The winter of the social skills course was a harsh one, and so the last two of ten sessions were cancelled, due to bad weather. I felt a little relieved as it meant not having to break my working day, to collect my son from his school, so he could attend. It was about two months later that I received a phone call, from the woman who ran the course asking me, if I would like my son to attend the last two sessions he missed. Because he had come to learn of his autism, and because I think the process of leaving his class in the middle, of the day was causing him some distress I said no. I did appreciate the benefit he gained from this course, to this day what he learned is still serving him well. He is now a complete gentleman on meeting new people, even if he may seem a little protracted to the people he is offering his hand to, whilst saying " So good to meet you " I know he loves the response he gets for this, and it is probably one of the reasons he savours the opportunity to meet new people. Although he still can be selective about who he greets in this way.
It was from that point though, that I decided that if it was at all possible, any further learning support he received, should be conducted at the school. If he was offered something like the social skills course again, I would decline on his behalf, if it involved interrupting his school day. I have been contacted by several students, who are studying child physiology, and they have asked if they could use my son for part of their degree courses. To study his behaviour and give him certain tasks, which they can then observe and in turn document the results.To each of these students, after first ascertaining the content and the process of there research, I have said that the only way they can do this, is if they contact my sons school, and then visit the school to collect the data. Whilst I appreciate the importance of gathering data and continuing with research, I think the child's feelings should always be put first. As the information, is always gathered through play with the child, it is a harmless exercise, that is until the child feels like they are being singled out for some unknown reason.
I wonder some times what true focus the professionals have. There main concern should be the children's well being but I can not help noticing a fascination on their part for statistics and collecting data. There is no indication that autism is on the decline, in fact it is the opposite. Learning about the children with autism, what makes them feel, and think, and respond, happy, or sad, through play and interaction is not easily documented it is something that is felt. To often the observations of the professionals are clinical.
Thursday, 28 February 2013
Tuesday, 26 February 2013
Why am I different
Our lives were pretty much set, my life more or less revolved around my son's life. I had a flexible job I was able to be with him at the important times, dentist ,Dr's, and so on. I felt happy, content almost, that I had done the right thing by leaving his mother and there were no adverse affects on my son. It had been extremely hard at the outset but now it seemed we could start to really enjoy our new life. There was one thing niggling at my thoughts something I thought about from time to time but then put to the back of my mind.
When and how will I tell my son he has autism, or will I in fact have to tell him, will that be done by some one else? If I have to tell him? How do I go about it ? Up to age eight I don't think it really mattered but at nine and beyond his cognitive awareness was catching up with his peers. Often I have been told that my son is about two years behind in maturity. That being said: it is by no means a clear cut indication of his emotional depth or understanding. Over the years it has become increasingly obvious to me that you can not pigeon hole autistic children by simply saying they are behind because they can be both behind and ahead of there peers also their emotional view of the world is quite different from children without autism.
As it happened at age nine in the winter of 2011 I was asked if I would like my son to attend a ten week course in social skills. This would involve him, leaving his school on a Thursday afternoon around 1 pm to attend another primary school in the city. No transport was available so I had to break my working day to get him there. This whole process started to intrigue my son. Why, he was reasoning, I am the only one in my class that leaves early on a Thursday afternoon ? Why am I going to another school and attending a class with other children from other schools? What is so special about me?
At least one of the other children attending this course was a pupil from a school for autistic children. I don't think it took much brain power from my son, to work out that if the child sitting next to him, working on the very same things as him, was autistic, then it would follow that he himself was in fact autistic. I was not aware of this discovery until one night I was helping him with homework and trying to encourage him to write neatly. "Take your time and think about what you want to write, careful now". I was saying.
"Dad !" he said, on sensing a hint of frustration in my voice."I am autistic that is why I can not write".
He had obviously accepted this fact with out a lot of fuss, in fact he was now using it as an excuse. My initial reaction was no reaction in fact I did a very good impersonation of a statue. Since that evening though I have stood my ground and told him that no matter, good writing is always useful in this world.
