After some positive posts, I feel compelled to even out the balance and share about today's tantrum.
It's cold here in Mittagong, but even so, I have had trouble getting Bright Eyes to wear his warm jacket. He doesn't seem to want to understand that the unpleasant feeling when the wind blows could be taken away if he had the jacket on.
I noticed today at preschool he was wearing his jacket. So when we set out to take older sister plus two friends to Kids club down the road this afternoon, I thought I would make him wear it.
It didn't work.
Picture me with a baby in a pram plus three other children and a bag of library books getting out the door with Bright Eyes yelling at the top of his lungs, "Jacket Off Jacket Off Jacket Off!" He wouldn't walk, so I carried him kicking and screaming, whilst pushing the pram, across two roads and up to the meeting hall.
The little girls were very helpful but slightly overawed by the fracas. I sent them in while Bright Eyes, jacket off by this time, headed behind a large bush and melted down for a while. We (baby and me) stood and waited until he calmed down a little and ran into the Kids Club hall, which is a place he loves to go every week.
From that point, he was fine. We went to the library as normal. And the jacket stayed off. The next bout of kicking and screaming came on for bathtime...
I got home sick of the whole thing and more than slightly frazzled.
How do they get that jacket on at preschool?
Thursday, May 31, 2007
Tuesday, May 29, 2007
Wow!
I just have to share this.
For the sheer heck of it, I put a piece of lettuce on Bright Eyes' plate of dinner tonight. See here for some background on his eating habits.
He usually has the same thing every night because it's easier. Sometimes I add something new, but he usually worries loudly about it and gets rid of it straight away.
Tonight, however, he said, "Yummy lettuce" and put it straight in his mouth.
The joy didn't last long though... he pulled it out again after the taste hit his tongue and said, "yuckky taste. Yuck." We put it on another plate but left it on the table, and he was fine.
I can't believe it!
For the sheer heck of it, I put a piece of lettuce on Bright Eyes' plate of dinner tonight. See here for some background on his eating habits.
He usually has the same thing every night because it's easier. Sometimes I add something new, but he usually worries loudly about it and gets rid of it straight away.
Tonight, however, he said, "Yummy lettuce" and put it straight in his mouth.
The joy didn't last long though... he pulled it out again after the taste hit his tongue and said, "yuckky taste. Yuck." We put it on another plate but left it on the table, and he was fine.
I can't believe it!
Monday, May 28, 2007
This week....
Bright Eyes has been loving getting naked! At any opportunity he'll strip off his clothes and come out to me with a huge smile.
I'm not unhappy about it because he's showing initiative in deciding to be without clothes, he's showing competence in actually getting said clothes off his body, he's showing good relationship skills in that he likes to come and show me what he's done, and he's showing a good sense of humour because he thinks its funny and he wants to share it with me!
He's also had a bit of original thought this week.
Him: "James is Mr Green and Red and Yellow" (referring to the colour of his clothes.) "I'm Mr Green and Red and Yellow."
Me: "No, you're Mr Blue!"
Him: "You're white" looking at me, wearing a white jumper.
Him: "You're snowman!"
And he's starting to connect the days of the week with our regular activities. This is not something I've been teaching him, as it would be too easy to let it become a script or mantra he just repeats. But he's coming out with the information himself!
I'm not unhappy about it because he's showing initiative in deciding to be without clothes, he's showing competence in actually getting said clothes off his body, he's showing good relationship skills in that he likes to come and show me what he's done, and he's showing a good sense of humour because he thinks its funny and he wants to share it with me!
He's also had a bit of original thought this week.
Him: "James is Mr Green and Red and Yellow" (referring to the colour of his clothes.) "I'm Mr Green and Red and Yellow."
Me: "No, you're Mr Blue!"
Him: "You're white" looking at me, wearing a white jumper.
Him: "You're snowman!"
And he's starting to connect the days of the week with our regular activities. This is not something I've been teaching him, as it would be too easy to let it become a script or mantra he just repeats. But he's coming out with the information himself!
Lab time
We spend half an hour a day doing what RDI calls 'lab time'. We go into a room with no distractions - objects, pictures or extra things Bright Eyes can fiddle with - and we engage with him, doing various activities.
