantrums is that it is almost impossible to talk or reason the child out of it. Because I don't understand the cause of the tantrum, and because Bright Eyes' receptive language is poor (ie. he often doesn't appear to understand what I'm talking about), I can't say, "hey buddy, next time you feel sad, you can use words". For a start, he hardly gets the concept of 'next time'...
I think ASD tantrums are like the tantrums of a 12 to 18 month old in many ways. You're dealing with pure emotions that are out of the child's control. With a lot of older (age 2 -3) neurotypical children, you can often head the tantrum off at the pass. Or, even if you can't, you can understand what caused the tantrum (once it's over) and talk about it once everyone is calm again.
Also, you know that it's a stage that every child will go through, and good parenting with a healthy, typical child will bring most of it to a minimum within a reasonable timeframe.
The trouble the ASD is that you are not parenting a healthy, typical child. You don't know what kind of timeframe you are dealing with, and nothing you do seems to help!
There are of course regular ASD tantrums too. These might be the tantrums that happen when something is different from the usual routine. It's always touch and go with us as to whether Bright Eyes will accept having a piece of carrot or broccoli on his plate for dinner. We know he won't eat it, but we're building up to that point!
There are also the coming in/going out tantrums. Getting in and out of the house is a major deal. Going out: he has to stop playing or turn off TV, put shoes and socks on, wait for everyone else to be ready, leave out the front door, get down the steps (he likes to jump off one of the steps - it has to be holding my hand), get into the correct car - or worse, walk. If he's in a good mood, it's fine, but if he decides he doesn't want to, for unknown reasons, I can be chasing him around the house for ten minutes or so.
Coming in is a whole other ball game, and involves lots of rituals that he has to do, or else he will dissolve into screams and sobs and spend the next half hour kicking chairs. I'll describe all of this in another post.
Tantrums that we face regularly are to do with: making transitions from play to meal time; sitting at the table; eating new food; eating regular food; breakfast is always a touchy issue; going to the toilet; going out to play; coming in from play; going up the steps as opposed to the path at school; getting in the bath; getting out of the bath.
Two beauties I must describe to you. Thankfully I was with my mother in the first and my neighbour in the second, so I could manage him plus the other children.
One was at the public swimming pool. I was still stupid enough to think I could trick him into wearing something new, and as we got dressed after a wonderfully happy swim, I popped a white T-shirt over his head. "Shirt OFF, Shirt OFF" he howled. Silly me thought, "No, I'll persist. He has to learn!" and I kept the shirt on. He howled louder, the women in the changeroom started staring and my blood pressure went up and up and up. He tore all his clothes off, wouldn't put a stitch on and ran through the pool complex like a demented little soul, me running after and my poor mum managing the other two (dressed) children behind. In the end I picked him up sniffling and screaming, under one arm and carried him kicking to the car.
The second memorable tantrum came just recently after church. For some reason he had it in his head he wanted to go home in the red car, but I was in charge of our itinerary and travel arrangements and we were walking! The trip home was noisy (him screaming "Red Car Red Car Red Car") and violent. He dropped to the pavement, banged his head on the concrete, was carried part of the way kicking, then threw himself in a rosebush once I put him down. It took 20 minutes to make a five minute walk home and my neighbour very graciously wheeled the pram home and took the other children inside.
I'll talk about how I deal with tantrums in a future post!
Tantrums are a special feature of daily life with an ASD child. Back in pre-diagnosis days, Bright Eyes would have had, on average, six major tantrums per day. I'm talking about kicking, screaming, head banging, running through the house, throwing things around and other generally uncontrollable behaviour.
"Yeah, well, whatever," I might hear parents of any other small child say. "Every kid throws tantrums."
And that is true. My oldest child was a particular expert at the pinching, hitting, hair pulling kind from the age of two. At the age of three she wrote 'No Mummy' on the wall when something didn't go her way. (Black permanent texta... a whole other story.) And up to the age of five she was having regular screaming matches with me when she got overtired, which unfortunately was a lot of nights in a row.
The difference with ASD tantrums is that they are almost completely unpredictable. I could usually understand why my daughter threw her wobblies, but I can hardly ever pinpoint the reasons that Bright Eyes loses it.
