"Being close to an individual with autism is about celebrating life. It's about finding beauty in small things. It's about overcoming society's stigmas. it's about learning fresh ways to look at things. It does not have to be about tragedy, or pain, or loss." Jasmine Lee O'Neill
Wise words. I would love an opportunity to be able to see the world just for 5 minutes through Robin's eyes. It would be seeing the world from an entirely new dimension. I know he notices things we don't even see and stores away things in his memory that we have filtered out subconsciously and never even notice. We see but don't see. Our brains are wired to filter out information, sights, sounds that aren't necessary. If we took in everything around us we would be overwhelmed.
This is what it is like for some autistic children. Absorbing sights, sounds, smells, data like a sponge, where do you put it all? How do you process it all? This is often the reason why children like Robin deliberately take time out. Take themselves away to somewhere quiet, a favourite hidey hole or den. Another mechanism for blocking out some of this overwhelming amount of information might be to rock, flick things or in Robin's case roll. He's a great roller. Robin can gently roll his way from his bedroom to another room to fetch a book and roll back again, or he can leap into rolls like an acrobat, with us wincing at the thought of a potential broken neck, depending on his mood.
Tight focusing on a toy, holding it every close and looking at it sideways is something that Robin has done since he was very small. I asked him once why? Did it make the toy look different, better? He said, 'it makes it big.' I think it's his way of blocking out excess information allowing hin to concentrate on his toy. Robin is very big on detail. The slightest difference, however small, is glaringly obvious to him. He's a great spotter. He can pick people out in a crowd or in a school photo straightaway.
In the classroom Robin often gets up and moves around quietly at the back of the room, picking things up and 'fiddling'. To begin with his teacher thought that it was because he was not engaged in the topic, but soon realised that he was taking in everything but it was easier for him to do that if he could move around, and by giving his fingers something abstract to do it allowed his brain to focus in on what the teacher was saying.
I often wonder if Robin could see the world through my eyes for 5 minutes, whether he might find it a bit like seeing in black and white when you are used to colour. He might be astounded how much he suddenly understood about people's body language and tone, but I wonder whether he would think that a good enough swap for the detail and texture that he gets from seeing the world as he does? I might see a tree and think it's beautiful. Robin might see a tree and could probably tell you how many birds are in it, that there's a Safeway bag caught on a branch, that there are more bright green leaves than dark green leaves, that there are 26 apples on it, 3 are half-eaten, 6 more on the ground underneath.
So next time you are out, why not spend a couple of minutes to see how much you can actually see if you really look. Try and see beyond the tree, the flower, the view. What else is there? There's so much more there than you think.
Wednesday, February 27, 2008
Monday, February 25, 2008
Surviving The Tantrums
Question: You are shopping, you turn into an aisle and see a child screaming, crying, kicking and generally throwing a full blown tantrum. The Mother is clearly embarrassed and is trying to calm/control her child, wheel her trolley and keep her handbag from falling off her shoulder. It's a disaster. What do you do? What are you thinking?
I have been on both sides of that equation and if I am completely honest before Robin came into our lives if someone had presented me with that situation and I had to answer those questions truthfully, firstly I probably wouldn't have done anything - Englishness? Wanting to avoid embarrassing situations? Fearful of being rebuffed?. Secondly I would have assumed that the child was probably overindulged or spoilt, maybe a lack of discipline and boundaries at home.
I can look back now and wince at myself, but that's because I have been on the other side and it's not a nice place to be.
From very early on Robin disliked to be held or touched unless he wanted to be. Until he was 3 we didn't know why. It's quite upsetting as your instinct as a Mother is to hold and reassure a crying baby or toddler, but in Robin's case that could sometimes make the situation worse. It was quite a problem crossing roads when he was a bit older as he might not want to hold your hand and you would have to hold his wrist crossing the road while he was twisting away from you, but basically we respected the fact that Robin didn't like to be touched and felt we were being given something pretty special if he did come and sit on our lap.