In a way, the activities themselves are unimportant. What is important is the objective we're working on.
When we started out, there were two main objectives.
The first was for us, the parents, and involved broadening our communication bandwidth. Big words, but it basically means communicating in ways other than just speech.
Body language, facial expression, gasps and little noises, gestures... all of these are natural parts of communication, and are the subtle things that autistic people will often miss, as they tend to focus on spoken words only.
I try not to talk at all in our half hour together, or only say really necessary things. So I'm teaching him that we can communicate in a multitude of ways.
His main objective at the beginning was to be able to 'regulate' with me. In other words, we were working on doing things together. In whatever we did, we had to have a balance of actions - we both had to be participants with roles and responsibilities in whatever we did.
The idea is not to insist on getting the activity 'right' but to focus on the objectives instead.
The activities I started out with involved things such as:
- taking turns putting coins in the slot of a money box
- me blowing up a balloon and letting it go, and him running to retrieve it and bringing it back
- rolling or bouncing a ball between us
- playing ring a ring a rosie, or jack in the box, or other rhymes with actions where we each had a part
- playing hiding and peek-a-boo with a turn each
- playing row row your boat
A lot of the activities involve sitting at a cute little table. But we do a lot of things on the floor too. I'm doing more physical things these days - flying aeroplanes with me on my back, feet up and him balancing on my feet, or him doing headstands with support from me. I find he does better with things where we have a close 'zone of connection'.
One wonderful activity we did a few weeks ago involved me directing him with my gaze to climb onto the little table via one of two routes, then him getting to the top and looking at me, waiting for my nod to jump giggling off the table and into my arms.
Today's lab time involved:
- drawing shapes together at the table. I drew one, then he copied over it.
- I drew a face and he told me what things (eyes, ears, mouth etc) to put on it.
- rolling on the floor
- flying aeroplane balance game
- pat a cake pat a cake rhyming game
When we first started I wondered how I was going to be able to get a very non-compliant child to do the wonderful things I saw in the videos of RDI lab time. And there are still many instances where Bright Eyes goes passive and sulky and refuses to cooperate. Sometimes, but not often, we get a bit of a tantrum as well.
When this happens, I gather him up, sit him on my lap, and rock rhythmically from side to side, or front to back. He calms down pretty quickly, and will then start to take on responsibility for the rocking as well. I can feel him moving from side to side on my lap. So we are still learning regulation, doing things together, even if it is as simple an activity as that. One lab time, several months ago, I spent 20 minutes out of 30 just rocking!
In a way, the activities themselves are unimportant. What is important is the objective we're working on.
When we started out, there were two main objectives.
The first was for us, the parents, and involved broadening our communication bandwidth. Big words, but it basically means communicating in ways other than just speech.
Body language, facial expression, gasps and little noises, gestures... all of these are natural parts of communication, and are the subtle things that autistic people will often miss, as they tend to focus on spoken words only.
I try not to talk at all in our half hour together, or only say really necessary things. So I'm teaching him that we can communicate in a multitude of ways.
His main objective at the beginning was to be able to 'regulate' with me. In other words, we were working on doing things together. In whatever we did, we had to have a balance of actions - we both had to be participants with roles and responsibilities in whatever we did.
The idea is not to insist on getting the activity 'right' but to focus on the objectives instead.
The activities I started out with involved things such as:
- taking turns putting coins in the slot of a money box
- me blowing up a balloon and letting it go, and him running to retrieve it and bringing it back
- rolling or bouncing a ball between us
- playing ring a ring a rosie, or jack in the box, or other rhymes with actions where we each had a part
- playing hiding and peek-a-boo with a turn each
- playing row row your boat
A lot of the activities involve sitting at a cute little table. But we do a lot of things on the floor too. I'm doing more physical things these days - flying aeroplanes with me on my back, feet up and him balancing on my feet, or him doing headstands with support from me. I find he does better with things where we have a close 'zone of connection'.
One wonderful activity we did a few weeks ago involved me directing him with my gaze to climb onto the little table via one of two routes, then him getting to the top and looking at me, waiting for my nod to jump giggling off the table and into my arms.
Today's lab time involved:
- drawing shapes together at the table. I drew one, then he copied over it.