This morning, for example, we came inside the house. He sat down, took two shoes and one sock off, then just began crying. He yelled for his sister and dad (who were out at her hockey game) and then screamed "James' room, James' room" at the top of his lungs. At that point he ran sobbing to James' room where he climbed into the cot and continued to cry for the next half hour.
The other difference with ASD tantrums is that it is almost impossible to talk or reason the child out of it. Because I don't understand the cause of the tantrum, and because Bright Eyes' receptive language is poor (ie. he often doesn't appear to understand what I'm talking about), I can't say, "hey buddy, next time you feel sad, you can use words". For a start, he hardly gets the concept of 'next time'...
I think ASD tantrums are like the tantrums of a 12 to 18 month old in many ways. You're dealing with pure emotions that are out of the child's control. With a lot of older (age 2 -3) neurotypical children, you can often head the tantrum off at the pass. Or, even if you can't, you can understand what caused the tantrum (once it's over) and talk about it once everyone is calm again.
Also, you know that it's a stage that every child will go through, and good parenting with a healthy, typical child will bring most of it to a minimum within a reasonable timeframe.
The trouble the ASD is that you are not parenting a healthy, typical child. You don't know what kind of timeframe you are dealing with, and nothing you do seems to help!
There are of course regular ASD tantrums too. These might be the tantrums that happen when something is different from the usual routine. It's always touch and go with us as to whether Bright Eyes will accept having a piece of carrot or broccoli on his plate for dinner. We know he won't eat it, but we're building up to that point!
There are also the coming in/going out tantrums. Getting in and out of the house is a major deal. Going out: he has to stop playing or turn off TV, put shoes and socks on, wait for everyone else to be ready, leave out the front door, get down the steps (he likes to jump off one of the steps - it has to be holding my hand), get into the correct car - or worse, walk. If he's in a good mood, it's fine, but if he decides he doesn't want to, for unknown reasons, I can be chasing him around the house for ten minutes or so.
Coming in is a whole other ball game, and involves lots of rituals that he has to do, or else he will dissolve into screams and sobs and spend the next half hour kicking chairs. I'll describe all of this in another post.
Tantrums that we face regularly are to do with: making transitions from play to meal time; sitting at the table; eating new food; eating regular food; breakfast is always a touchy issue; going to the toilet; going out to play; coming in from play; going up the steps as opposed to the path at school; getting in the bath; getting out of the bath.
Two beauties I must describe to you. Thankfully I was with my mother in the first and my neighbour in the second, so I could manage him plus the other children.
One was at the public swimming pool. I was still stupid enough to think I could trick him into wearing something new, and as we got dressed after a wonderfully happy swim, I popped a white T-shirt over his head. "Shirt OFF, Shirt OFF" he howled. Silly me thought, "No, I'll persist. He has to learn!" and I kept the shirt on. He howled louder, the women in the changeroom started staring and my blood pressure went up and up and up. He tore all his clothes off, wouldn't put a stitch on and ran through the pool complex like a demented little soul, me running after and my poor mum managing the other two (dressed) children behind. In the end I picked him up sniffling and screaming, under one arm and carried him kicking to the car.
The second memorable tantrum came just recently after church. For some reason he had it in his head he wanted to go home in the red car, but I was in charge of our itinerary and travel arrangements and we were walking! The trip home was noisy (him screaming "Red Car Red Car Red Car") and violent. He dropped to the pavement, banged his head on the concrete, was carried part of the way kicking, then threw himself in a rosebush once I put him down. It took 20 minutes to make a five minute walk home and my neighbour very graciously wheeled the pram home and took the other children inside.
I'll talk about how I deal with tantrums in a future post!
Friday, April 27, 2007
His own little world
This photo says a lot about Bright eyes at about the time he was diagnosed with Autistic Spectrum Disorder.The fact that he is actually sitting in the frame with his brother and sister is quite amazing. For the entire year leading up to this point, it was a major issue to get him to be in a photograph with anyone else. Surprisingly, he loved smiling for the camera on his own, but when he had to be part of a group, he would yell, run away and resist fiercely.