Loud noises, sirens, bells, balloons were all sources of terror and could send Robin into a complete panic. The inability to process our explanations of why something could not happen now or something he had seen in the shop wasn't going to come home were constant sources of disappointment and tears which could go to a full tantrum. Later after help with our Speech Pathologist we started to speak each other's language and we could deflect this with better use of language and short sentences.
There were several occasions where Robin has had a wowzer of a tantrum in public. I remember two particularly. One was after we had been to the circus. I hadn't been sure whether it was going to be a good thing, there were so many variables. Loud noises, clowns with painted faces it could all potentially go horribly wrong, but my Father really wanted to take the children and Robin was quite certain he wanted to go.
We saw the bouncing castle on the way in and Robin was very excited by it. We were running late and needed to get our seats so we quickly moved along. The circus went well, although it was really hot under the big top. Dad got the children a drink and some glow sticks and it all seemed fine. I did notice that during the trapeze act Robin was not watching the show but rather the play of lights on the big top from the glitter ball and wondered whether he was getting a bit maxed out with all the input.
As we were leaving Robin saw the bouncing castle again, pointed and made it very clear he wanted a go. It had been stifling in the tent, it was hot outside, it was time to go home. I tried to explain to Robin that they had had enough treats for one day, it was time to go home. He wasn't having a bar of it. Once he realised that it really was time to go home he fell apart. He fell on the grass crying and refused to move. He was small enough at that age that I could just about pick him up. He clawed at the grass and was wriggling and kicking in my arms and started screaming. People started to look and stare. I kept telling him that I was sorry, but we had to go home. We managed to get to the car but the tantrum was still at full rage. I half expected someone to come up and accost me for trying to abduct a small child.
Finally we got him in the car but he kept undoing his seat belt. I sat in the driver's seat and said, 'Robin, we have to go home. We will sit here until you stop. You need to calm down.' Finally he stopped undoing his seatbelt and I started to drive home. On the way there he took his shoes off and threw them into the front of the car followed by anything he could get his hands on. There wasn't anywhere for me to pull over so I kept going. Once we got home he went to his room and started throwing everything into the corridor. I thought it best to just let him get it all out of his system and let him do it. Dad went to his room and cried. He had never seen Robin throw a full blown tantrum before. Eventually once he had calmed down Robin came out of his room and said "I'm sorry Mum. I'm a naughty boy.' At that point it was Ok for a hug and an explanation of why we had had to come home and he could accept both.
The other major tantrum that I remember was in the supermarket. Robin had spotted a car in one of the aisles and wanted it. It's not something I had ever encouraged or we would have to buy one every time we went in. I said, 'no, Robin. Maybe we could get one for your birthday?' Off he went. I was almost through my shop and really didn't have the time to just leave and come back at another time, so I thought I would just press on. He was screaming and crying, people were staring and some were tutting. I managed to get to the checkout, paid for the shopping, trying to hold Robin on my hip. Most people in the queues were staring and making comments, when an old lady came up to me and said, 'I think you are doing a great job, would you like me to help you with your things to the car?' It was very humbling and I burst into tears. It was such an accepting and kind thing to do.
Now I NEVER make judgements when I see children throwing a wobbler, and although Robin is older now and more able to understand that you can't just have everything you want when you want it, I never get stressed or embarrassed now if he does. It's Robin, we love him, and other people can go hang!
Survival Tips:
1. Try and stay calm. If you get upset or anxious it will only make things worse.
2. If you can remove yourself and your child away from the situation to somewhere quiet.
3. Remember it really doesn't matter what other people think.
4. Although it seems like forever at the time, usually tantrums don't last that long.
I have been on both sides of that equation and if I am completely honest before Robin came into our lives if someone had presented me with that situation and I had to answer those questions truthfully, firstly I probably wouldn't have done anything - Englishness? Wanting to avoid embarrassing situations? Fearful of being rebuffed?. Secondly I would have assumed that the child was probably overindulged or spoilt, maybe a lack of discipline and boundaries at home.
I can look back now and wince at myself, but that's because I have been on the other side and it's not a nice place to be.