- I drew a face and he told me what things (eyes, ears, mouth etc) to put on it.
- rolling on the floor
- flying aeroplane balance game
- pat a cake pat a cake rhyming game
When we first started I wondered how I was going to be able to get a very non-compliant child to do the wonderful things I saw in the videos of RDI lab time. And there are still many instances where Bright Eyes goes passive and sulky and refuses to cooperate. Sometimes, but not often, we get a bit of a tantrum as well.
When this happens, I gather him up, sit him on my lap, and rock rhythmically from side to side, or front to back. He calms down pretty quickly, and will then start to take on responsibility for the rocking as well. I can feel him moving from side to side on my lap. So we are still learning regulation, doing things together, even if it is as simple an activity as that. One lab time, several months ago, I spent 20 minutes out of 30 just rocking!
Friday, May 25, 2007
A shot of optimism
I like hanging out at Bright Eyes' preschool. I feel a little bit suspicious sometimes as I take my time signing him in and out and walk around trying not to look too aimless.
The reason is that I like talking to the teachers about Bright Eyes. It gives me a little shot of optimism in my week to hear that he's been happy, that he's done a painting, that he's played well with the trains, or the toys or sat through the group time quietly.
I find it easy to get a bit depressed about him the rest of the week. Even with all his improvements, he's still a child on the autistic spectrum and I still have to fight him to go in and out the door, and work really hard in his RDI therapy. Life ain't normal, no matter how well he's doing.
So it's really good to chat with the teachers who have spent time with him, and who really seem to care about him. They have a 'communication book' in which they write down what he's been doing during his day, which helps me too. It's wonderful to 'share' him with lots of people who are enthusiastic about him.
The reason is that I like talking to the teachers about Bright Eyes. It gives me a little shot of optimism in my week to hear that he's been happy, that he's done a painting, that he's played well with the trains, or the toys or sat through the group time quietly.
I find it easy to get a bit depressed about him the rest of the week. Even with all his improvements, he's still a child on the autistic spectrum and I still have to fight him to go in and out the door, and work really hard in his RDI therapy. Life ain't normal, no matter how well he's doing.
So it's really good to chat with the teachers who have spent time with him, and who really seem to care about him. They have a 'communication book' in which they write down what he's been doing during his day, which helps me too. It's wonderful to 'share' him with lots of people who are enthusiastic about him.
Monday, May 21, 2007
In Sydney right now
The founder of RDI, Dr Gutstein, is in Australia at the moment, running a conference. I wanted to be involved in a press conference yesterday talking about RDI, but was unable to get there. However, this article was published in today's Australian newspaper, quoting Dr Gutstein and calling for financial help for families with autistic children.
Call for more aid for autistic and their families
Sarah Elks
21 May 2007
LINDSAY Salmon's two favourite things are toy trains and composing music.
But like one in every 160 Australians, six-year-old Lindsay suffers from autism.
His parents, Jane and Jim Salmon, worry that his condition may deteriorate, because they can not afford treatment for the condition that impairs social and communication skills.
The Sydney family's situation mirrors that of many Australian families affected by autism who receive little or no government funding.
"It doesn't matter whether you're rich or poor. No one gets the help they need," Mrs Salmon said. "Why aren't any of the treatment programs on Medicare? That would be a simple way for the Government to make life easier for us.
"My son is composing music at the moment, at six. I don't think he'd be doing that without early help. I don't want him going backwards.
"Treatment should be affordable for me. It's right here in front of me, I can almost touch it. But I just can't afford it."
Mrs Salmon said it was unfair to ignore the needs of children with autistic spectrum disorders (ASD). "These kids are innocents," she said. "Why not give these very innocent people a go? They have so much potential."
A report by Synergy Economic Consulting for the Autism Early Intervention Outcomes Unit reveals some families waited up to two years for diagnosis. It also found treatment and the economic impact of autism on the Australian community was up to $7billion each year.
Of that, $3.63 billion a year is due to unemployment of people with autism.
International autism expert Steve Gutstein, speaking in Sydney at a conference yesterday, said the Australian Government needed to provide more support for autism sufferers and their families.
"In some areas in Australia, there's a complete lack of federal support for autism," Dr Gutstein said. "In Australia, because you're starting from a basis of little, we're hoping you can do itright."
