In the months before diagnosis, as Bright Eyes' behaviour got worse and worse, it became really difficult dealing with him in public.
Ashamed as I am to say it, most of my worry was about what other people would think of me as a mother when he screamed, ran away and was generally disobedient and obstreperous.
I got over it after this incident though. We were on holidays and I had been taking him down in the pram every day to the local shop to get dinner for the evening. Once or twice I had bought a lollipop in that shop and on this particular day he wanted another one.
"Lollipop, lollipop, lollipop" he shouted at the top of his voice, as we stood in the queue waiting to pay.
"No lollipop today. Just going home," said I, calmly.
He escalated within about a minute to a full-blown tantrum with kicking legs, waving arms, red face and screams and shouts. "LOLLLLLIPOP! LOLLLIPOP!"
It went on for about 3 minutes while we stood at the counter. And then I heard the elderly gentleman behind me make a comment to the person next to him.
"Well, when my kids were little they were brought up on the end of a strap. They would never have even thought to make a fuss like that."
I could feel my blood pressure go up in a second - as if it wasn't high enough already. And to my shame, I turned to him and said, "I'll be your wife did most of the work with your children anyway!" before storming out the door with my shopping.
I'm not pleased with my response, but it did make me less worried about what people thought of me.
Friday, March 30, 2007
Things people say
Me (before diagnosis): "I'm a bit concerned about Bright Eyes. He doesn't seem to be speaking much compared to his sister at the same age."
Friend: "Really? He's probably just a bit slow. All kids develop at their own pace. You know Einstein didn't speak until he was like, six or something. Anyway, he's a boy. Boys are always slower than girls."
This is a conversation I had over and over again in the year or so before Bright Eyes was diagnosed.
There are a few reasons for this typical response which I got from most people I talked to.
1. They wanted to make me feel better.
2. No-one wants to acknowledge that any child might have something wrong with them because it feels uncomfortable and scary.
3. They didn't have time or interest to get involved in my worry.
4. They wouldn't know what to do if there really was a problem.
Number 1 is the nicest reason, and I'm sure it was behind the vast majority of responses I got to my concerns. But if I'm honest, I think I have been guilty of thinking numbers 2, 3 and 4 at various times in my own life.
However, even though reason number 1 comes out of kind intentions, it basically shuts down the person who is expressing their concerns. For more than a year, I was really really concerned about Bright Eyes, but I found hardly anyone willing to listen or to acknowledge that there might be a problem, so keen were they to make me feel better about it.
I have personally learned from this. If I hear a parent express worry about their child now, I ask questions about it.
"How long have you been worried about it? What do you think you might do about it? What would ease your mind about it?" And I encourage them to take the child to a paediatrician who will listen to them and take them seriously.
Friend: "Really? He's probably just a bit slow. All kids develop at their own pace. You know Einstein didn't speak until he was like, six or something. Anyway, he's a boy. Boys are always slower than girls."
This is a conversation I had over and over again in the year or so before Bright Eyes was diagnosed.
There are a few reasons for this typical response which I got from most people I talked to.
1. They wanted to make me feel better.
2. No-one wants to acknowledge that any child might have something wrong with them because it feels uncomfortable and scary.
3. They didn't have time or interest to get involved in my worry.
4. They wouldn't know what to do if there really was a problem.
Number 1 is the nicest reason, and I'm sure it was behind the vast majority of responses I got to my concerns. But if I'm honest, I think I have been guilty of thinking numbers 2, 3 and 4 at various times in my own life.
However, even though reason number 1 comes out of kind intentions, it basically shuts down the person who is expressing their concerns. For more than a year, I was really really concerned about Bright Eyes, but I found hardly anyone willing to listen or to acknowledge that there might be a problem, so keen were they to make me feel better about it.
I have personally learned from this. If I hear a parent express worry about their child now, I ask questions about it.
"How long have you been worried about it? What do you think you might do about it? What would ease your mind about it?" And I encourage them to take the child to a paediatrician who will listen to them and take them seriously.
Finding some answers
Thank the heavenly Lord above for the wonderful gift of.... the internet!
I wasn't much of a net junkie before Bright Eyes' diagnosis, but now it's my first port of call for everything.
It only took a couple of weeks before I realised that Bright Eyes' treatment was going to be something I would have to handle myself.