From very early on Robin disliked to be held or touched unless he wanted to be. Until he was 3 we didn't know why. It's quite upsetting as your instinct as a Mother is to hold and reassure a crying baby or toddler, but in Robin's case that could sometimes make the situation worse. It was quite a problem crossing roads when he was a bit older as he might not want to hold your hand and you would have to hold his wrist crossing the road while he was twisting away from you, but basically we respected the fact that Robin didn't like to be touched and felt we were being given something pretty special if he did come and sit on our lap.
Loud noises, sirens, bells, balloons were all sources of terror and could send Robin into a complete panic. The inability to process our explanations of why something could not happen now or something he had seen in the shop wasn't going to come home were constant sources of disappointment and tears which could go to a full tantrum. Later after help with our Speech Pathologist we started to speak each other's language and we could deflect this with better use of language and short sentences.
There were several occasions where Robin has had a wowzer of a tantrum in public. I remember two particularly. One was after we had been to the circus. I hadn't been sure whether it was going to be a good thing, there were so many variables. Loud noises, clowns with painted faces it could all potentially go horribly wrong, but my Father really wanted to take the children and Robin was quite certain he wanted to go.
We saw the bouncing castle on the way in and Robin was very excited by it. We were running late and needed to get our seats so we quickly moved along. The circus went well, although it was really hot under the big top. Dad got the children a drink and some glow sticks and it all seemed fine. I did notice that during the trapeze act Robin was not watching the show but rather the play of lights on the big top from the glitter ball and wondered whether he was getting a bit maxed out with all the input.
As we were leaving Robin saw the bouncing castle again, pointed and made it very clear he wanted a go. It had been stifling in the tent, it was hot outside, it was time to go home. I tried to explain to Robin that they had had enough treats for one day, it was time to go home. He wasn't having a bar of it. Once he realised that it really was time to go home he fell apart. He fell on the grass crying and refused to move. He was small enough at that age that I could just about pick him up. He clawed at the grass and was wriggling and kicking in my arms and started screaming. People started to look and stare. I kept telling him that I was sorry, but we had to go home. We managed to get to the car but the tantrum was still at full rage. I half expected someone to come up and accost me for trying to abduct a small child.
Finally we got him in the car but he kept undoing his seat belt. I sat in the driver's seat and said, 'Robin, we have to go home. We will sit here until you stop. You need to calm down.' Finally he stopped undoing his seatbelt and I started to drive home. On the way there he took his shoes off and threw them into the front of the car followed by anything he could get his hands on. There wasn't anywhere for me to pull over so I kept going. Once we got home he went to his room and started throwing everything into the corridor. I thought it best to just let him get it all out of his system and let him do it. Dad went to his room and cried. He had never seen Robin throw a full blown tantrum before. Eventually once he had calmed down Robin came out of his room and said "I'm sorry Mum. I'm a naughty boy.' At that point it was Ok for a hug and an explanation of why we had had to come home and he could accept both.
The other major tantrum that I remember was in the supermarket. Robin had spotted a car in one of the aisles and wanted it. It's not something I had ever encouraged or we would have to buy one every time we went in. I said, 'no, Robin. Maybe we could get one for your birthday?' Off he went. I was almost through my shop and really didn't have the time to just leave and come back at another time, so I thought I would just press on. He was screaming and crying, people were staring and some were tutting. I managed to get to the checkout, paid for the shopping, trying to hold Robin on my hip. Most people in the queues were staring and making comments, when an old lady came up to me and said, 'I think you are doing a great job, would you like me to help you with your things to the car?' It was very humbling and I burst into tears. It was such an accepting and kind thing to do.
Now I NEVER make judgements when I see children throwing a wobbler, and although Robin is older now and more able to understand that you can't just have everything you want when you want it, I never get stressed or embarrassed now if he does. It's Robin, we love him, and other people can go hang!