When and how will I tell my son he has autism, or will I in fact have to tell him, will that be done by some one else? If I have to tell him? How do I go about it ? Up to age eight I don't think it really mattered but at nine and beyond his cognitive awareness was catching up with his peers. Often I have been told that my son is about two years behind in maturity. That being said: it is by no means a clear cut indication of his emotional depth or understanding. Over the years it has become increasingly obvious to me that you can not pigeon hole autistic children by simply saying they are behind because they can be both behind and ahead of there peers also their emotional view of the world is quite different from children without autism.
As it happened at age nine in the winter of 2011 I was asked if I would like my son to attend a ten week course in social skills. This would involve him, leaving his school on a Thursday afternoon around 1 pm to attend another primary school in the city. No transport was available so I had to break my working day to get him there. This whole process started to intrigue my son. Why, he was reasoning, I am the only one in my class that leaves early on a Thursday afternoon ? Why am I going to another school and attending a class with other children from other schools? What is so special about me?
At least one of the other children attending this course was a pupil from a school for autistic children. I don't think it took much brain power from my son, to work out that if the child sitting next to him, working on the very same things as him, was autistic, then it would follow that he himself was in fact autistic. I was not aware of this discovery until one night I was helping him with homework and trying to encourage him to write neatly. "Take your time and think about what you want to write, careful now". I was saying.
"Dad !" he said, on sensing a hint of frustration in my voice."I am autistic that is why I can not write".
He had obviously accepted this fact with out a lot of fuss, in fact he was now using it as an excuse. My initial reaction was no reaction in fact I did a very good impersonation of a statue. Since that evening though I have stood my ground and told him that no matter, good writing is always useful in this world.
Saturday, 23 February 2013
Improving the writing
Kate came at the start of the summer holidays and worked with him about once a week for almost four months, combining play with work, first a game then some writing and so on. She also had some diagrams of letters he could follow to help him form the letters. His writing did improve, what she did discover though was that his wrists were not as strong as a they could be. He had been doing exercises at school with a stress ball but I don't think he could concentrate long enough to make this practice worth while. What did make an immense difference to the strength in his wrists was when he took up guitar lessons.
He has always shown a big interest in music, and it seemed only natural to encourage this side of him. He is proving to be an excellent student and another positive of the lessons is the fact that the playing of a guitar strengthens his wrists. The difference is obvious in his writing now compared with before he started learning guitar.
I can't help asking myself why I am so keen for him to write well.His typing skills are exceptional for a child his age. His teachers have not seemed overly concerned by the fact that most of his work is done on a computer and I understand we live in a time were from day to day in our working lives we hardly need to put pen or pencil to paper. It would not surprise me if most of us could go from one day to the next barely writing anything free hand at all. I still feel it is an important skill though, it is a very personnel way of communicating, to receive a hand written card or letter is far more heart warming than an e.mail or text. I read recently of a school in England were all the pupils have been given tablet computers, which to me, some one born in 1959 is astounding. Recently I took my son to join the local library and once they had all the details they needed, they asked my son to sign his name on his library card. He did this very slowly and methodically as was fitting this big moment in his life and although the letters he wrote were a little large and looked like they had been written by a child two years his junior, I could sense the obvious pride he had at being able to do this, all these writing lessons actually made some sense to him. The librarian watched him signing and only allowed herself a flicker of response, it accured to me it was not the first time she had witnessed a card signing of this nature.
In the future if his writing does not improve his educators will find a way around this. Does that encourage him to be lazy ? Possibly, what it does allow is for him to keep up with his peers and in some cases go ahead of them.
He has always shown a big interest in music, and it seemed only natural to encourage this side of him. He is proving to be an excellent student and another positive of the lessons is the fact that the playing of a guitar strengthens his wrists. The difference is obvious in his writing now compared with before he started learning guitar.
