Thursday, May 29, 2008
Kisses
Up until this week, I have never had a kiss from my little boy. But that has changed and today we were playing 'kisses on cheeks' together. Gorgeous!
Wednesday, May 28, 2008
'Can I play with you guys?'
This is what Bright Eyes yelled enthusiastically to his sister and her friend as he ran outside this afternoon. What a delight! I don't think he's ever said that before.
He keeps asking me "What does that mean? What does this mean?" When it gets too much for me, I push it back at him with an obvious one like, "What does book mean?" He looks at me and grins. "Something to read!"
I'm vaguely interested in kinesiology and its therapeutic value for autism. Might look into it.
He keeps asking me "What does that mean? What does this mean?" When it gets too much for me, I push it back at him with an obvious one like, "What does book mean?" He looks at me and grins. "Something to read!"
I'm vaguely interested in kinesiology and its therapeutic value for autism. Might look into it.
Wednesday, May 21, 2008
Today
Preschool was much better today.
Apparently he settled himself, spent time with the children instead of apart from them, sat in a new spot at lunch and commented on the fact that he had the same sandwich as one of the other kids, and had no objections to doing activities and taking part. Yay! This is great.
Chat chat chat
With his constant rubbish-talk, I've gone to ignoring and humming when he tries to engage me in it. If he asks a real question or makes a statement or tries to look me in the face, I respond straight away.
It seems to have made a difference today. After a few unsuccessful attempts at making me answer questions about a TV show, he gave up and went elsewhere.
Try again tomorrow.
Apparently he settled himself, spent time with the children instead of apart from them, sat in a new spot at lunch and commented on the fact that he had the same sandwich as one of the other kids, and had no objections to doing activities and taking part. Yay! This is great.
Chat chat chat
With his constant rubbish-talk, I've gone to ignoring and humming when he tries to engage me in it. If he asks a real question or makes a statement or tries to look me in the face, I respond straight away.
It seems to have made a difference today. After a few unsuccessful attempts at making me answer questions about a TV show, he gave up and went elsewhere.
Try again tomorrow.
Tuesday, May 20, 2008
Talking
My dear sweet boy just WILL NOT SHUT UP!
Boy, he can talk the back leg off a donkey. Most of it is rubbish, sadly. Occasionally we have a good exchange.
A lot of it today is "What does this mean? What does that mean?" He does seem to understand the answers, so I'm happy about that, but honestly... it just doesn't stop. I'm going crazy quickly!
Boy, he can talk the back leg off a donkey. Most of it is rubbish, sadly. Occasionally we have a good exchange.
A lot of it today is "What does this mean? What does that mean?" He does seem to understand the answers, so I'm happy about that, but honestly... it just doesn't stop. I'm going crazy quickly!
Sunday, May 18, 2008
A dialogue about autism. Broken or not?
I belong to a yahoo group about parenting. Something that came up recently about whether it's good or not to have a diagnosis for a child with probable autism. I wrote that I thought a diagnosis was helpful. Here's some of the ensuing conversation.
Questioner: “I understand where you're coming from; and if that's what it *takes*, then fine. But did you need a diagnosis for that? Wasn't it obvious that he thought differently?”
Me: Yes, it was incredibly obvious! That’s not what I needed the diagnosis for. I needed it because I didn’t understand just how his thinking was different.
Having the words ‘autistic spectrum disorder’ gave me a handle to go and do some research and find out exactly what the characteristics of ASD. For example: he screamed a whole lot for a year or more. So I needed to know what was behind that. Is it a characteristic of ASD that he needs to do something with his voice, or is it that he not handling the uncertainty and thus is expressing his anxiety? (FYI it’s the anxiety).
Is that not true of every single person on the planet? No two people's brains function in the same way. I think a lot of parents assume their kids will "think" like them/act like them/BE like them. But they aren't little "us's"---they are completely and amazingly NOT "us's". (that's hard to figure out: us's? uses? usses? grammatically, it would be we's or wees Making up plural words here. )If we look at our children as different, from the beginning...and forever, we can understand them *all* better and work on finding a way through with a better attitude.I mean: it's *not* just aspie/autistic kids that should get this gift! All children have brains that function in different ways, and certainly not all need diagnoses!
Absolutely. No one is the same. You just have to do one of those personality tests to see that you can quantify the obvious – In the Myers Briggs scheme I’m an INFJ – my husband is ENFP. It’s helpful to us to be able to understand each other better so that we don’t fall into the easy pit of thinking his messiness is laziness, or my organisational skills are arrogance.
My daughter is very different from me. She needs heaps more friends around than I do. She hates dancing, whereas I would have given my right arm to do ballet lessons (although on second thought that wouldn’t have done my ballet skills much good...)
However, with all our differences though, there are basic similarities in human child development. Eg. We expect every child to walk (eventually), unless they are missing their feet or have some muscular difficulty etc. We expect every child to use the toilet eventually unless they have some bladder issue etc.