Survival Tips:
1. Try and stay calm. If you get upset or anxious it will only make things worse.
2. If you can remove yourself and your child away from the situation to somewhere quiet.
3. Remember it really doesn't matter what other people think.
4. Although it seems like forever at the time, usually tantrums don't last that long.
Wednesday, February 20, 2008
Through The Eyes of Aliens
This is the title of a book by Jasmine Lee O'Neill and one of the first books I read from the Autism Victoria library after Robin was diagnosed. It's a great insight into her inner life and was the start of an education for me that will probably last a lifetime. Initially my response was to gather every bit of information that had ever been written on the subject. I devoured books by Temple Grandin, and was amazed at how she had adapted her needs as a child to making the ordeal of cattle going to slaughter so humane. I read everything and anything. This was my way of dealing with what was happening in our lives. The more I understood about this condition, the more I was going to be able to help our child.
It made me realise that Robin had effectively been dealing with a world where not only did he not speak the language, but the 'natives' sometimes could speak volumes without using any words at all! Lifting an eyebrow could alter the meaning of a whole sentence. What if you didn't notice that movement, or didn't relate it to the words? It must have been very difficult, and sometimes even now although he is 9 and is learning more about the nuances of language, his literalness will come through. 'You can say that again' - and he will. 'Cut it out' - and he might look for some scissors.
A classic one recently was my sister's friend had painted her a picture of Palm Cove, where we had just been on holiday. I had seen it but the children hadn't, I said, 'hey when you go into Auntie Karen's there's a new painting, tell me where it is.' My daughter came back and said, 'Palm Cove!' Later Robin came back and said, 'on the wall, opposite the mirror.' Now of course he was quite right. I hadn't defined the question. It's a constant learning for me to be very specific.
I have been taken to task by some Mothers with NT (or neuro typical) children of course, 'why do you want to 'label' your child?' The answer was very simple. We can't help Robin if we don't understand how he thinks and learn to speak his language, and in fact I think it was the best thing we ever did. Because Robin was diagnosed at such a young age, it meant that he got huge amounts of professional help from speech pathologists, OTs and physiotherapists all working together with us to catch up on speech, spatial awareness, endless things that we didn't realise Robin needed, before he started primary school.
By the time he was ready to start school we were armed to the teeth with reports, assessments all the things you need to get that prized creature for parents of children with special needs, an "aide". The process is very complex and we were told that we probably wouldn't get an aide with 'autism' listed as a condition, as it was too broad, better to concentrate of Robin's language difficulties. The school were very helpful and we spent a long time filling in the forms and checking that we had documentary backup for everything that went into the report.
Needless to say in true Robin form, when it came to his last speech assessment he cruised through it like a pro, totally eliminating any chance whatsoever of an aide through that particular route. We were so proud of him and how far he had come with his speech - and thought well if it comes to it we will have to pay for one ourselves. The phone call came through not long before Christmas to say that Robin had in fact been granted an aide for his start at school in February 2004. I burst into tears, I felt like we had won the lottery. Robin's aide has been a guide, friend, supporter and Robin's No. 1 fan at school. Thanks to her commitment and the fantastic teachers that he has had, now as a Year 4 student he is not only keeping up with his peers at school but beginning to shine in some areas.
Without a doubt that early diagnosis and intervention has helped Robin and ourselves to make his early start at school as easy as it could possibly have been. If we had just kept listening to the people who were telling us 'boys are different', we probably wouldn't have had any help until school. So the life lesson for me has been, if you are unsure of something, don't let other people dismiss your fears, get it checked out.
This is the title of a book by Jasmine Lee O'Neill and one of the first books I read from the Autism Victoria library after Robin was diagnosed. It's a great insight into her inner life and was the start of an education for me that will probably last a lifetime. Initially my response was to gather every bit of information that had ever been written on the subject. I devoured books by Temple Grandin, and was amazed at how she had adapted her needs as a child to making the ordeal of cattle going to slaughter so humane. I read everything and anything. This was my way of dealing with what was happening in our lives. The more I understood about this condition, the more I was going to be able to help our child.
It made me realise that Robin had effectively been dealing with a world where not only did he not speak the language, but the 'natives' sometimes could speak volumes without using any words at all! Lifting an eyebrow could alter the meaning of a whole sentence. What if you didn't notice that movement, or didn't relate it to the words? It must have been very difficult, and sometimes even now although he is 9 and is learning more about the nuances of language, his literalness will come through. 'You can say that again' - and he will. 'Cut it out' - and he might look for some scissors.