See the way he is focused on his trains? He carried those around in his hands all day every day for months. One day we lost one of the carriages. It was a monumental disaster. He cried and cried. We ended up having to buy a whole new set just to get the same colour replacement.
Thomas the tank Engine was his whole world for about three or four months. He talked about it constantly. His first words on getting up and last words on going to bed were 'Thomas has six small wheels' or 'Gordon is number 5. Thomas is number 1. Henry is number 4'. (Correct me if I'm wrong here...)
We can't see his eyes in this photo, but typically he looked fairly glazed. He rarely looked right at people, but kind of 'through' them. I have a vivid memory of seeing him in the car, staring blankly at his trains, ignoring everyone around him. It was as though he was sinking into an abstract land, his own little world, and we'd never be able to get him out.
Tuesday, March 27, 2007
Getting Help II
We went to the developmental paediatrician in September 2006.
Bright Eyes was in fine, typical form. He ran in to the consulting room and found the trains in the toybox right away. After a while he got bored so he started on the switches and buttons in the room. Then he went through all the animals in the animal box.
He yelled loudly and frequently throughout the hour or so we were in there, gradually increasing in intensity and volume. If the doctor wanted to look at him, he yelled and screamed and ran away. I was able to calm him for some of the time by holding him on my knee and singing, but it was clear - this was a child with some serious issues!
Things I told the doctor about:
His scripting language - he could recite songs, books and lines from TV programs off by heart.
His inability to make choices. All the speech therapy books I read said, "Get your child to choose between two things". Ha! If I offered him a choice of anything - red t-shirt and blue t-shirt, juice or water, biscuit or fruit - he would scream loudly and run away.
His inability to answer questions. He was completely floored by any question - even something requiring only a yes or no answer. As for "What's your name?" or "How old are you?" or "What's your favourite toy?"... forget it.
His inability to talk to other people. If any friends and even some family tried to talk to Bright Eyes he would scream or yell, turn away or run away.
As well as: Problems with transitions, picky eating, refusal to wear anything but solid colours and t-shirt material, inability to toilet train, refusal to get into the bath, addiction to music and TV, holding two items in his hands constantly, addiction to Thomas the Tank Engine, extreme sensitivity to other people's anger towards him, apparent inability to feel pain, glassy eyes, inability to follow simple instructions (eg. get your shoes)... la la la la la
After a tiring and noisy hour-long consultation, the doctor said, "What do you think it might be?" I said, "ASD". He said, "I think you're right. With some ADHD added in."
And at the age of three and one month, Bright Eyes had an official diagnosis.
Bright Eyes was in fine, typical form. He ran in to the consulting room and found the trains in the toybox right away. After a while he got bored so he started on the switches and buttons in the room. Then he went through all the animals in the animal box.
He yelled loudly and frequently throughout the hour or so we were in there, gradually increasing in intensity and volume. If the doctor wanted to look at him, he yelled and screamed and ran away. I was able to calm him for some of the time by holding him on my knee and singing, but it was clear - this was a child with some serious issues!
Things I told the doctor about:
His scripting language - he could recite songs, books and lines from TV programs off by heart.
His inability to make choices. All the speech therapy books I read said, "Get your child to choose between two things". Ha! If I offered him a choice of anything - red t-shirt and blue t-shirt, juice or water, biscuit or fruit - he would scream loudly and run away.
His inability to answer questions. He was completely floored by any question - even something requiring only a yes or no answer. As for "What's your name?" or "How old are you?" or "What's your favourite toy?"... forget it.
His inability to talk to other people. If any friends and even some family tried to talk to Bright Eyes he would scream or yell, turn away or run away.
As well as: Problems with transitions, picky eating, refusal to wear anything but solid colours and t-shirt material, inability to toilet train, refusal to get into the bath, addiction to music and TV, holding two items in his hands constantly, addiction to Thomas the Tank Engine, extreme sensitivity to other people's anger towards him, apparent inability to feel pain, glassy eyes, inability to follow simple instructions (eg. get your shoes)... la la la la la
After a tiring and noisy hour-long consultation, the doctor said, "What do you think it might be?" I said, "ASD". He said, "I think you're right. With some ADHD added in."