The things that are missing from the development in autistic children are the things we don’t even think about like – responding to and being able to use: facial signals, tone of voice, gestures, following gaze to find something, following a point. Most of the non-verbal relationship skills that babies under 18 months develop automatically, autistic kids lack. Why do they lack them? Because for whatever reason, their brains are not connecting in normal ways.
My biggest issue with the aspie/autistic stuff is how much is being tried to FIX these kids. They are not broken. They just Are Who They Are. We can choose to work WITH them or we can choose to try to FIX them. Working WITH them will have such sweeter benefits!
There are a few things to say. Firstly, numbers of ASD children has increased greatly in the last 20 years, such that they now say that 1 in 160 children is ‘on the spectrum’. Of course, levels of intensity vary greatly. So someone has to ask the question: why is this? And how can we stop the increase?
Secondly, if you want to use the word ‘broken’, I think they are broken – in the same way that if your kid had a problem walking at the age of 10, you could consider something ‘broken’. ‘Broken’ only refers to not being the same as the majority – the same as what we would consider normal/usual.
I’m not saying there’s anything bad or wrong with being broken. Just that whatever it is is not working as well as one would expect, given the regular state of the world. And if you can do something about it, why wouldn’t you?
Why do we do surgery on club feet and hare lips? Why do we find ways to balance body chemistry of children with diabetes? Because ‘fixing’ these things helps the children who have them work in the way most others work and relate to others better.
Autism looks a little bit different because you can’t see a physical difference, and it’s not life-threatening in general. But I would argue that relationships are the key to a happy and fulfilled and joyful life. And if someone is lacking those basic relationship skills because their brain has not had the opportunity to get ‘wired’ in that way, why wouldn’t you want to do something about it if you could?
The limited research that has been done on autistic (mostly Aspergers) adults (three major studies) shows that only about 10-20% are able to hold down a regular job. Less than 10% have a friend or intimate relationship. Less than 6% live independently. Over 80% suffer depression and other mental health issues. It’s not a great scenario for an autistic kid. But if you can do something to help that kid live a happy and joyful and relationship filled life, why wouldn’t you?
Thirdly, frankly, my child did need ‘fixing’. There are different ways ASD affects people, but when my child was diagnosed at 3, he had screamed all day every day for months. He couldn’t go in or out of a doorway without screaming. Noone could look at him without him screaming. He couldn’t understand a simple concept like “we’ll have that later”. He couldn’t answer a question or make a simple choice without screaming. He didn’t have one child he liked or played with. He could speak, but he would only recite scripts from TV shows. He talked about Thomas the Tank Engine all day (when he wasn’t screaming). He was visibly anxious and unhappy. He needed help – more help than I knew how to give.
One simple thing was changing his diet to exclude gluten and casein. Within three weeks he was happier, brighter, more connected. It made a big difference. Starting RDI therapy made another big difference. He still has a long way to go to building his relationship skills, but he’s well on the way and he’s absolutely gorgeous and adorable. I love him to bits.
Questioner: “I understand where you're coming from; and if that's what it *takes*, then fine. But did you need a diagnosis for that? Wasn't it obvious that he thought differently?”
Me: Yes, it was incredibly obvious! That’s not what I needed the diagnosis for. I needed it because I didn’t understand just how his thinking was different.
Having the words ‘autistic spectrum disorder’ gave me a handle to go and do some research and find out exactly what the characteristics of ASD. For example: he screamed a whole lot for a year or more. So I needed to know what was behind that. Is it a characteristic of ASD that he needs to do something with his voice, or is it that he not handling the uncertainty and thus is expressing his anxiety? (FYI it’s the anxiety).
Is that not true of every single person on the planet? No two people's brains function in the same way. I think a lot of parents assume their kids will "think" like them/act like them/BE like them. But they aren't little "us's"---they are completely and amazingly NOT "us's". (that's hard to figure out: us's? uses? usses?
Absolutely. No one is the same. You just have to do one of those personality tests to see that you can quantify the obvious – In the Myers Briggs scheme I’m an INFJ – my husband is ENFP. It’s helpful to us to be able to understand each other better so that we don’t fall into the easy pit of thinking his messiness is laziness, or my organisational skills are arrogance.
My daughter is very different from me. She needs heaps more friends around than I do. She hates dancing, whereas I would have given my right arm to do ballet lessons (although on second thought that wouldn’t have done my ballet skills much good...)
However, with all our differences though, there are basic similarities in human child development. Eg. We expect every child to walk (eventually), unless they are missing their feet or have some muscular difficulty etc. We expect every child to use the toilet eventually unless they have some bladder issue etc.