A classic one recently was my sister's friend had painted her a picture of Palm Cove, where we had just been on holiday. I had seen it but the children hadn't, I said, 'hey when you go into Auntie Karen's there's a new painting, tell me where it is.' My daughter came back and said, 'Palm Cove!' Later Robin came back and said, 'on the wall, opposite the mirror.' Now of course he was quite right. I hadn't defined the question. It's a constant learning for me to be very specific.
I have been taken to task by some Mothers with NT (or neuro typical) children of course, 'why do you want to 'label' your child?' The answer was very simple. We can't help Robin if we don't understand how he thinks and learn to speak his language, and in fact I think it was the best thing we ever did. Because Robin was diagnosed at such a young age, it meant that he got huge amounts of professional help from speech pathologists, OTs and physiotherapists all working together with us to catch up on speech, spatial awareness, endless things that we didn't realise Robin needed, before he started primary school.
By the time he was ready to start school we were armed to the teeth with reports, assessments all the things you need to get that prized creature for parents of children with special needs, an "aide". The process is very complex and we were told that we probably wouldn't get an aide with 'autism' listed as a condition, as it was too broad, better to concentrate of Robin's language difficulties. The school were very helpful and we spent a long time filling in the forms and checking that we had documentary backup for everything that went into the report.
Needless to say in true Robin form, when it came to his last speech assessment he cruised through it like a pro, totally eliminating any chance whatsoever of an aide through that particular route. We were so proud of him and how far he had come with his speech - and thought well if it comes to it we will have to pay for one ourselves. The phone call came through not long before Christmas to say that Robin had in fact been granted an aide for his start at school in February 2004. I burst into tears, I felt like we had won the lottery. Robin's aide has been a guide, friend, supporter and Robin's No. 1 fan at school. Thanks to her commitment and the fantastic teachers that he has had, now as a Year 4 student he is not only keeping up with his peers at school but beginning to shine in some areas.
Without a doubt that early diagnosis and intervention has helped Robin and ourselves to make his early start at school as easy as it could possibly have been. If we had just kept listening to the people who were telling us 'boys are different', we probably wouldn't have had any help until school. So the life lesson for me has been, if you are unsure of something, don't let other people dismiss your fears, get it checked out.
Tuesday, February 19, 2008
On The Spectrum
D- Day Diagnosis Day
It had been a long journey, but there we were after all the tests, reviews, interviews, observations, we were sitting opposite Professor Tonge waiting for news that could transform our son's life. Were we ready? No. Despite everything on our 3 year journey to this moment, we weren't ready.
It all started when Robin was born really. He used to cry and cry. You could change his nappy, feed him, burp him but he just never seemed comfortable. He would arch away from you not snuggle in like most babies, including our daughter had done. 'Never mind', we thought, 'boys are different.'
He was. I remember talking to the Maternal Child nurse when Robin was about 18 months old. He would babble and not try even the simplest words. 'Don't worry', I was told, 'boys are different. You are comparing him to your daughter - she's older and a girl.' The worries persisted until the start of 3 year old kinder. Robin didn't seem to play in a group with the other children. He was very possessive over the trains and certain toys. He would still babble. His kinder teacher suggested that maybe we get his hearing checked as he didn't seem to be interested in listening at story time.
This was the beginning of meeting our wonderful son. We had his ears checked, all fine. The ENT specialist said that given the fact that he had had a few ear infections during his infancy, perhaps he had missed a few steps in his verbals skills and recommended we see a Speech Pathologist. The first of our saviours.
When the results of the tests came through we were horrified to find that Robin's understanding was far lower than his speech. What we thought had been 'naughty' behaviour. Not paying attention, not completing small tasks, ignoring requests, hitting, all became clear. We felt awful. The Speech Pathologist gave us some great advice. Break up requests into simple, short sentences. Don't overload him with speech. Give him time to compute what you have said and react.