And at the age of three and one month, Bright Eyes had an official diagnosis.
Getting Help I
By the time Bright Eyes was two I was ready to get some help.
Everything I did was scattered over the period of about 12 months, and was complicated by the fact that I became pregnant and gave birth in the middle of it all.
At the beginning of this stage I just thought his problem was delayed speech, so I rang the local health centre and booked in for some speech therapy. They brought him in, had a look at him and said I should join the 'tiny talkers' program they had. I went to one session, took home the literature and tried to do everything they said, but nothing really seemed to work.
I went to the GP a little later. "I'm concerned about his speech. Do you think he could see a paediatrician?" He was a nice GP and wanted to save me some money. "I think the paediatrician would just refer you to a speechie - so why don't we try that first," he said.
I duly went to six sessions with a lovely lady who tried some things, said that he had lots of language but was not using it appropriately and in not so many words said that I wasn't tough enough with him. He did seem to improve a little from the therapy, but it was expensive and I was heavily pregnant so we didn't continue going. I thought I would just try to keep doing what she had showed me.
Things started to get worse. When the new baby was born Bright Eyes threw tantrum after tantrum all day long for hours at a time. He would run away, crawl under the furniture, kick and scream and resist anything I tried to do. I couldn't take him anywhere because he was uncontrollable. I even resorted to buying a 'Supernanny' book and tried to implement some 'naughty spots' because I thought he was just a very difficult little boy.
But again, nothing worked.
As the year went on and Bright Eyes approached the age of three, it was becoming more and more apparent that he was not just 'picking it up' and things were not improving.
My GP father in law said to me, "I think you should get this child to a developmental paediatrician. He's got some problems."
So I went down to my GP and said, "Please write a referral to a developmental paediatrician." She did so, and I made the appointment. Unfortunately the next one wasn't available for another three months, so I had some waiting to do.
Everything I did was scattered over the period of about 12 months, and was complicated by the fact that I became pregnant and gave birth in the middle of it all.
At the beginning of this stage I just thought his problem was delayed speech, so I rang the local health centre and booked in for some speech therapy. They brought him in, had a look at him and said I should join the 'tiny talkers' program they had. I went to one session, took home the literature and tried to do everything they said, but nothing really seemed to work.
I went to the GP a little later. "I'm concerned about his speech. Do you think he could see a paediatrician?" He was a nice GP and wanted to save me some money. "I think the paediatrician would just refer you to a speechie - so why don't we try that first," he said.
I duly went to six sessions with a lovely lady who tried some things, said that he had lots of language but was not using it appropriately and in not so many words said that I wasn't tough enough with him. He did seem to improve a little from the therapy, but it was expensive and I was heavily pregnant so we didn't continue going. I thought I would just try to keep doing what she had showed me.
Things started to get worse. When the new baby was born Bright Eyes threw tantrum after tantrum all day long for hours at a time. He would run away, crawl under the furniture, kick and scream and resist anything I tried to do. I couldn't take him anywhere because he was uncontrollable. I even resorted to buying a 'Supernanny' book and tried to implement some 'naughty spots' because I thought he was just a very difficult little boy.
But again, nothing worked.
As the year went on and Bright Eyes approached the age of three, it was becoming more and more apparent that he was not just 'picking it up' and things were not improving.
My GP father in law said to me, "I think you should get this child to a developmental paediatrician. He's got some problems."
So I went down to my GP and said, "Please write a referral to a developmental paediatrician." She did so, and I made the appointment. Unfortunately the next one wasn't available for another three months, so I had some waiting to do.
Saturday, March 24, 2007
The second year: signs emerging
The second year of Bright Eyes' life was where we started to notice that he was not developing normally.
He had an absolute obsession with pressing buttons. When we arrived at my parents house, he would run straight through the door, ignoring the grandparents, heading for the video, TV, remotes, light switches, phones, computer, fan, oven (!!) and any other switches he could find.
For a long time I tried the tactics that had worked with my daughter from the age of 8 months: Say "Bright Eyes, No" in a deep growl. Walk up, remove his hand, take him away from the situation and distract with something else.