The things that are missing from the development in autistic children are the things we don’t even think about like – responding to and being able to use: facial signals, tone of voice, gestures, following gaze to find something, following a point. Most of the non-verbal relationship skills that babies under 18 months develop automatically, autistic kids lack. Why do they lack them? Because for whatever reason, their brains are not connecting in normal ways.
My biggest issue with the aspie/autistic stuff is how much is being tried to FIX these kids. They are not broken. They just Are Who They Are. We can choose to work WITH them or we can choose to try to FIX them. Working WITH them will have such sweeter benefits!
There are a few things to say. Firstly, numbers of ASD children has increased greatly in the last 20 years, such that they now say that 1 in 160 children is ‘on the spectrum’. Of course, levels of intensity vary greatly. So someone has to ask the question: why is this? And how can we stop the increase?
Secondly, if you want to use the word ‘broken’, I think they are broken – in the same way that if your kid had a problem walking at the age of 10, you could consider something ‘broken’. ‘Broken’ only refers to not being the same as the majority – the same as what we would consider normal/usual.
I’m not saying there’s anything bad or wrong with being broken. Just that whatever it is is not working as well as one would expect, given the regular state of the world. And if you can do something about it, why wouldn’t you?
Why do we do surgery on club feet and hare lips? Why do we find ways to balance body chemistry of children with diabetes? Because ‘fixing’ these things helps the children who have them work in the way most others work and relate to others better.
Autism looks a little bit different because you can’t see a physical difference, and it’s not life-threatening in general. But I would argue that relationships are the key to a happy and fulfilled and joyful life. And if someone is lacking those basic relationship skills because their brain has not had the opportunity to get ‘wired’ in that way, why wouldn’t you want to do something about it if you could?
The limited research that has been done on autistic (mostly Aspergers) adults (three major studies) shows that only about 10-20% are able to hold down a regular job. Less than 10% have a friend or intimate relationship. Less than 6% live independently. Over 80% suffer depression and other mental health issues. It’s not a great scenario for an autistic kid. But if you can do something to help that kid live a happy and joyful and relationship filled life, why wouldn’t you?
Thirdly, frankly, my child did need ‘fixing’. There are different ways ASD affects people, but when my child was diagnosed at 3, he had screamed all day every day for months. He couldn’t go in or out of a doorway without screaming. Noone could look at him without him screaming. He couldn’t understand a simple concept like “we’ll have that later”. He couldn’t answer a question or make a simple choice without screaming. He didn’t have one child he liked or played with. He could speak, but he would only recite scripts from TV shows. He talked about Thomas the Tank Engine all day (when he wasn’t screaming). He was visibly anxious and unhappy. He needed help – more help than I knew how to give.
One simple thing was changing his diet to exclude gluten and casein. Within three weeks he was happier, brighter, more connected. It made a big difference. Starting RDI therapy made another big difference. He still has a long way to go to building his relationship skills, but he’s well on the way and he’s absolutely gorgeous and adorable. I love him to bits.
Friday, May 16, 2008
Homeopath
I visited our homeopath today for our monthly to six-weekly checkup. After having seen a good jump forward followed by steady upward progress with the most recent remedy she has decided to change the medicine and try for another acceleration.
I'll pick up the remedy tomorrow and give it a go.
I'll pick up the remedy tomorrow and give it a go.
Thursday, May 15, 2008
Bed
Bedtimes have been a nightmare for Bright Eyes in the last few months. I say a nightmare for him. I really mean a nightmare for us.
Before daylight saving started last October, he would crack off to sleep about 7.30 pretty easily every night.
When the switch happened and 7.30 became 8.30, I could not get his body clock to move. In fact, he began to go to sleep later and later until for the last four or five months he's been getting to sleep between 10 and 11 every night.
He's been the proverbial camel in the tent in this period. First he wanted this, and we'd give it to him to keep the peace and allow us to enjoy our evening. Then he wanted that. And that, and this and that and a bit more of that over there.
With his bedtimes in a strange pattern, his little brother was not going to be sent to bed happily, and he also has been staying up and up and up. His day-naps have had something to do with this.
Anyway, to make a long story short, tonight was the first night of my new routine. At 8, we 'shut the house down' and pretended we were all going to sleep. There was nothing else interesting to look at or do. I lay in the room with both boys until they went to sleep (on the floor!). The baby took about 45 minutes. Bright Eyes took 1 hr and 45!
My aim is to spend the next three weeks or so making it comfortable and comforting to go to sleep in the dark with the door shut and gradually move myself out. I'll also be waking him up earlier so he's more tired at night.
Before daylight saving started last October, he would crack off to sleep about 7.30 pretty easily every night.
When the switch happened and 7.30 became 8.30, I could not get his body clock to move. In fact, he began to go to sleep later and later until for the last four or five months he's been getting to sleep between 10 and 11 every night.