Dr Gutstein, who founded the Relationship Development Intervention (RDI) autism treatment method, said the Government should focus on supporting families and on the long-term economic impact of autism.
"Firstly, you need to steer the resources to the parents. We need to educate and support the parents, to work with their children effectively. That is going to pay off in the long run," he said.
"Second, you need to realistically look at the long-term effects. We're dealing with a large population now, one out of 160 people have ASD.
"They're not mentally retarded, that's a myth. They could be employed. They could be having lives. Yet when we look at the studies of the most capable people with autism, the data shows that less than 15 per cent ever have a job. Less than 3 per cent ever live on their own.
"Your Government needs to think about the long term and about how to help families help their kids to be productive."
Call for more aid for autistic and their families
Sarah Elks
21 May 2007
LINDSAY Salmon's two favourite things are toy trains and composing music.
But like one in every 160 Australians, six-year-old Lindsay suffers from autism.
His parents, Jane and Jim Salmon, worry that his condition may deteriorate, because they can not afford treatment for the condition that impairs social and communication skills.
The Sydney family's situation mirrors that of many Australian families affected by autism who receive little or no government funding.
"It doesn't matter whether you're rich or poor. No one gets the help they need," Mrs Salmon said. "Why aren't any of the treatment programs on Medicare? That would be a simple way for the Government to make life easier for us.
"My son is composing music at the moment, at six. I don't think he'd be doing that without early help. I don't want him going backwards.
"Treatment should be affordable for me. It's right here in front of me, I can almost touch it. But I just can't afford it."
Mrs Salmon said it was unfair to ignore the needs of children with autistic spectrum disorders (ASD). "These kids are innocents," she said. "Why not give these very innocent people a go? They have so much potential."
A report by Synergy Economic Consulting for the Autism Early Intervention Outcomes Unit reveals some families waited up to two years for diagnosis. It also found treatment and the economic impact of autism on the Australian community was up to $7billion each year.
Of that, $3.63 billion a year is due to unemployment of people with autism.
International autism expert Steve Gutstein, speaking in Sydney at a conference yesterday, said the Australian Government needed to provide more support for autism sufferers and their families.
"In some areas in Australia, there's a complete lack of federal support for autism," Dr Gutstein said. "In Australia, because you're starting from a basis of little, we're hoping you can do itright."
Dr Gutstein, who founded the Relationship Development Intervention (RDI) autism treatment method, said the Government should focus on supporting families and on the long-term economic impact of autism.
"Firstly, you need to steer the resources to the parents. We need to educate and support the parents, to work with their children effectively. That is going to pay off in the long run," he said.
"Second, you need to realistically look at the long-term effects. We're dealing with a large population now, one out of 160 people have ASD.
"They're not mentally retarded, that's a myth. They could be employed. They could be having lives. Yet when we look at the studies of the most capable people with autism, the data shows that less than 15 per cent ever have a job. Less than 3 per cent ever live on their own.
"Your Government needs to think about the long term and about how to help families help their kids to be productive."
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.
Tuesday, May 15, 2007
Update
I just want to share something with you kind Rainy But Clearing readers.
Today Bright Eyes saw his sister playing with lego. He went up to her, stood beside her and said, using her name, "What are you doing?" He waited to hear the answer and then joined in.
He asked the same question at appropriate points in the day to other people too. It was wonderful.
Another encouragement: I was feeling so tired that I nearly gave up on doing his RDI therapy half hour. But I persisted, and he enjoyed our 'rolling' game so much that he was really disappointed when I said it was time to stop!
A tiny feeling of discouragement: Our local school had a preschoolers open day today. It made me shiver. Next year, Bright Eyes could be going to that.
But will he even be close to ready to think about going to school? According to the RDI program, he functions at the social level of a nearly two year old. Will he have progressed enough to cope?
Today Bright Eyes saw his sister playing with lego. He went up to her, stood beside her and said, using her name, "What are you doing?" He waited to hear the answer and then joined in.
He asked the same question at appropriate points in the day to other people too. It was wonderful.
Another encouragement: I was feeling so tired that I nearly gave up on doing his RDI therapy half hour. But I persisted, and he enjoyed our 'rolling' game so much that he was really disappointed when I said it was time to stop!