Ha! It didn't work the first time, and it never ever worked after that. If he was removed happily, he'd head straight back for the switch and keep presing. If he wasn't removed happily he would throw an enormous tantrum for 1/2 hour and then head straight back for the switch and keep pressing.
After a lot of trial, I realised it was hopeless and didn't worry about the switches in our house. For a while I made a half-hearted effort in other people's places to show that I was a respectable mother, but most of the time I just picked things up out of his reach or tried to ignore it.
He looked past people and avoided their gaze. In fact, he got very upset if most people looked at him, spoke to him or in any way acknowledged him. Again, I made efforts to get him to look at family and friends to say hello and goodbye, but after months of failure my efforts were mostly token and for show so that others wouldn't think I was a hopeless or irresponsible parent.
He didn't talk. Not only that, he didn't seem to be understanding things either. Other children about the same age seemed to be able to 'get' concepts like 'Mummy's got a baby in her tummy', or 'we're going to church now' or 'this is a birthday party and we're having cake'. Bright Eyes seemed oblivious to most things around him. He lived only for the immediate moment.
He couldn't make transitions. Every day is made up of transitions from one activity to another. "Now we're eating breakfast. It's finished, so we now go and get dressed. Now it's play time outside, now we have to go inside..." Every transition Bright Eyes made, he got hysterical. Moving from simple activity to simple activity was distressing and difficult for him, even though he had done each thing over and over again every day.
He ran away. All the time, wherever we went, as far as he could go and extremely quickly. From being a baby who hardly moved, he suddenly found some speed once he began to walk and my days of carrying on involved adult conversations in unfenced areas were over. We lost him onto main roads twice and spent two 15 minute periods looking for him when he disappeared on the communal property where we lived. (He was behind the bushes next to the fence, and in another family's unlocked upstairs apartment.)
He hardly felt any pain. I was proud of my tough little fella. Unlike his big sister who was always 'more sensitive' (nice words for being a complete sook), if Bright Eyes fell over, he just got up and kept on going. Most other children would have been screaming with some of the knocks he took, but he hardly seemed to notice. "He should be a football player" I said proudly. Little did i know that feeling no pain is a common feature of autistic children.
All of these things made me start asking questions. I just didn't feel right about his development. But at the same time there seemed to be lots of normal things too. He was affectionate with us. He adored his big sister and would play with her as much as he could. He seemed to eat well enough (although he was incredibly picky - more on this in later posts) and he was growing. Also, he was hardly ever sick and I breast-fed him until he was nearly 2.
He had an absolute obsession with pressing buttons. When we arrived at my parents house, he would run straight through the door, ignoring the grandparents, heading for the video, TV, remotes, light switches, phones, computer, fan, oven (!!) and any other switches he could find.
For a long time I tried the tactics that had worked with my daughter from the age of 8 months: Say "Bright Eyes, No" in a deep growl. Walk up, remove his hand, take him away from the situation and distract with something else.
Ha! It didn't work the first time, and it never ever worked after that. If he was removed happily, he'd head straight back for the switch and keep presing. If he wasn't removed happily he would throw an enormous tantrum for 1/2 hour and then head straight back for the switch and keep pressing.
After a lot of trial, I realised it was hopeless and didn't worry about the switches in our house. For a while I made a half-hearted effort in other people's places to show that I was a respectable mother, but most of the time I just picked things up out of his reach or tried to ignore it.
He looked past people and avoided their gaze. In fact, he got very upset if most people looked at him, spoke to him or in any way acknowledged him. Again, I made efforts to get him to look at family and friends to say hello and goodbye, but after months of failure my efforts were mostly token and for show so that others wouldn't think I was a hopeless or irresponsible parent.
He didn't talk. Not only that, he didn't seem to be understanding things either. Other children about the same age seemed to be able to 'get' concepts like 'Mummy's got a baby in her tummy', or 'we're going to church now' or 'this is a birthday party and we're having cake'. Bright Eyes seemed oblivious to most things around him. He lived only for the immediate moment.
