After waiting almost two years, we finally had our evaluation from the Speech Pathologist. She was very good, and officially diagnosed him as being 18 months behind where he should be. But she also realised that the speech was not the only issue, and sent us back to the paediatrician to evaluate him with regard to ASD. She was willing to start speech sessions, but wanted to hold off until a full diagnosis of his condition could be established, as this would effect what therapies would work best.
We went back to the Paediatrician who performed some assessment test with him. It had some name, but I really can't remember what it was now. I know it involved my child, one parent (his dad), and the doctor in the room, and two or three more assessing people, plus me in the next room, observing through a viewing window. It was all very interesting, and nerve racking at the same time. There was a lot of looking at books, and playing with toys, and generally messing about. After the assessment, the assessors went away, and we went home, and then went back a few days later.
When we returned for our follow up appointment, in April 2005, Michael was officially diagnosed as being High Functioning on the Autism Spectrum.
This news turned our lives upside down, and challenged everything we thought we knew about raising children. Because of course we had so much experience with our one older child (who of course was perfect, and has always remained so!). Everything that worked for our first child, seemed to dismally fail for our second. Now we had a reason, and a way to move forward.
Monday 31 October 2011
Wednesday 26 October 2011
Starting Preschool
The beginning of 2005, when Michael started preschool, was a very hard time. He still didn't have an official diagnosis, so we had no proof of what we were asking. His preschool teacher was quite unsupportive of us as well, which really didn't help matters. I remember at one of our initial meetings with her, offering the suggestion to help her form a connection, to just count with him. Didn't matter what, but I knew that he was so into counting, and could happily do it for hours. Unfortunately, she totally misunderstood me, and her only comment was "we don't teach maths at preschool". I was quite dumbfounded, and very disappointed. I am sorry to say that our relationship didn't improve over the year, and I was very glad to get out of her classroom!
I remember one issue we still had was his toileting. Now he was sort of trained. He was dry at night, and he generally had complete control of when, where and what he did. But he would choose not to use the toilet at preschool! It could have been a sensory thing, or something else, but the consequences where that we had many accidents at school. Every time he had an accident, I would be called to come and clean him up. I was constantly at the school. One exasperating day, the teacher turned to me and said "will you just fix your son". I was extremely hurt by this at the time. Didn't she think I'd been trying? Did she think I enjoyed coming up to the school every day just to help him change his pants?
I'm not sure what would have happened at this point, if we hadn't finally managed to get an official diagnosis. But thankfully, it was around now that we finally got to see a wonderful Speech Therapist who helped us to go to the right people, to get that magic piece of paper.
I remember one issue we still had was his toileting. Now he was sort of trained. He was dry at night, and he generally had complete control of when, where and what he did. But he would choose not to use the toilet at preschool! It could have been a sensory thing, or something else, but the consequences where that we had many accidents at school. Every time he had an accident, I would be called to come and clean him up. I was constantly at the school. One exasperating day, the teacher turned to me and said "will you just fix your son". I was extremely hurt by this at the time. Didn't she think I'd been trying? Did she think I enjoyed coming up to the school every day just to help him change his pants?
I'm not sure what would have happened at this point, if we hadn't finally managed to get an official diagnosis. But thankfully, it was around now that we finally got to see a wonderful Speech Therapist who helped us to go to the right people, to get that magic piece of paper.
Kindergarten
In 2004 Michael started kindergarten. This was rather difficult, but the place where we went was lovely, and the teachers very understanding. One issue was that he wasn't completely toilet trained at this point, so we had to negotiate nappy changes and toileting issues. Because of their rating, they were not able to assist in the nappy change. It was rather difficult, & I used to have to pop in most days to change his nappy. Not the best thing to do with a child who has separation anxieties.