He's been the proverbial camel in the tent in this period. First he wanted this, and we'd give it to him to keep the peace and allow us to enjoy our evening. Then he wanted that. And that, and this and that and a bit more of that over there.
With his bedtimes in a strange pattern, his little brother was not going to be sent to bed happily, and he also has been staying up and up and up. His day-naps have had something to do with this.
Anyway, to make a long story short, tonight was the first night of my new routine. At 8, we 'shut the house down' and pretended we were all going to sleep. There was nothing else interesting to look at or do. I lay in the room with both boys until they went to sleep (on the floor!). The baby took about 45 minutes. Bright Eyes took 1 hr and 45!
My aim is to spend the next three weeks or so making it comfortable and comforting to go to sleep in the dark with the door shut and gradually move myself out. I'll also be waking him up earlier so he's more tired at night.
Wednesday, May 14, 2008
Preschool
Happily, Bright Eyes went off to preschool with no hiccups this morning - and apparently had a great day.
He's being quite helpful when he's motivated to be in a task. eg. if he wants a drink, he'll get out the juice and the cup for me.
He seems to have taken a step up in language and understanding today. He was literally 'bright eyed' all afternoon. He was ultra-keen to talk on the phone to his grandma. Lovely!
He's being quite helpful when he's motivated to be in a task. eg. if he wants a drink, he'll get out the juice and the cup for me.
He seems to have taken a step up in language and understanding today. He was literally 'bright eyed' all afternoon. He was ultra-keen to talk on the phone to his grandma. Lovely!
Tuesday, May 13, 2008
Carrots
Yes, Bright Eyes actually ate some microscopic pieces of carrot tonight. Probably the first vegetable he has eaten in 3 years. It's a cause for mild rejoicing.
Of course, there was a down-side - it was on a regular piece of pizza. But tomorrow night there will be GF/CF pizza on the table for him ... with carrots!!!
Of course, there was a down-side - it was on a regular piece of pizza. But tomorrow night there will be GF/CF pizza on the table for him ... with carrots!!!
Monday, May 12, 2008
But on a good day...
... this is more what you get. Here he is with his new skates on. Notice he's holding on pretty tight! I've just got myself a pair so we should be able to put them on together.
On a bad day...
Saturday, May 10, 2008
Today...
...having an autistic son is incredibly, incredibly depressing. It's far easier to put him in front of the DVD than to interact with him.
Thursday, May 8, 2008
Prayer updates
I sent this out yesterday to our group of prayer supporters.
Dear gorgeous amazing friends and family who pray for Bright Eyes,
It’s been a while between prayer updates. One reason is that I managed to give myself RSI from... no, not sport or anything sensible... but knitting! I’m now able to type a little more, but this will be short!
I asked you to pray for his relationship with his sister. The day after I sent the email out, he stopped yelling at her and hasn’t done it since. It’s definitely improved their rapport! Thanks to God. Unfortunately things with his brother are still not fabulous, but I do notice less physical bullying and more pleasant playing in general.
This month I’m asking you to pray for the following (neatly packaged into three R’s. Even if you don’t get the RDI lingo, God knows, so just say the words and he’ll get it! (: )
- Both husband and I keep having to refocus on our RDI objectives. It’s an ongoing challenge for us. Pray that we’ll be creative and persevere every day in guiding Bright Eyes.
- Bright Eyes needs to develop more resilience in things that we want him to do.
- We are working on developing more relationship through our facial expressions. Pray that he’ll ‘be with us’ and connect using his face.
Thanks guys. Your prayers really do have effect. We certainly appreciate it.
Tuesday, May 6, 2008
Back to non-verbals
It's a bit of a cycle. We start out being non-verbal with Bright Eyes to combat his scripting and static behaviours. He improves dramatically in just a few days, and then it seems easier to go back to language with him. Over time, he reverts back to the scripts and we find ourselves going crazy again. We ring our consultant. She says, "Go non-verbal", so we do, and he improves... etc etc.
The best advice I can give anyone with an autistic child is to stop talking! Focus on facial expressions, gestures and tone. It really works!
The best advice I can give anyone with an autistic child is to stop talking! Focus on facial expressions, gestures and tone. It really works!
Friday, May 2, 2008
Having fun
Back briefly... my arms are improving.
Bright Eyes has been loving his new roller skates. I bought them with some for his sister as well, so the two of them are connecting over stumbles, trips and fall-overs. It's great fun.
He's improving in his recognition of facial expressions - that's what we're working on in RDI. We have nice little exchanges of glance and meaning. It's still a bit 'over the top' but the subtleties will come.
Bright Eyes has been loving his new roller skates. I bought them with some for his sister as well, so the two of them are connecting over stumbles, trips and fall-overs. It's great fun.
He's improving in his recognition of facial expressions - that's what we're working on in RDI. We have nice little exchanges of glance and meaning. It's still a bit 'over the top' but the subtleties will come.
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