It transformed our lives. It felt as if we had found the Rosetta Stone. Finally we were able to communicate with our son. We learned to say 'Yes, later' when he said 'park.' Before we had been saying things like, 'Not right now, Mummy's got to take Holly to school, we can go later.' Robin would compute 'not' and throw a major tantrum. (More about those in a later post.)
So here we were starting to learn a common language with our son. Then the Speech Pathologist suggested that we see a Paediatrician. There's more? Yes, much more. She recommended that we have Robin checked over by the Autism team over in Clayton. We were stunned. Autism? Rainman? That wasn't Robin. Ok, he didn't communicate well, but autistic, surely not?
So here we were and yes he was. D-Day. Our son is a high-functioning autistic. In later posts I will tell you how we as a family dealt with the diagnosis. I for one felt relief. I had been told by a leading expert that my son had autism. Now I knew that I could begin to learn his language and hope that he would be interested enough to learn ours.
It had been a long journey, but there we were after all the tests, reviews, interviews, observations, we were sitting opposite Professor Tonge waiting for news that could transform our son's life. Were we ready? No. Despite everything on our 3 year journey to this moment, we weren't ready.
It all started when Robin was born really. He used to cry and cry. You could change his nappy, feed him, burp him but he just never seemed comfortable. He would arch away from you not snuggle in like most babies, including our daughter had done. 'Never mind', we thought, 'boys are different.'
He was. I remember talking to the Maternal Child nurse when Robin was about 18 months old. He would babble and not try even the simplest words. 'Don't worry', I was told, 'boys are different. You are comparing him to your daughter - she's older and a girl.' The worries persisted until the start of 3 year old kinder. Robin didn't seem to play in a group with the other children. He was very possessive over the trains and certain toys. He would still babble. His kinder teacher suggested that maybe we get his hearing checked as he didn't seem to be interested in listening at story time.
This was the beginning of meeting our wonderful son. We had his ears checked, all fine. The ENT specialist said that given the fact that he had had a few ear infections during his infancy, perhaps he had missed a few steps in his verbals skills and recommended we see a Speech Pathologist. The first of our saviours.
When the results of the tests came through we were horrified to find that Robin's understanding was far lower than his speech. What we thought had been 'naughty' behaviour. Not paying attention, not completing small tasks, ignoring requests, hitting, all became clear. We felt awful. The Speech Pathologist gave us some great advice. Break up requests into simple, short sentences. Don't overload him with speech. Give him time to compute what you have said and react.
It transformed our lives. It felt as if we had found the Rosetta Stone. Finally we were able to communicate with our son. We learned to say 'Yes, later' when he said 'park.' Before we had been saying things like, 'Not right now, Mummy's got to take Holly to school, we can go later.' Robin would compute 'not' and throw a major tantrum. (More about those in a later post.)
So here we were starting to learn a common language with our son. Then the Speech Pathologist suggested that we see a Paediatrician. There's more? Yes, much more. She recommended that we have Robin checked over by the Autism team over in Clayton. We were stunned. Autism? Rainman? That wasn't Robin. Ok, he didn't communicate well, but autistic, surely not?
So here we were and yes he was. D-Day. Our son is a high-functioning autistic. In later posts I will tell you how we as a family dealt with the diagnosis. I for one felt relief. I had been told by a leading expert that my son had autism. Now I knew that I could begin to learn his language and hope that he would be interested enough to learn ours.
Is it Explosious?
This was a title of the very first blog I did on VA On The Bay, my blog for mainly work-related issues. It is an expression my son uses if he in nervous about something. He is On The Spectrum, he is a high-functioning autistic boy and totally gorgeous.
I am going to blog about his story, the achievements he makes (and he has already come a long way) as he goes through his life and perhaps give some encouragement to parents and families who find that autism comes into their life. It's a very positive story, it's explosious, but it needn't be scary.
I am going to blog about his story, the achievements he makes (and he has already come a long way) as he goes through his life and perhaps give some encouragement to parents and families who find that autism comes into their life. It's a very positive story, it's explosious, but it needn't be scary.
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