It became very obvious this year that he was far behind socially. He wouldn't engage with the other children, instead playing by himself. He didn't join in for the group activities, especially singing and quiet carpet time things, although he did enjoy the stories, and listened in his way. He was a master at all the jigsaws, and had them all done in the first few weeks. His fine motor skills started more clearly letting him down as well. His pencil holding, using scissors, painting, all this wasn't quite on a par with his peers.
I think he did enjoy this year, and his teacher and fellow students seemed happy for him to be there, as he was. It was a very caring kindy, and they did their best towards him, especially as we had no official diagnosis at this stage, but everyday we were becoming more certain that we would get a diagnosis eventually.
All this year we were on a waiting list for the speech therapist and paediatrician. We enrolled him in Preschool for 2005, and still hadn't had our appointments. It wasn't until early 2005 that we eventually found some real answers.
It became very obvious this year that he was far behind socially. He wouldn't engage with the other children, instead playing by himself. He didn't join in for the group activities, especially singing and quiet carpet time things, although he did enjoy the stories, and listened in his way. He was a master at all the jigsaws, and had them all done in the first few weeks. His fine motor skills started more clearly letting him down as well. His pencil holding, using scissors, painting, all this wasn't quite on a par with his peers.
I think he did enjoy this year, and his teacher and fellow students seemed happy for him to be there, as he was. It was a very caring kindy, and they did their best towards him, especially as we had no official diagnosis at this stage, but everyday we were becoming more certain that we would get a diagnosis eventually.
All this year we were on a waiting list for the speech therapist and paediatrician. We enrolled him in Preschool for 2005, and still hadn't had our appointments. It wasn't until early 2005 that we eventually found some real answers.
Tuesday 25 October 2011
The 'A' Word
So now his speech is starting to improve slowly, but other social things are really suffering. We pull out of kinder gym, because he just hates it! Won't cooperate, cries and complains, and doesn't fit in with the other children. We go to a playgroup, but we eventually stop going there as well. Michael is just unhappy, doesn't want to join in, has trouble sharing, hates the singing and reading times. The difference between him and other children is becoming quite marked.
It is at this time that we first come across that word. Autism.
I don't know about anyone else, but my understanding of what autism was is very different to what I understand now. Before, I thought a child with autism was someone who didn't talk, didn't want to associate with anyone, didn't even try to interact. To put it bluntly, a child who could walk and eat, but had no other real brain function!! That's how it was portrayed, when I looked at it at all. With this image, I was adamant that my son did NOT have such a thing. But then I looked at it some more, and realised that my understanding of autism was pitiful to say the least.
Autism is actually a spectrum. The correct term for it is Autism Spectrum Disorder(ASD). And this spectrum is very very long, ranging from low functioning, to high functioning. It includes some with learning difficulties, and some who have advanced knowledge. Some children can be verbal, others non-verbal. Some have sensory issues, which again can wide and varied. There seems to be no end to the possibilities of how ASD presents itself. It is, in fact, very hard to pinpoint exactly what it is. There are no blood tests, gene tests, or any other physical test that can diagnose ASD. It's a subjective mind and behaviour based diagnosis.
So, between three and five years of age, this is what we began to seek a diagnosis, so that we would then know what we were facing, and hopefully be able to know how to help our boy.
It is at this time that we first come across that word. Autism.
I don't know about anyone else, but my understanding of what autism was is very different to what I understand now. Before, I thought a child with autism was someone who didn't talk, didn't want to associate with anyone, didn't even try to interact. To put it bluntly, a child who could walk and eat, but had no other real brain function!! That's how it was portrayed, when I looked at it at all. With this image, I was adamant that my son did NOT have such a thing. But then I looked at it some more, and realised that my understanding of autism was pitiful to say the least.
Autism is actually a spectrum. The correct term for it is Autism Spectrum Disorder(ASD). And this spectrum is very very long, ranging from low functioning, to high functioning. It includes some with learning difficulties, and some who have advanced knowledge. Some children can be verbal, others non-verbal. Some have sensory issues, which again can wide and varied. There seems to be no end to the possibilities of how ASD presents itself. It is, in fact, very hard to pinpoint exactly what it is. There are no blood tests, gene tests, or any other physical test that can diagnose ASD. It's a subjective mind and behaviour based diagnosis.