I can't help asking myself why I am so keen for him to write well.His typing skills are exceptional for a child his age. His teachers have not seemed overly concerned by the fact that most of his work is done on a computer and I understand we live in a time were from day to day in our working lives we hardly need to put pen or pencil to paper. It would not surprise me if most of us could go from one day to the next barely writing anything free hand at all. I still feel it is an important skill though, it is a very personnel way of communicating, to receive a hand written card or letter is far more heart warming than an e.mail or text. I read recently of a school in England were all the pupils have been given tablet computers, which to me, some one born in 1959 is astounding. Recently I took my son to join the local library and once they had all the details they needed, they asked my son to sign his name on his library card. He did this very slowly and methodically as was fitting this big moment in his life and although the letters he wrote were a little large and looked like they had been written by a child two years his junior, I could sense the obvious pride he had at being able to do this, all these writing lessons actually made some sense to him. The librarian watched him signing and only allowed herself a flicker of response, it accured to me it was not the first time she had witnessed a card signing of this nature.
In the future if his writing does not improve his educators will find a way around this. Does that encourage him to be lazy ? Possibly, what it does allow is for him to keep up with his peers and in some cases go ahead of them.
Friday, 22 February 2013
I.E.P.
Twice a year an I.E.P. is organised at my sons school to discuss his progress and what is required to carry on the good work of educating him. Individual Education Programme is what I think it means if my memory serves. They take place at the beginning of the school year and at the end, I am invited to attend the one at the end of the school year. In the first three years everyone involved in his education attended. Speech and language therapist, occupational therapist, child psychologist, class teacher, learning assistant, support for learning teacher and the head teacher. But since we fell into a recession it seems the out of school professionals are phoning it in. Which whilst I am a little concerned, I am not so worried because he is progressing very well, amazingly so in fact.
They tell me his reading is ahead of the rest of the class although his maths skills are not quite up to scratch. The one thing that I find most frustrating though is his writing. It truly is like a spider has walked through some wet ink then across a page. Having raised my concerns about his writing at the I.E.P. meetings on several occasions and then noting his improvement has been slow. I have a feeling they just don't have the time to work with him one to one on his writing skills and as such are happy that he uses a typewriting type of computer or 'Alphasmart', to complete his homework with. He can spell very well and he can also read what he has written, but sadly no one else can read what he has written. He also writes very quickly perhaps trying to keep up with his thoughts. When he does slow down and concentrates he can produce something very illegible and also neat. He once asked me if he could write a letter to a comic because he wanted to see if they would publish it. So having prepared what he wanted to say he set about writing it. I had to explain that it needed to be neat or no one would understand it. Sure enough he wrote a very good letter and very neatly written. He obviously understood the importance of writing neatly. It made me think that perhaps if we could some how get him to understand that he is writing for some one else and not just himself, it might make a difference, but to no avail.
So again I had to turn to Kate the autistic guru who had already helped me improve his diet. With the charity she worked for, the autistic children she works with are on a list, and every time she attends to one and completes a task with them, the child returns to the end of the list and so on. She had contacted me to let me know that my son was getting close to the top of the list again, and was there anything I wanted her to help with.
They tell me his reading is ahead of the rest of the class although his maths skills are not quite up to scratch. The one thing that I find most frustrating though is his writing. It truly is like a spider has walked through some wet ink then across a page. Having raised my concerns about his writing at the I.E.P. meetings on several occasions and then noting his improvement has been slow. I have a feeling they just don't have the time to work with him one to one on his writing skills and as such are happy that he uses a typewriting type of computer or 'Alphasmart', to complete his homework with. He can spell very well and he can also read what he has written, but sadly no one else can read what he has written. He also writes very quickly perhaps trying to keep up with his thoughts. When he does slow down and concentrates he can produce something very illegible and also neat. He once asked me if he could write a letter to a comic because he wanted to see if they would publish it. So having prepared what he wanted to say he set about writing it. I had to explain that it needed to be neat or no one would understand it. Sure enough he wrote a very good letter and very neatly written. He obviously understood the importance of writing neatly. It made me think that perhaps if we could some how get him to understand that he is writing for some one else and not just himself, it might make a difference, but to no avail.