I decided to do what the doctor had told me, so first off I rang the Autism Association, who were not particularly friendly, nor particularly keen to help me through what I should do next.
After that I went for the speech therapy. We went to some lovely sessions with a very sweet young lady who showed me how to do things like pictures and sign language and choice boards. "Show him a picture of the red t-shirt and the blue t-shirt and let him choose which one he wants," she said. It was too bad that he ran away screaming if presented with a choice. Besides, the thought of taking photographs of everything in his life, laminating and velcro-ing them, getting the right ones out at the right time, and then trying to stop him chewing and bending them just made me exhausted. I decided I'd come back to speech therapy.
In the midst of all of this, I went for a second opinion, on the urging of my father in law. The second paediatrician was a lovely lady who agreed wholeheartedly with the first paediatrician, adding this memorable phrase: "Well, he's got atrocious social skills,"* but, for another $200 or so, no additional advice on what to do to manage him, except to go to a psychologist specialising in ASD.
"He's really good at practical solutions for challenging behaviour," she said.
So with hope in my heart, I drove 75 minutes across the city for a two hour session. This turned out to be him talking at me for three quarters of the time, telling me all about autism and what autistic children typically do. But I had already done the research! I knew all of that. I wanted answers for my particular problems with my child.
His ineffectiveness** was proven to me when I went to leave with Bright Eyes (whom he had briefly looked at for about two minutes, and who then watched videos in his office for the two hours). But Bright Eyes found some steps and wouldn't get off them. He started to scream loudly and refused to come with me. After about 10 minutes of me trying hopelessly to get him to move, with the psychologist looking on, offering no help, I started to sing, "Let's walk together, let's walk together," whereupon Bright Eyes took my hand and came calmly with me to the car.
It was a depressing moment. I realised that I would have to be the one who found the answers and judged the treatments. I would have to go looking for real help that would actually work.
And so I turned to the net, obsessively reading any site I could call up that could give me some hints on the causes and the solutions for autism and ASD.
*I am being a little unfair perhaps... she said plenty more good things, but that comment was indelibly imprinted on my brain! It's true - he showed lots of atrocity in her office, but it's not what a loving, optimistic mother wants to hear unfortunately.
**I should add that this psychologist showed himself to be a man of great principle when he refused to accept my payment for his session because I wrote expressing my dissatisfaction with him.
I wasn't much of a net junkie before Bright Eyes' diagnosis, but now it's my first port of call for everything.
It only took a couple of weeks before I realised that Bright Eyes' treatment was going to be something I would have to handle myself.
I decided to do what the doctor had told me, so first off I rang the Autism Association, who were not particularly friendly, nor particularly keen to help me through what I should do next.
After that I went for the speech therapy. We went to some lovely sessions with a very sweet young lady who showed me how to do things like pictures and sign language and choice boards. "Show him a picture of the red t-shirt and the blue t-shirt and let him choose which one he wants," she said. It was too bad that he ran away screaming if presented with a choice. Besides, the thought of taking photographs of everything in his life, laminating and velcro-ing them, getting the right ones out at the right time, and then trying to stop him chewing and bending them just made me exhausted. I decided I'd come back to speech therapy.
In the midst of all of this, I went for a second opinion, on the urging of my father in law. The second paediatrician was a lovely lady who agreed wholeheartedly with the first paediatrician, adding this memorable phrase: "Well, he's got atrocious social skills,"* but, for another $200 or so, no additional advice on what to do to manage him, except to go to a psychologist specialising in ASD.
"He's really good at practical solutions for challenging behaviour," she said.
So with hope in my heart, I drove 75 minutes across the city for a two hour session. This turned out to be him talking at me for three quarters of the time, telling me all about autism and what autistic children typically do. But I had already done the research! I knew all of that. I wanted answers for my particular problems with my child.
His ineffectiveness** was proven to me when I went to leave with Bright Eyes (whom he had briefly looked at for about two minutes, and who then watched videos in his office for the two hours). But Bright Eyes found some steps and wouldn't get off them. He started to scream loudly and refused to come with me. After about 10 minutes of me trying hopelessly to get him to move, with the psychologist looking on, offering no help, I started to sing, "Let's walk together, let's walk together," whereupon Bright Eyes took my hand and came calmly with me to the car.