So, between three and five years of age, this is what we began to seek a diagnosis, so that we would then know what we were facing, and hopefully be able to know how to help our boy.
Sunday 23 October 2011
Speech Delay
When Michael was about 18 months, was about when we first realised that he was way behind, and we needed help. At this time, the most obvious lack was with his speech, so that's where we started. We went to the GP, who sent us to the Paediatrician, who sent us to the Speech Pathologist. We were a bit short of funds at this time, so we were relying on the public system. There was a few months wait to get into the Speech Pathologist, so it must have been close to his 2nd birthday when we were finally seen.
The first thing the speechie did (or was it the paediatrician? can't remember now) was send him to get his hearing checked. Most easily assessed reason for speech delay. This took two visits. He must have been around three, because I remember they just put him down for the "co-operative" hearing test, without even bothering to ask us what would be best! Needless to say, he didn't co-operate, which necessitated the making of another appointment to give him the very young, unable to co-operate test. Through this they found that his ears could hear fine, although there may have been some sensitivity to the high and low frequencies. This, we were to discover, was a first indication of sensory issues.
The result of the hearing test allowed us to continue onto the speech pathologist, who at this time, officially diagnosed him with speech delay. The first of many diagnosis. As, at this time, there was quite a wait for regular sessions with a speech pathologist, I was offered a course called "It Takes Two Too Talk". This was basically a course for the parents, to teach them how to teach their children. I did find this very useful, and used a lot of it to help my son. Although now, the main thing I remember, is that I needed to lower my own level of speech, to just above his, to help him advance. That is, when he wasn't speaking, I say one word. When he was saying one word, I say two. When he is saying two words, I speak in short sentences. When he has short sentences, I say two sentences. This did work, and although it was slow, I did see some progress. I have found the principal of teaching him just above his level to be useful in many other areas of his life and learning as well. I will always appreciate attending that course.
The first thing the speechie did (or was it the paediatrician? can't remember now) was send him to get his hearing checked. Most easily assessed reason for speech delay. This took two visits. He must have been around three, because I remember they just put him down for the "co-operative" hearing test, without even bothering to ask us what would be best! Needless to say, he didn't co-operate, which necessitated the making of another appointment to give him the very young, unable to co-operate test. Through this they found that his ears could hear fine, although there may have been some sensitivity to the high and low frequencies. This, we were to discover, was a first indication of sensory issues.
The result of the hearing test allowed us to continue onto the speech pathologist, who at this time, officially diagnosed him with speech delay. The first of many diagnosis. As, at this time, there was quite a wait for regular sessions with a speech pathologist, I was offered a course called "It Takes Two Too Talk". This was basically a course for the parents, to teach them how to teach their children. I did find this very useful, and used a lot of it to help my son. Although now, the main thing I remember, is that I needed to lower my own level of speech, to just above his, to help him advance. That is, when he wasn't speaking, I say one word. When he was saying one word, I say two. When he is saying two words, I speak in short sentences. When he has short sentences, I say two sentences. This did work, and although it was slow, I did see some progress. I have found the principal of teaching him just above his level to be useful in many other areas of his life and learning as well. I will always appreciate attending that course.
Monday 17 October 2011
Second Year
It was during Michael's second year that we really began to get worried, and realise something wasn't right. Physically, he was fine. He rolled over, crawled, sat, stood and walked at all the right times. There was some fine motor skills that possibly should have developed more, but they weren't as obvious then. The two things that become obvious at this time, was his speech delay, and his social delay.