So again I had to turn to Kate the autistic guru who had already helped me improve his diet. With the charity she worked for, the autistic children she works with are on a list, and every time she attends to one and completes a task with them, the child returns to the end of the list and so on. She had contacted me to let me know that my son was getting close to the top of the list again, and was there anything I wanted her to help with.
Tuesday, 19 February 2013
Seventh Birthday
My son's seventh birthday celebration was a significant one. I invited a few of my family most especially some of his cousins, most of whom he had never met and of course my parents his grandparents. I should say I come from a large family so he does have a lot of cousins, first and second, most of whom he was completely unaware of due to his mother banning any of my family entering into our lives, for her own reasons of insecurity.
It was the first of his birthdays were it appeared he fully embraced the concept and seemed to also fully understand what was going on. He opened his presents with glee, he did need prompting to thank the givers, but soon got the hang of that also. He was fascinated to discover he was related to all of these people having spent the first five years of his life totally unaware of any family other than his parents and his mother's sister and mother. He also asked me if he could invite three boys from his class at school. This was the first time he had had any other children of his own age in his house they played well together. One of the boys in particular, my son was enthralled by, almost like a boy crush. The boy in question was very understanding of this adulation and showed a good insight into my sons autism. My son stuck like glue to this boy following him around and mimicking him and repeating his name over and over, eventually it got too much and the three boys made them selves scarce and fled to my sons bedroom while I entertained him and introduced him to his other guests. A little over two hours was about his limit then he started to get extremely hyper the guests, bless them all, recognised this and began to leave. I could tell it was going to take a few hours of quiet time before my boy had processed everything that had happened that day. A great day though.
Strangely or maybe not so, the next day he virtually ignored all of his presents almost as if the opening of them was all he was interested in. Some of them stayed in their plastic wrapping never to be explored, ending up eventually in our local charity shop. When we first arrived in Scotland he was given some mega blocks from my sister, her children had long exhausted their fascination. Even now six years on he still plays with these bricks, he first made a robot (called Plessy), he would first build it with green bricks then gradually change the bricks to red ones then yellow and so on. He could not go to bed unless in his eyes the robot was complete and woe betide anybody who tidied the bricks away while he was sleeping. He then developed a method of making the bricks into rudimentary shapes of band members, usually Queen, and he would do this while watching a DVD of them preforming and as the bands image changed, from song to song, so did his brick representation of them, utterly fascinating. Other toys have held his interest most recently a magic set, but the popularity of the bricks prevails, time and time again he returns to them as they seem to be the best way he can express what he is feeling about what it is he is most interested in, which is most often a musical performance of some kind ...
It was the first of his birthdays were it appeared he fully embraced the concept and seemed to also fully understand what was going on. He opened his presents with glee, he did need prompting to thank the givers, but soon got the hang of that also. He was fascinated to discover he was related to all of these people having spent the first five years of his life totally unaware of any family other than his parents and his mother's sister and mother. He also asked me if he could invite three boys from his class at school. This was the first time he had had any other children of his own age in his house they played well together. One of the boys in particular, my son was enthralled by, almost like a boy crush. The boy in question was very understanding of this adulation and showed a good insight into my sons autism. My son stuck like glue to this boy following him around and mimicking him and repeating his name over and over, eventually it got too much and the three boys made them selves scarce and fled to my sons bedroom while I entertained him and introduced him to his other guests. A little over two hours was about his limit then he started to get extremely hyper the guests, bless them all, recognised this and began to leave. I could tell it was going to take a few hours of quiet time before my boy had processed everything that had happened that day. A great day though.