He couldn't make transitions. Every day is made up of transitions from one activity to another. "Now we're eating breakfast. It's finished, so we now go and get dressed. Now it's play time outside, now we have to go inside..." Every transition Bright Eyes made, he got hysterical. Moving from simple activity to simple activity was distressing and difficult for him, even though he had done each thing over and over again every day.
He ran away. All the time, wherever we went, as far as he could go and extremely quickly. From being a baby who hardly moved, he suddenly found some speed once he began to walk and my days of carrying on involved adult conversations in unfenced areas were over. We lost him onto main roads twice and spent two 15 minute periods looking for him when he disappeared on the communal property where we lived. (He was behind the bushes next to the fence, and in another family's unlocked upstairs apartment.)
He hardly felt any pain. I was proud of my tough little fella. Unlike his big sister who was always 'more sensitive' (nice words for being a complete sook), if Bright Eyes fell over, he just got up and kept on going. Most other children would have been screaming with some of the knocks he took, but he hardly seemed to notice. "He should be a football player" I said proudly. Little did i know that feeling no pain is a common feature of autistic children.
All of these things made me start asking questions. I just didn't feel right about his development. But at the same time there seemed to be lots of normal things too. He was affectionate with us. He adored his big sister and would play with her as much as he could. He seemed to eat well enough (although he was incredibly picky - more on this in later posts) and he was growing. Also, he was hardly ever sick and I breast-fed him until he was nearly 2.
Friday, March 23, 2007
The first year
Bright Eyes was a very easy baby from the beginning. He was placid, easy to put to sleep and easy to look after. The only problem I really had was his waking every 3 hours for more food until the age of about 8 months. Because of all the milk he drank he was also the fattest baby I'd ever seen.
He smiled a lot, seemed to be aware and appeared normal. I did notice that if we tried to get his attention to play with him, he would often look away or appear not to notice us. I didn't think about it much at the time - perhaps he was tired, or he wasn't interested.
When he was six months we visited some babies (triplets) the same age. I was shocked at the difference between them. They were wriggly little things, investigating toys, trying to get around the room and intensely alert. By contrast Bright Eyes looked a little like a beached whale - he lay on his back and gurgled! I put it down to there being three of them to entertain each other.
At 1 Bright Eyes was starting to get grizzly and a little hard to get on with. On his first birthday he came out from his nap to find the room full of relatives and birthday cake. He wasn't happy and screamed solidly for about half an hour. We all had to not look at him so he would calm down.
As time went on, that became a bit of a habit: if he was the centre of attention, he tended to scream. He was happiest if people didn't talk to him and didn't look at him. He didn't seem to be able to handle it.
He had all his injections at the regular times and showed no signs of infection or discomfort. He kept breastfeeding madly but started to be a picky eater with his solids.
There were no obvious signs of autistic spectrum disorder in the first year. Looking back I can see some signs that things were heading in that direction, but for the most part Bright Eyes was a happy little chap and we were delighted to have him.
He smiled a lot, seemed to be aware and appeared normal. I did notice that if we tried to get his attention to play with him, he would often look away or appear not to notice us. I didn't think about it much at the time - perhaps he was tired, or he wasn't interested.
When he was six months we visited some babies (triplets) the same age. I was shocked at the difference between them. They were wriggly little things, investigating toys, trying to get around the room and intensely alert. By contrast Bright Eyes looked a little like a beached whale - he lay on his back and gurgled! I put it down to there being three of them to entertain each other.
At 1 Bright Eyes was starting to get grizzly and a little hard to get on with. On his first birthday he came out from his nap to find the room full of relatives and birthday cake. He wasn't happy and screamed solidly for about half an hour. We all had to not look at him so he would calm down.
As time went on, that became a bit of a habit: if he was the centre of attention, he tended to scream. He was happiest if people didn't talk to him and didn't look at him. He didn't seem to be able to handle it.
He had all his injections at the regular times and showed no signs of infection or discomfort. He kept breastfeeding madly but started to be a picky eater with his solids.
There were no obvious signs of autistic spectrum disorder in the first year. Looking back I can see some signs that things were heading in that direction, but for the most part Bright Eyes was a happy little chap and we were delighted to have him.
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