It was a depressing moment. I realised that I would have to be the one who found the answers and judged the treatments. I would have to go looking for real help that would actually work.
And so I turned to the net, obsessively reading any site I could call up that could give me some hints on the causes and the solutions for autism and ASD.
*I am being a little unfair perhaps... she said plenty more good things, but that comment was indelibly imprinted on my brain! It's true - he showed lots of atrocity in her office, but it's not what a loving, optimistic mother wants to hear unfortunately.
**I should add that this psychologist showed himself to be a man of great principle when he refused to accept my payment for his session because I wrote expressing my dissatisfaction with him.
Thanks... but what now?
The paediatrician was a nice enough man. He knew his stuff, and he made a good diagnosis. But that's pretty much where it ended.
My question was obviously, "well, what now?"
And he didn't have too many answers.
He said we should contact the Autism Association. He also said that speech therapy would help a lot. And then he did tell us that we'll need lots of support.
And apart from getting a detailed report about Bright Eyes's presenting symptoms and the basic diagnosis, that was basically it - for the lovely cost of $300*.
I felt a little ripped off - and I still do. If my child had been diagnosed with cancer, diabetes, or anything else that has mainstream tried and tested medical treatments, I would have been given a blow-by-blow description of what would happen next, what could possibly happen, what possible prognoses there were for the future.
The paediatrician could answer no questions about Bright Eyes' future. And he wasn't particularly interested in what kind of treatments there were out there. He was concerned about us, which was nice, but I was more interested in my son than myself at that stage!
I felt alone and floundering. What were we supposed to do now?
*At the beginning, costs associated with doctors and therapies used to shock me. Now I don't even blink if people start quoting four figures (of course it doesn't necessarily mean that I'll pay them though...) The word 'autism' is like the word 'wedding' in terms of its impact on cost prices.
My question was obviously, "well, what now?"
And he didn't have too many answers.
He said we should contact the Autism Association. He also said that speech therapy would help a lot. And then he did tell us that we'll need lots of support.
And apart from getting a detailed report about Bright Eyes's presenting symptoms and the basic diagnosis, that was basically it - for the lovely cost of $300*.
I felt a little ripped off - and I still do. If my child had been diagnosed with cancer, diabetes, or anything else that has mainstream tried and tested medical treatments, I would have been given a blow-by-blow description of what would happen next, what could possibly happen, what possible prognoses there were for the future.
The paediatrician could answer no questions about Bright Eyes' future. And he wasn't particularly interested in what kind of treatments there were out there. He was concerned about us, which was nice, but I was more interested in my son than myself at that stage!
I felt alone and floundering. What were we supposed to do now?
*At the beginning, costs associated with doctors and therapies used to shock me. Now I don't even blink if people start quoting four figures (of course it doesn't necessarily mean that I'll pay them though...) The word 'autism' is like the word 'wedding' in terms of its impact on cost prices.
Tuesday, March 27, 2007
Getting Help II
We went to the developmental paediatrician in September 2006.
Bright Eyes was in fine, typical form. He ran in to the consulting room and found the trains in the toybox right away. After a while he got bored so he started on the switches and buttons in the room. Then he went through all the animals in the animal box.
He yelled loudly and frequently throughout the hour or so we were in there, gradually increasing in intensity and volume. If the doctor wanted to look at him, he yelled and screamed and ran away. I was able to calm him for some of the time by holding him on my knee and singing, but it was clear - this was a child with some serious issues!
Things I told the doctor about:
His scripting language - he could recite songs, books and lines from TV programs off by heart.
His inability to make choices. All the speech therapy books I read said, "Get your child to choose between two things". Ha! If I offered him a choice of anything - red t-shirt and blue t-shirt, juice or water, biscuit or fruit - he would scream loudly and run away.
His inability to answer questions. He was completely floored by any question - even something requiring only a yes or no answer. As for "What's your name?" or "How old are you?" or "What's your favourite toy?"... forget it.
His inability to talk to other people. If any friends and even some family tried to talk to Bright Eyes he would scream or yell, turn away or run away.