His first words were numbers, being able to count to over 100 before 18 months. He never got the numbers wrong, and was even able to to simple addition at this age as well. The problem was, that numbers were his only words for a long time. There was no mum or dad, or drink or bread, or any other words that should have been coming. Eventually he did say other words. Thomas (the tank engine), Bob (the builder), and eventually, by around two, I think he was starting to say mum and dad. But it was a very long time coming. I had so many people at this time saying things like "don't worry, he has an older sister to speak for him, he'll talk when he's ready", or "...boys are always slower to talk than girls. He'll be fine." So many people saying there was no problem, and not to worry, but I think I knew something wasn't right.
His social delay wasn't quite so easy to spot to the casual observer. A normal childs development is something like :
It was during this second year that we first approached a professional for advice.
His first words were numbers, being able to count to over 100 before 18 months. He never got the numbers wrong, and was even able to to simple addition at this age as well. The problem was, that numbers were his only words for a long time. There was no mum or dad, or drink or bread, or any other words that should have been coming. Eventually he did say other words. Thomas (the tank engine), Bob (the builder), and eventually, by around two, I think he was starting to say mum and dad. But it was a very long time coming. I had so many people at this time saying things like "don't worry, he has an older sister to speak for him, he'll talk when he's ready", or "...boys are always slower to talk than girls. He'll be fine." So many people saying there was no problem, and not to worry, but I think I knew something wasn't right.
His social delay wasn't quite so easy to spot to the casual observer. A normal childs development is something like :
- Mouthing toys
- Holding toys
- Using toys
- Playing with toys
- Playing with toys next to others (parallel play)
- Playing with toys with others (turn taking) etc
It was during this second year that we first approached a professional for advice.
Sunday 16 October 2011
First Year
Michael was born in mid 2000. It wasn't the easiest of pregnancies. I was very close to getting gestational diabetes, and suffered a lot from heart burn and sickness throughout the duration. When he was born, he was a very large infant, weighing in at 10lb 8oz. He was so big that he dislocated his shoulder on the way out, and the poor boy had to have it put back into place. He had the cord wrapped around his neck, and came out blue, but he did recover quite quickly.
I didn't realise it at the time, but this was the start of our journey together with autism. Getting to know my son, watching him grow. The slow anxiety that comes when things don't quite happen when they should. The reading, studying online, the endless parade of doctors, paediatricians, psychologist, speech therapists, occupational therapists. Then school, involving special ed teachers, guidance officers, teacher aides, teachers. Sometimes, the amount of people involved in our lives seems endless.
But back then, that was all ahead of me. For the first few months of his life, he was a wonderful baby. Quiet, happy and content. I had a very talkative, busy three year old at the time, so considered myself fortunate that I had an adaptable baby! Looking back, I realise now that he was too quiet. He didn't do anywhere near the amount of babbling, and two way interaction that a baby should do. He was always so content to be by himself, and play by himself. I still gave him lots of time and attention, but wasn't paying enough attention to what he wasn't doing.
I don't know if I would have been able to change anything, but I suppose I will always wonder what if...., it is after all, human nature to do so.
I didn't realise it at the time, but this was the start of our journey together with autism. Getting to know my son, watching him grow. The slow anxiety that comes when things don't quite happen when they should. The reading, studying online, the endless parade of doctors, paediatricians, psychologist, speech therapists, occupational therapists. Then school, involving special ed teachers, guidance officers, teacher aides, teachers. Sometimes, the amount of people involved in our lives seems endless.
But back then, that was all ahead of me. For the first few months of his life, he was a wonderful baby. Quiet, happy and content. I had a very talkative, busy three year old at the time, so considered myself fortunate that I had an adaptable baby! Looking back, I realise now that he was too quiet. He didn't do anywhere near the amount of babbling, and two way interaction that a baby should do. He was always so content to be by himself, and play by himself. I still gave him lots of time and attention, but wasn't paying enough attention to what he wasn't doing.
I don't know if I would have been able to change anything, but I suppose I will always wonder what if...., it is after all, human nature to do so.
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