A tiny feeling of discouragement: Our local school had a preschoolers open day today. It made me shiver. Next year, Bright Eyes could be going to that.
But will he even be close to ready to think about going to school? According to the RDI program, he functions at the social level of a nearly two year old. Will he have progressed enough to cope?
Sunday, May 13, 2007
Tantrums and how to deal with them II
I should add an update about our current tantrum situation.
I estimate we probably experience one middle sized tantrum every second day or so, and one major one per week.
Bright Eyes has several daily small 'reactions' to transitions, and a few yells for a few minutes when we turn off the telly or come in the door, but in general, the hours of screaming have diminished a whole lot.
(Interestingly he has never yet thrown a wobbly at preschool!)
These days I am far more careful with triggering things off. But at the same time, I am less scared of his big outbursts, which adds a certain amount of calm to the whole situation. I frequently give positive feedback for good communication or calm behaviour.
When he does get a tantrum, I still do leave him to cry it out for up to half an hour or so, depending on what else I have to do. I notice though, that when I go in to calm him down, he is expecting me, and will quiet fairly quickly. I sit him on my knee, hug firmly and gently rock back and forth. After a few minutes of that soothing activity he will usually hop off himself and head on out the door looking for something else to do.
As his brain starts to work better from the diet changes, the supplements and the RDI therapy, he is becoming less tense, less upset about change and less explosive. As his receptive language improves and his ability to express himself improves, he is more able to say what he needs and not have to resort to screaming, pounding his arms, and kicking his legs on the floor.
It all works together!
I estimate we probably experience one middle sized tantrum every second day or so, and one major one per week.
Bright Eyes has several daily small 'reactions' to transitions, and a few yells for a few minutes when we turn off the telly or come in the door, but in general, the hours of screaming have diminished a whole lot.
(Interestingly he has never yet thrown a wobbly at preschool!)
These days I am far more careful with triggering things off. But at the same time, I am less scared of his big outbursts, which adds a certain amount of calm to the whole situation. I frequently give positive feedback for good communication or calm behaviour.
When he does get a tantrum, I still do leave him to cry it out for up to half an hour or so, depending on what else I have to do. I notice though, that when I go in to calm him down, he is expecting me, and will quiet fairly quickly. I sit him on my knee, hug firmly and gently rock back and forth. After a few minutes of that soothing activity he will usually hop off himself and head on out the door looking for something else to do.
As his brain starts to work better from the diet changes, the supplements and the RDI therapy, he is becoming less tense, less upset about change and less explosive. As his receptive language improves and his ability to express himself improves, he is more able to say what he needs and not have to resort to screaming, pounding his arms, and kicking his legs on the floor.
It all works together!
Tantrums and how to deal with them
My heading hints that I actually know what I'm talking about! Perhaps I now know more than I used to, but I frequently feel I know nothing at all.
A few months ago, I had nothing to do for the tantrums except to pick him up under one arm or over one shoulder, take him to where I wanted him to be, let him scream and cry for up to half an hour to get him tired, and then go in and try to hold him to calm him down.
This could take anywhere from 10 to 30 minutes, and always involved a tricky period where if I moved or did anything differently he would restart the whole tantrum over again.
I brought a lot of tantrums on myself. I would be determined that he should wear the shirt/eat the food/ do the thing I had chosen, and it became a battle of wills - which I lost, time after time!
My attitude was: well, he has to learn, and if it takes tantrums to learn, well, so be it.
Then I found the book 'The Explosive Child' by Ross Greene which changed a lot of my thinking.
One of the main shifts was working out what was worth having a tantrum over. Greene advocates a 'three basket' approach.
Basket A is for the things which are truly necessary or else the child will die or self-harm. For example, you must enforce that the child shall not run on the road.
Basket B is for the things that are important right now and that the child is able to handle and learn.
Basket C is for the things that are not important right now. If you have a battle of wills and a tantrum over these things, it is a waste of everyone's time and energy.
For us, the things that went in Basket A were pretty easy to sort out. Then it was a matter of looking at our lives and sorting out what was important now, and what was not important now.