As well as: Problems with transitions, picky eating, refusal to wear anything but solid colours and t-shirt material, inability to toilet train, refusal to get into the bath, addiction to music and TV, holding two items in his hands constantly, addiction to Thomas the Tank Engine, extreme sensitivity to other people's anger towards him, apparent inability to feel pain, glassy eyes, inability to follow simple instructions (eg. get your shoes)... la la la la la
After a tiring and noisy hour-long consultation, the doctor said, "What do you think it might be?" I said, "ASD". He said, "I think you're right. With some ADHD added in."
And at the age of three and one month, Bright Eyes had an official diagnosis.
Bright Eyes was in fine, typical form. He ran in to the consulting room and found the trains in the toybox right away. After a while he got bored so he started on the switches and buttons in the room. Then he went through all the animals in the animal box.
He yelled loudly and frequently throughout the hour or so we were in there, gradually increasing in intensity and volume. If the doctor wanted to look at him, he yelled and screamed and ran away. I was able to calm him for some of the time by holding him on my knee and singing, but it was clear - this was a child with some serious issues!
Things I told the doctor about:
His scripting language - he could recite songs, books and lines from TV programs off by heart.
His inability to make choices. All the speech therapy books I read said, "Get your child to choose between two things". Ha! If I offered him a choice of anything - red t-shirt and blue t-shirt, juice or water, biscuit or fruit - he would scream loudly and run away.
His inability to answer questions. He was completely floored by any question - even something requiring only a yes or no answer. As for "What's your name?" or "How old are you?" or "What's your favourite toy?"... forget it.
His inability to talk to other people. If any friends and even some family tried to talk to Bright Eyes he would scream or yell, turn away or run away.
As well as: Problems with transitions, picky eating, refusal to wear anything but solid colours and t-shirt material, inability to toilet train, refusal to get into the bath, addiction to music and TV, holding two items in his hands constantly, addiction to Thomas the Tank Engine, extreme sensitivity to other people's anger towards him, apparent inability to feel pain, glassy eyes, inability to follow simple instructions (eg. get your shoes)... la la la la la
After a tiring and noisy hour-long consultation, the doctor said, "What do you think it might be?" I said, "ASD". He said, "I think you're right. With some ADHD added in."
And at the age of three and one month, Bright Eyes had an official diagnosis.
Unofficial diagnosis
In the three months between making the paediatrician's appointment and getting to it, I found out what Bright Eyes' problem really was.
And the person who told me was a preschool teacher - over the telephone.
My husband had just been offered a job in Mittagong, starting in the new year. With experience in booking children into preschool, I thought I should do something about putting Bright Eyes in once we got there.
So I rang the local community preschool.
"I'd like to book my three year old in for next year. But I think he's going to need some special care - he's a little bit eccentric," I told the director.
"Eccentric? What does he do?" she asked me.
"He yells a lot. His speech is delayed. He only really speaks in 'slogans' or scripts. He has a lot of trouble transitioning from activity to activity and he is obsessed with trains. He really only likes to play by himself," I said. "He's seeing a paediatrician soon just to check there's nothing really wrong."
"I don't want to be rude," she said, "but I think he might have an autistic spectrum disorder."
I can still feel the flump of my stomach turning over as she said it. It was a complete shock. In one conversation my son had gone from being a 'bit eccentric' to having a serious diagnosible condition.*
For a few weeks I thought it wasn't true. I started looking it up on the net and found various pages which kind of described Bright Eyes, but not really.
However, in the course of the next three weeks, a much respected friend with experience with small children and a child psychologist said the same thing to me. In three weeks, I had three unofficial diagnoses - all for the same condition.
I looked into it further and by about the sixth week, I was sure that we were waiting for a diagnosis of autistic spectrum disorder.
*By the way, I think the preschool teacher said the right thing. I was never angry with her for saying it, rather I was grateful (a little later on). She has shown absolute goodness, kindness and professional zeal in all of her dealings with us and I couldn't be happier that she is his teacher this year.
And the person who told me was a preschool teacher - over the telephone.
My husband had just been offered a job in Mittagong, starting in the new year. With experience in booking children into preschool, I thought I should do something about putting Bright Eyes in once we got there.
So I rang the local community preschool.
"I'd like to book my three year old in for next year. But I think he's going to need some special care - he's a little bit eccentric," I told the director.
"Eccentric? What does he do?" she asked me.
"He yells a lot. His speech is delayed. He only really speaks in 'slogans' or scripts. He has a lot of trouble transitioning from activity to activity and he is obsessed with trains. He really only likes to play by himself," I said. "He's seeing a paediatrician soon just to check there's nothing really wrong."