Strangely or maybe not so, the next day he virtually ignored all of his presents almost as if the opening of them was all he was interested in. Some of them stayed in their plastic wrapping never to be explored, ending up eventually in our local charity shop. When we first arrived in Scotland he was given some mega blocks from my sister, her children had long exhausted their fascination. Even now six years on he still plays with these bricks, he first made a robot (called Plessy), he would first build it with green bricks then gradually change the bricks to red ones then yellow and so on. He could not go to bed unless in his eyes the robot was complete and woe betide anybody who tidied the bricks away while he was sleeping. He then developed a method of making the bricks into rudimentary shapes of band members, usually Queen, and he would do this while watching a DVD of them preforming and as the bands image changed, from song to song, so did his brick representation of them, utterly fascinating. Other toys have held his interest most recently a magic set, but the popularity of the bricks prevails, time and time again he returns to them as they seem to be the best way he can express what he is feeling about what it is he is most interested in, which is most often a musical performance of some kind ...
Monday, 18 February 2013
No more speech therapy
Just before my sons 11th birthday I received a letter from his speech and language therapists informing me that she no longer needed to visit the school to give my son speech and language lessons as she felt he was doing just fine on his own. He was being 'discharged' as she put it. That small piece of paper representing many years of work from many different people. In affect saying we had succeeded, all of us, in our hard work. A proud moment and one that underlines the belief that early diagnosis is key.
When I think that my son was well over four years old before he could even form a sentence, to his command of language now. I find it truly astounding, but then I did not attend school with him nor did I attend his speech and language sessions or his social skills classes. So I did not witness the slow progress he was making as it was happening. I was however there to have conversations with him when ever he wanted to speak, I find that I have developed the habit now of turning off the radio in the car or stopping what I am doing if he has something to say, so that I can give him my complete attention.
We were told very soon after his diagnosis that any kind of encouragement was vital in his progress. So to compliment him when he spoke, and when he put more than two words together, also when he used words instead of noises when communicating, was of extreme importance. What was not explained was how to get him to understand that he was in fact being complemented. Since his grasp of language was so basic and his response to anything I said to him was usually no response at all. I was at first at a complete loss as to how to make him understand that I was, in fact encouraging him.
I learnt though over time, that accentuating everything I said, and using very pronounced inflection when I read to him was having an effect, and he started to show glimmers of understanding. My theory is that he understood what was being said to him but he did not understand what the need for language was, almost as if he was sending me pictures into my mind, (I did not receive those pictures) of what it was he wanted to convey. Now if it just happened that a picture he was sending coincided with me giving him food or taking him to the toilet or whatever, then my pre empting his needs was only encouraging him to talk less. So I developed a technique of waiting, until he used noises or even language to ask me for something, and then getting very positively animated when he did. I devised a game, were I would throw one of his soft toys from one room in the house to another, he loved running after the toy to retrieve it, and it was at these times of heightened emotion on his part that I would talk to him with very exaggerated facial expressions and accentuated inflection. It took a bit of discipline on my part but it did make a difference ...
When I think that my son was well over four years old before he could even form a sentence, to his command of language now. I find it truly astounding, but then I did not attend school with him nor did I attend his speech and language sessions or his social skills classes. So I did not witness the slow progress he was making as it was happening. I was however there to have conversations with him when ever he wanted to speak, I find that I have developed the habit now of turning off the radio in the car or stopping what I am doing if he has something to say, so that I can give him my complete attention.
We were told very soon after his diagnosis that any kind of encouragement was vital in his progress. So to compliment him when he spoke, and when he put more than two words together, also when he used words instead of noises when communicating, was of extreme importance. What was not explained was how to get him to understand that he was in fact being complemented. Since his grasp of language was so basic and his response to anything I said to him was usually no response at all. I was at first at a complete loss as to how to make him understand that I was, in fact encouraging him.