Basket C contains those things which in normal circumstances I would require of my child, but which I know Bright Eyes is incapable (at the moment) of doing. It currently contains, amongst other things:
- what Bright Eyes wears in general and who chooses it.
- what he eats in general.
- which door he gets out of the car and how many buttons he presses on the dashboard on the way out. (Obviously, I keep him safe...)
- Many age-appropriate chores such as cleaning up his room, making his bed etc which I might expect of another child.
- answering questions other people ask him which may be too complex for him.
- sitting up for meals at other people's houses.
A few things have recently moved to Basket B. This is because I know now that he can manage to do these things, and he gets plenty of positive feedback for them. Currently in Basket B are, amongst other things:
- wearing a hat at preschool.
- saying please, thankyou, hello and goodbye to people
- answering my simple questions.
- sitting at the table for at least two minutes at meals at home
- being dressed, with socks and shoes on when necessary.
Toileting is hovering between Baskets C and B at the moment. I know he can do it, but I don't push it if he shows reluctance. I do keep giving positive feedback for what he does do.
The book emphasises not trying to control a child, but trying to teach them how to control themselves. It can be a long road for tired parents and frustrated children, but it is a much better approach in the long run than simply 'requiring' certain behaviours, which a child may not be able to perform.
A few months ago, I had nothing to do for the tantrums except to pick him up under one arm or over one shoulder, take him to where I wanted him to be, let him scream and cry for up to half an hour to get him tired, and then go in and try to hold him to calm him down.
This could take anywhere from 10 to 30 minutes, and always involved a tricky period where if I moved or did anything differently he would restart the whole tantrum over again.
I brought a lot of tantrums on myself. I would be determined that he should wear the shirt/eat the food/ do the thing I had chosen, and it became a battle of wills - which I lost, time after time!
My attitude was: well, he has to learn, and if it takes tantrums to learn, well, so be it.
Then I found the book 'The Explosive Child' by Ross Greene which changed a lot of my thinking.
One of the main shifts was working out what was worth having a tantrum over. Greene advocates a 'three basket' approach.
Basket A is for the things which are truly necessary or else the child will die or self-harm. For example, you must enforce that the child shall not run on the road.
Basket B is for the things that are important right now and that the child is able to handle and learn.
Basket C is for the things that are not important right now. If you have a battle of wills and a tantrum over these things, it is a waste of everyone's time and energy.
For us, the things that went in Basket A were pretty easy to sort out. Then it was a matter of looking at our lives and sorting out what was important now, and what was not important now.
Basket C contains those things which in normal circumstances I would require of my child, but which I know Bright Eyes is incapable (at the moment) of doing. It currently contains, amongst other things:
- what Bright Eyes wears in general and who chooses it.
- what he eats in general.
- which door he gets out of the car and how many buttons he presses on the dashboard on the way out. (Obviously, I keep him safe...)
- Many age-appropriate chores such as cleaning up his room, making his bed etc which I might expect of another child.
- answering questions other people ask him which may be too complex for him.
- sitting up for meals at other people's houses.
A few things have recently moved to Basket B. This is because I know now that he can manage to do these things, and he gets plenty of positive feedback for them. Currently in Basket B are, amongst other things:
- wearing a hat at preschool.
- saying please, thankyou, hello and goodbye to people
- answering my simple questions.
- sitting at the table for at least two minutes at meals at home
- being dressed, with socks and shoes on when necessary.
Toileting is hovering between Baskets C and B at the moment. I know he can do it, but I don't push it if he shows reluctance. I do keep giving positive feedback for what he does do.
The book emphasises not trying to control a child, but trying to teach them how to control themselves. It can be a long road for tired parents and frustrated children, but it is a much better approach in the long run than simply 'requiring' certain behaviours, which a child may not be able to perform.
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!
Thursday, May 3, 2007
The Results
In a nutshell, what came out of the tests was: -
1. Bright Eyes is low in zinc and high in copper. The normal body ratio is 1:1. His is 2:7. This stops his brain working properly, and has an impact on his gut as well.
2. He has parasites in his gut, which means his digestion doesn't work properly, which also affects the brain.
Look, there are heaps of big words like undermethylation, gut dysbiosis, pyrolureiria that our doctor likes to use, and I'm sure he understands them properly. I actually do understand them when I read the literature, but I'll be blowed if I can report it back so that anyone else can understand it too.