"I don't want to be rude," she said, "but I think he might have an autistic spectrum disorder."
I can still feel the flump of my stomach turning over as she said it. It was a complete shock. In one conversation my son had gone from being a 'bit eccentric' to having a serious diagnosible condition.*
For a few weeks I thought it wasn't true. I started looking it up on the net and found various pages which kind of described Bright Eyes, but not really.
However, in the course of the next three weeks, a much respected friend with experience with small children and a child psychologist said the same thing to me. In three weeks, I had three unofficial diagnoses - all for the same condition.
I looked into it further and by about the sixth week, I was sure that we were waiting for a diagnosis of autistic spectrum disorder.
*By the way, I think the preschool teacher said the right thing. I was never angry with her for saying it, rather I was grateful (a little later on). She has shown absolute goodness, kindness and professional zeal in all of her dealings with us and I couldn't be happier that she is his teacher this year.
Getting Help I
By the time Bright Eyes was two I was ready to get some help.
Everything I did was scattered over the period of about 12 months, and was complicated by the fact that I became pregnant and gave birth in the middle of it all.
At the beginning of this stage I just thought his problem was delayed speech, so I rang the local health centre and booked in for some speech therapy. They brought him in, had a look at him and said I should join the 'tiny talkers' program they had. I went to one session, took home the literature and tried to do everything they said, but nothing really seemed to work.
I went to the GP a little later. "I'm concerned about his speech. Do you think he could see a paediatrician?" He was a nice GP and wanted to save me some money. "I think the paediatrician would just refer you to a speechie - so why don't we try that first," he said.
I duly went to six sessions with a lovely lady who tried some things, said that he had lots of language but was not using it appropriately and in not so many words said that I wasn't tough enough with him. He did seem to improve a little from the therapy, but it was expensive and I was heavily pregnant so we didn't continue going. I thought I would just try to keep doing what she had showed me.
Things started to get worse. When the new baby was born Bright Eyes threw tantrum after tantrum all day long for hours at a time. He would run away, crawl under the furniture, kick and scream and resist anything I tried to do. I couldn't take him anywhere because he was uncontrollable. I even resorted to buying a 'Supernanny' book and tried to implement some 'naughty spots' because I thought he was just a very difficult little boy.
But again, nothing worked.
As the year went on and Bright Eyes approached the age of three, it was becoming more and more apparent that he was not just 'picking it up' and things were not improving.
My GP father in law said to me, "I think you should get this child to a developmental paediatrician. He's got some problems."
So I went down to my GP and said, "Please write a referral to a developmental paediatrician." She did so, and I made the appointment. Unfortunately the next one wasn't available for another three months, so I had some waiting to do.
Everything I did was scattered over the period of about 12 months, and was complicated by the fact that I became pregnant and gave birth in the middle of it all.
At the beginning of this stage I just thought his problem was delayed speech, so I rang the local health centre and booked in for some speech therapy. They brought him in, had a look at him and said I should join the 'tiny talkers' program they had. I went to one session, took home the literature and tried to do everything they said, but nothing really seemed to work.
I went to the GP a little later. "I'm concerned about his speech. Do you think he could see a paediatrician?" He was a nice GP and wanted to save me some money. "I think the paediatrician would just refer you to a speechie - so why don't we try that first," he said.
I duly went to six sessions with a lovely lady who tried some things, said that he had lots of language but was not using it appropriately and in not so many words said that I wasn't tough enough with him. He did seem to improve a little from the therapy, but it was expensive and I was heavily pregnant so we didn't continue going. I thought I would just try to keep doing what she had showed me.
Things started to get worse. When the new baby was born Bright Eyes threw tantrum after tantrum all day long for hours at a time. He would run away, crawl under the furniture, kick and scream and resist anything I tried to do. I couldn't take him anywhere because he was uncontrollable. I even resorted to buying a 'Supernanny' book and tried to implement some 'naughty spots' because I thought he was just a very difficult little boy.
But again, nothing worked.
As the year went on and Bright Eyes approached the age of three, it was becoming more and more apparent that he was not just 'picking it up' and things were not improving.
My GP father in law said to me, "I think you should get this child to a developmental paediatrician. He's got some problems."