I learnt though over time, that accentuating everything I said, and using very pronounced inflection when I read to him was having an effect, and he started to show glimmers of understanding. My theory is that he understood what was being said to him but he did not understand what the need for language was, almost as if he was sending me pictures into my mind, (I did not receive those pictures) of what it was he wanted to convey. Now if it just happened that a picture he was sending coincided with me giving him food or taking him to the toilet or whatever, then my pre empting his needs was only encouraging him to talk less. So I developed a technique of waiting, until he used noises or even language to ask me for something, and then getting very positively animated when he did. I devised a game, were I would throw one of his soft toys from one room in the house to another, he loved running after the toy to retrieve it, and it was at these times of heightened emotion on his part that I would talk to him with very exaggerated facial expressions and accentuated inflection. It took a bit of discipline on my part but it did make a difference ...
Wednesday, 13 February 2013
First year at the Scottish school
In his first year at his Scottish school my son was in a class called P 1-2. This in effect meant that some of the class would go on to P3 and some to P2 in the following year. Although he was of the age to go to P3 his teachers felt P2 would be a better option for him as he was still under a great deal of stress in class and needed all the support they could provide. He was in fact only really held back six months. It was a good decision and met with no resistance from me.
Autistic children, I have found, or any children with extra challenges in life, are not so different from their peers. So the less we treat them like they are different the more able they are to just get on with life. My son had to be allocated a place in his classroom separate from the other children so that he could better focus. But whenever it was deemed possible he was encouraged to join the other children(Now, at age 11, he sits with the rest of the class for the whole day). At the beginning of each school day he was given clear instructions about what he would be doing that day. These tasks would be displayed on a noticeboard directly in front of him on removable labels and as each task was completed the label would be removed. He, like many autistic children, functioned well when he knew what was ahead. Such a simple exercise, but invaluable in his education.
As he has got older he has become more able to cope with surprises, partly because I have made a point of surprising him and then being there to calm him, partly because life has surprises and again I would be there to calm him. Also, I think, because he has grown in confidence. This of course refers to 'desensitization', a great buzz word among the professionals. What I have yet to read about or be told about is that 'desensitization ' can take years. Years of constantly repeating the same set of actions to quell whatever it is that is causing your child distress. In my son's case his obvious ease in the company of dogs is a huge achievement and one that has taken at least seven years. To watch him holding a lead with a dog on the other end brings me no end of pride and admiration for his obvious bravery and fortitude. As I still get night tremors when I think of how he first reacted to dogs. He still has other challenges, and it could be many more years before he over comes those challenges but I am encouraged with the knowledge that he is better at coping than he was a year ago and a year before that, and so on ...
Autistic children, I have found, or any children with extra challenges in life, are not so different from their peers. So the less we treat them like they are different the more able they are to just get on with life. My son had to be allocated a place in his classroom separate from the other children so that he could better focus. But whenever it was deemed possible he was encouraged to join the other children(Now, at age 11, he sits with the rest of the class for the whole day). At the beginning of each school day he was given clear instructions about what he would be doing that day. These tasks would be displayed on a noticeboard directly in front of him on removable labels and as each task was completed the label would be removed. He, like many autistic children, functioned well when he knew what was ahead. Such a simple exercise, but invaluable in his education.
As he has got older he has become more able to cope with surprises, partly because I have made a point of surprising him and then being there to calm him, partly because life has surprises and again I would be there to calm him. Also, I think, because he has grown in confidence. This of course refers to 'desensitization', a great buzz word among the professionals. What I have yet to read about or be told about is that 'desensitization ' can take years. Years of constantly repeating the same set of actions to quell whatever it is that is causing your child distress. In my son's case his obvious ease in the company of dogs is a huge achievement and one that has taken at least seven years. To watch him holding a lead with a dog on the other end brings me no end of pride and admiration for his obvious bravery and fortitude. As I still get night tremors when I think of how he first reacted to dogs. He still has other challenges, and it could be many more years before he over comes those challenges but I am encouraged with the knowledge that he is better at coping than he was a year ago and a year before that, and so on ...
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