I like to know what I can do about it all. So here's my list of things we have to do for him.
1. Gluten-free and casein (milk protein) -free diet. (His faulty gut wall can't digest these proteins and they end up floating around the body, acting like morphine. So the poor little fellow was continually drugged out by the very food he was eating.)
2. Digestive enzymes with every meal. These assist in digestion and help the nutrients in the food to be broken down and absorbed properly.
3. A completely foul mega multivitamin dose every day. It's mixed up specially to increase zinc uptake. (Apparently it's not as simple as just giving zinc drops every day.) This is a nightmare to give him. He won't swallow a capsule and the stuff tastes worse than bile. I have to mix it in a masking fluid and then try to hide that in vegemite, tomato sauce and juice throughout the day. Even then, he doesn't get the full dose.
4. More Omega-6 oils. Thankfully these work through the skin. Trying to get more medicine into his mouth would be a disaster. Every night I rub the oil from two evening primrose capsules into his body.
5. Avoid high copper foods (mushrooms, dried fruits with sulphur, oysters). That's easy. He won't eat most of them anyway!
6. Avoid foods with artificial preservatives and colourings in them. Again, he can't eat most of these anyway because of the gluten and dairy.
7. Filter drinking water (too much copper in Sydney Water apparently), avoid long baths and no swimming in chlorinated pools. The copper can get in through the skin.
8. Increase his intake of proteins throughout the day. This is hard. He'll only eat ham or sausages (gluten free of course!).
It's a lot to do and it can get very wearing preparing his food and making sure he never sneaks doughnuts, like he tried to today! However, I know that the difference in him since we began all of this is incredible.
My doctor is part of the Mindd Foundation who are promoting this approach to treating autism, ADD, dyspraxia, dsylexia and other related conditions. If you are interested in knowing more about their medical approach, click here.
1. Bright Eyes is low in zinc and high in copper. The normal body ratio is 1:1. His is 2:7. This stops his brain working properly, and has an impact on his gut as well.
2. He has parasites in his gut, which means his digestion doesn't work properly, which also affects the brain.
Look, there are heaps of big words like undermethylation, gut dysbiosis, pyrolureiria that our doctor likes to use, and I'm sure he understands them properly. I actually do understand them when I read the literature, but I'll be blowed if I can report it back so that anyone else can understand it too.
I like to know what I can do about it all. So here's my list of things we have to do for him.
1. Gluten-free and casein (milk protein) -free diet. (His faulty gut wall can't digest these proteins and they end up floating around the body, acting like morphine. So the poor little fellow was continually drugged out by the very food he was eating.)
2. Digestive enzymes with every meal. These assist in digestion and help the nutrients in the food to be broken down and absorbed properly.
3. A completely foul mega multivitamin dose every day. It's mixed up specially to increase zinc uptake. (Apparently it's not as simple as just giving zinc drops every day.) This is a nightmare to give him. He won't swallow a capsule and the stuff tastes worse than bile. I have to mix it in a masking fluid and then try to hide that in vegemite, tomato sauce and juice throughout the day. Even then, he doesn't get the full dose.
4. More Omega-6 oils. Thankfully these work through the skin. Trying to get more medicine into his mouth would be a disaster. Every night I rub the oil from two evening primrose capsules into his body.
5. Avoid high copper foods (mushrooms, dried fruits with sulphur, oysters). That's easy. He won't eat most of them anyway!
6. Avoid foods with artificial preservatives and colourings in them. Again, he can't eat most of these anyway because of the gluten and dairy.
7. Filter drinking water (too much copper in Sydney Water apparently), avoid long baths and no swimming in chlorinated pools. The copper can get in through the skin.
8. Increase his intake of proteins throughout the day. This is hard. He'll only eat ham or sausages (gluten free of course!).
It's a lot to do and it can get very wearing preparing his food and making sure he never sneaks doughnuts, like he tried to today! However, I know that the difference in him since we began all of this is incredible.
My doctor is part of the Mindd Foundation who are promoting this approach to treating autism, ADD, dyspraxia, dsylexia and other related conditions. If you are interested in knowing more about their medical approach, click here.
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