So I went down to my GP and said, "Please write a referral to a developmental paediatrician." She did so, and I made the appointment. Unfortunately the next one wasn't available for another three months, so I had some waiting to do.
Saturday, March 24, 2007
The second year: signs emerging
The second year of Bright Eyes' life was where we started to notice that he was not developing normally.
He had an absolute obsession with pressing buttons. When we arrived at my parents house, he would run straight through the door, ignoring the grandparents, heading for the video, TV, remotes, light switches, phones, computer, fan, oven (!!) and any other switches he could find.
For a long time I tried the tactics that had worked with my daughter from the age of 8 months: Say "Bright Eyes, No" in a deep growl. Walk up, remove his hand, take him away from the situation and distract with something else.
Ha! It didn't work the first time, and it never ever worked after that. If he was removed happily, he'd head straight back for the switch and keep presing. If he wasn't removed happily he would throw an enormous tantrum for 1/2 hour and then head straight back for the switch and keep pressing.
After a lot of trial, I realised it was hopeless and didn't worry about the switches in our house. For a while I made a half-hearted effort in other people's places to show that I was a respectable mother, but most of the time I just picked things up out of his reach or tried to ignore it.
He looked past people and avoided their gaze. In fact, he got very upset if most people looked at him, spoke to him or in any way acknowledged him. Again, I made efforts to get him to look at family and friends to say hello and goodbye, but after months of failure my efforts were mostly token and for show so that others wouldn't think I was a hopeless or irresponsible parent.
He didn't talk. Not only that, he didn't seem to be understanding things either. Other children about the same age seemed to be able to 'get' concepts like 'Mummy's got a baby in her tummy', or 'we're going to church now' or 'this is a birthday party and we're having cake'. Bright Eyes seemed oblivious to most things around him. He lived only for the immediate moment.
He couldn't make transitions. Every day is made up of transitions from one activity to another. "Now we're eating breakfast. It's finished, so we now go and get dressed. Now it's play time outside, now we have to go inside..." Every transition Bright Eyes made, he got hysterical. Moving from simple activity to simple activity was distressing and difficult for him, even though he had done each thing over and over again every day.
He ran away. All the time, wherever we went, as far as he could go and extremely quickly. From being a baby who hardly moved, he suddenly found some speed once he began to walk and my days of carrying on involved adult conversations in unfenced areas were over. We lost him onto main roads twice and spent two 15 minute periods looking for him when he disappeared on the communal property where we lived. (He was behind the bushes next to the fence, and in another family's unlocked upstairs apartment.)
He hardly felt any pain. I was proud of my tough little fella. Unlike his big sister who was always 'more sensitive' (nice words for being a complete sook), if Bright Eyes fell over, he just got up and kept on going. Most other children would have been screaming with some of the knocks he took, but he hardly seemed to notice. "He should be a football player" I said proudly. Little did i know that feeling no pain is a common feature of autistic children.
All of these things made me start asking questions. I just didn't feel right about his development. But at the same time there seemed to be lots of normal things too. He was affectionate with us. He adored his big sister and would play with her as much as he could. He seemed to eat well enough (although he was incredibly picky - more on this in later posts) and he was growing. Also, he was hardly ever sick and I breast-fed him until he was nearly 2.
He had an absolute obsession with pressing buttons. When we arrived at my parents house, he would run straight through the door, ignoring the grandparents, heading for the video, TV, remotes, light switches, phones, computer, fan, oven (!!) and any other switches he could find.
For a long time I tried the tactics that had worked with my daughter from the age of 8 months: Say "Bright Eyes, No" in a deep growl. Walk up, remove his hand, take him away from the situation and distract with something else.
Ha! It didn't work the first time, and it never ever worked after that. If he was removed happily, he'd head straight back for the switch and keep presing. If he wasn't removed happily he would throw an enormous tantrum for 1/2 hour and then head straight back for the switch and keep pressing.
After a lot of trial, I realised it was hopeless and didn't worry about the switches in our house. For a while I made a half-hearted effort in other people's places to show that I was a respectable mother, but most of the time I just picked things up out of his reach or tried to ignore it.
He looked past people and avoided their gaze. In fact, he got very upset if most people looked at him, spoke to him or in any way acknowledged him. Again, I made efforts to get him to look at family and friends to say hello and goodbye, but after months of failure my efforts were mostly token and for show so that others wouldn't think I was a hopeless or irresponsible parent.
He didn't talk. Not only that, he didn't seem to be understanding things either. Other children about the same age seemed to be able to 'get' concepts like 'Mummy's got a baby in her tummy', or 'we're going to church now' or 'this is a birthday party and we're having cake'. Bright Eyes seemed oblivious to most things around him. He lived only for the immediate moment.
He couldn't make transitions. Every day is made up of transitions from one activity to another. "Now we're eating breakfast. It's finished, so we now go and get dressed. Now it's play time outside, now we have to go inside..." Every transition Bright Eyes made, he got hysterical. Moving from simple activity to simple activity was distressing and difficult for him, even though he had done each thing over and over again every day.
He ran away. All the time, wherever we went, as far as he could go and extremely quickly. From being a baby who hardly moved, he suddenly found some speed once he began to walk and my days of carrying on involved adult conversations in unfenced areas were over. We lost him onto main roads twice and spent two 15 minute periods looking for him when he disappeared on the communal property where we lived. (He was behind the bushes next to the fence, and in another family's unlocked upstairs apartment.)
He hardly felt any pain. I was proud of my tough little fella. Unlike his big sister who was always 'more sensitive' (nice words for being a complete sook), if Bright Eyes fell over, he just got up and kept on going. Most other children would have been screaming with some of the knocks he took, but he hardly seemed to notice. "He should be a football player" I said proudly. Little did i know that feeling no pain is a common feature of autistic children.
All of these things made me start asking questions. I just didn't feel right about his development. But at the same time there seemed to be lots of normal things too. He was affectionate with us. He adored his big sister and would play with her as much as he could. He seemed to eat well enough (although he was incredibly picky - more on this in later posts) and he was growing. Also, he was hardly ever sick and I breast-fed him until he was nearly 2.
Friday, March 23, 2007
The first year
Bright Eyes was a very easy baby from the beginning. He was placid, easy to put to sleep and easy to look after. The only problem I really had was his waking every 3 hours for more food until the age of about 8 months. Because of all the milk he drank he was also the fattest baby I'd ever seen.
He smiled a lot, seemed to be aware and appeared normal. I did notice that if we tried to get his attention to play with him, he would often look away or appear not to notice us. I didn't think about it much at the time - perhaps he was tired, or he wasn't interested.
When he was six months we visited some babies (triplets) the same age. I was shocked at the difference between them. They were wriggly little things, investigating toys, trying to get around the room and intensely alert. By contrast Bright Eyes looked a little like a beached whale - he lay on his back and gurgled! I put it down to there being three of them to entertain each other.
At 1 Bright Eyes was starting to get grizzly and a little hard to get on with. On his first birthday he came out from his nap to find the room full of relatives and birthday cake. He wasn't happy and screamed solidly for about half an hour. We all had to not look at him so he would calm down.
As time went on, that became a bit of a habit: if he was the centre of attention, he tended to scream. He was happiest if people didn't talk to him and didn't look at him. He didn't seem to be able to handle it.
He had all his injections at the regular times and showed no signs of infection or discomfort. He kept breastfeeding madly but started to be a picky eater with his solids.
There were no obvious signs of autistic spectrum disorder in the first year. Looking back I can see some signs that things were heading in that direction, but for the most part Bright Eyes was a happy little chap and we were delighted to have him.
He smiled a lot, seemed to be aware and appeared normal. I did notice that if we tried to get his attention to play with him, he would often look away or appear not to notice us. I didn't think about it much at the time - perhaps he was tired, or he wasn't interested.
When he was six months we visited some babies (triplets) the same age. I was shocked at the difference between them. They were wriggly little things, investigating toys, trying to get around the room and intensely alert. By contrast Bright Eyes looked a little like a beached whale - he lay on his back and gurgled! I put it down to there being three of them to entertain each other.
At 1 Bright Eyes was starting to get grizzly and a little hard to get on with. On his first birthday he came out from his nap to find the room full of relatives and birthday cake. He wasn't happy and screamed solidly for about half an hour. We all had to not look at him so he would calm down.
As time went on, that became a bit of a habit: if he was the centre of attention, he tended to scream. He was happiest if people didn't talk to him and didn't look at him. He didn't seem to be able to handle it.
He had all his injections at the regular times and showed no signs of infection or discomfort. He kept breastfeeding madly but started to be a picky eater with his solids.
There were no obvious signs of autistic spectrum disorder in the first year. Looking back I can see some signs that things were heading in that direction, but for the most part Bright Eyes was a happy little chap and we were delighted to have him.
Sunday, March 18, 2007
Bright Eyes is born
I'll have to start from the beginning, for my own sake.
After my first child was born, I had a lot of trouble falling pregnant. After taking ovulation drugs for eight months and then suffering an ectopic pregnancy which left me with one tube, I was certain it would never happen. However, three months after the ectopic I tested positive - I was pregnant.
The pregnancy was fairly normal. The only things that were out of the ordinary were several severe headaches lasting 3 to 5 days each, but for no discernible cause. And the baby had a small cyst on his brain between 16 and 20 weeks or so.
At the time we were living in a very old, damp house. Looking back, I wonder if the headaches might have been due to something like residues from old lead paint. Or if the Clomid drugs I took had something to do with Bright Eyes development.
Autism and ASD are occuring at a massively high rate at the moment. People are calling it an epidemic. But no-one really knows what the actual causes are. Some say it's heavy metals poisoning from environmental buildups. Some say vaccinations. Some say it's because of build up of toxins from food passed down over various generations. It seems to run in families with histories of allergies and gut problems, which my side of the family has its fair share of!
Perhaps I was to blame because of what I ate, where I lived or what I did. If I was, I didn't know it. I was just an ordinary person, trying my best to be a healthy incubator and a good mother for my much-wanted baby boy.
He was born the day after his due date, big, chubby and healthy. He ate like there would be no more food tomorrow. He was calm and quiet. He was really the perfect baby.
After my first child was born, I had a lot of trouble falling pregnant. After taking ovulation drugs for eight months and then suffering an ectopic pregnancy which left me with one tube, I was certain it would never happen. However, three months after the ectopic I tested positive - I was pregnant.
The pregnancy was fairly normal. The only things that were out of the ordinary were several severe headaches lasting 3 to 5 days each, but for no discernible cause. And the baby had a small cyst on his brain between 16 and 20 weeks or so.
At the time we were living in a very old, damp house. Looking back, I wonder if the headaches might have been due to something like residues from old lead paint. Or if the Clomid drugs I took had something to do with Bright Eyes development.
Autism and ASD are occuring at a massively high rate at the moment. People are calling it an epidemic. But no-one really knows what the actual causes are. Some say it's heavy metals poisoning from environmental buildups. Some say vaccinations. Some say it's because of build up of toxins from food passed down over various generations. It seems to run in families with histories of allergies and gut problems, which my side of the family has its fair share of!
Perhaps I was to blame because of what I ate, where I lived or what I did. If I was, I didn't know it. I was just an ordinary person, trying my best to be a healthy incubator and a good mother for my much-wanted baby boy.
He was born the day after his due date, big, chubby and healthy. He ate like there would be no more food tomorrow. He was calm and quiet. He was really the perfect baby.
Saturday, March 17, 2007
Why another blog?
I was chatting to Bright Eyes' preschool teacher this week. She is in my humble opinion the very best preschool teacher running the very best preschool in the entire earth. We were talking about how he was going.
She said: "I am amazed at Bright Eyes. When I first met him last August I wondered what I was letting myself in for. He's a different child now. I can honestly say I have never seen a child make so much progress and change so much."
Her comment inspired this blog. I know that Bright Eyes has improved a lot in the seven months since his Autistic Spectrum Disorder diagnosis. But seeing progress with your own child can be like trying to watch him grow! It's so slow it's almost impossible to see unless you document it.
This will be my journal and my document of Bright Eyes' progress on his journey towards remediating his autism.
She said: "I am amazed at Bright Eyes. When I first met him last August I wondered what I was letting myself in for. He's a different child now. I can honestly say I have never seen a child make so much progress and change so much."
Her comment inspired this blog. I know that Bright Eyes has improved a lot in the seven months since his Autistic Spectrum Disorder diagnosis. But seeing progress with your own child can be like trying to watch him grow! It's so slow it's almost impossible to see unless you document it.
This will be my journal and my document of Bright Eyes' progress on his journey towards remediating his autism.
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