Monday, 11 April 2011
Memoirs and Fiction Stories: Autism (Aspects of Asperger Syndrome) on a parents...
Memoirs and Fiction Stories: Autism (Aspects of Asperger Syndrome) on a parents...: "Why am I different? Why don't people like me? I wish I could be normal, I wish I wasn't thick, I wish I was dead! Just some of t..."
Autism (Aspects of Asperger Syndrome) on a parents account
Why am I different? Why don't people like me? I wish I could be normal, I wish I wasn't thick, I wish I was dead! Just some of the questions and statements my 21 year old Son has asked and as his Mother I should have been able to answer, I should have been able to make it better!
My youngest son Michael has (aspects of)Asperger syndrome, an Autistic Spectrum disorder, that remained undiagnosed until the age of 12, why? Because Asperger syndrome with all it's many aspects, can be notoriously difficult to diagnose and yet it is said that as many as one in four may be affected. Michael is classed as having high functioning Autism. To look at him you wouldn't know he is 'disabled'
He talks, walks, thinks, he has his own mind, his own unique style and is very talented in what he knows. Michael's niche is Dance, break and street dance, he also mastered the moves of his hero, Michael Jackson, who is also said to have had this disorder? I prefer to see it as an extraordinary talent and as is often the case, people with Autism have a talent that we 'normal' people can only wish we could possess, from the simple things that could go unnoticed by Mr Average, like remembering car registration numbers to computer programming, Einstein is suspected by some to have had an Autistic Spectrum disorder. It is the attention to detail, the ability and staying power and the strive to perfection that makes these talented people genius's against all the odds that the 'normal' amongst us cannot ever hope to achieve, so I ask myself who is the disabled person here. I also ask, What if the one in four was classed as 'normal' wouldn't we then be the minority and classed as disabled? No, because Autistic people don't put labels on others, they are none judgemental, they are far to busy striving to perfect their genius and fit in to the very confusing 'normal' world that we created.
This is Michaels Story seen through my eyes as his Mother and observer:
Michael is the youngest of four and was born, a breech baby in August 1989, from the moment of his birth I knew something was wrong ( It is said that the percentage of children particularly males born in August with learning disabilities is higher than any other month of the year) He cried and screamed from the moment of birth and didn't stop for the first year of his life, he slept on average 2 hours and never slept more than 4 hours never a whole night (and still doesn't although he now amuses himself whilst we sleep) I didn't get a full nights sleep for the first five years of his life. I walked the streets with him in the pram or took him out in the car at night or stood bouncing him wandering around the house and his older siblings walked the pram during the day, he was only quiet whilst there was movement. Finally so exhausted I took him into my bed and there he stayed until the age of 5.
He had constipation from birth (bowel problems are also common in children born with birth defects) this, according to the doctor, who I was constantly calling out of hours, was the cause of his distress, I was seen as a neurotic mother and when Michael was 8 weeks old, warned that if I continued to call him out I would be struck off they're patient list and quoted the charge for each of those call outs and so I resisted the temptation to call, it seemed I was on my own. I eventually went back to the surgery and Michaels bowel problems were treated with lactulose, it eased the problem, diet and allergy was blamed and I was advised to change his diet. He didn't eat particularly well anyway and would only eat what he liked and he would have starved had I not given in to his wants, he is extremely stubborn, but it's his way, he hates change and becomes extremely disturbed when things are changed, from basic food to daily routine, probably the most common universal aspect of Autism. Eventually he was treated at the local hospital (three years) and consultant. Initially they thought he'd had no nerve endings in the lower bowel and this may need to be removed, luckily they decided against this. The problem is still ongoing but we manage with medication
Other symptoms observed in Michaels case
Michael had a squint, I mentioned it at his 10 week and 10 month development check, it was ignored and again at his pre school development check, by which time it was very pronounced, Suddenly all his earlier development concerned were blamed on his inability to see, from crying and lack of interest in food and toys, colours or shapes, to walking (at 20 months) first words (2 years) he couldn't see and was they said bored and had, had no need to talk he would point to something, make a noise and either I or his Brothers or Sister would get it for him. This couldn't have been further from the truth, Michael made inappropriate noises and movements (still does but in the privacy of his room) with his hands especially when distressed or excited, he also had mobility problems and underdeveloped muscles, (also an asthmatic) all was noted, but with the exception of his (almost blind in his left eye and his right eye sight very poor) eyesight being treated with glasses and an exclusion patch over his good eye, no further treatment or investigations were followed, I was still considered a bad parent and it was even suggested that Michael was in danger and there was suggestion of Social Services involvement although after I reported and complained in writing to the local medical authority about the particular GP and her remarks the matter was dropped.
So Michael started mainstream school almost blind. He spent most of his time stood on his own during playtimes and alone in class, he was laughed at and ridiculed, bullied and beaten throughout his first two years, not only by his peer group but his own class teacher, by the end of those first two years at the age of six, was when he first mentioned wanting to die. It was the first time I have thought I might like to join him and put us both out of our misery. But of course I didn't instead I started my crusade to protect my son, complain to the head of the school and the local authority and eventually moved him to a school close to home that had a less formal education system. I lied about what year he was in and he was placed in year 2 again,in an effort to allow him to catch up with his literacy and numeracy skills, they realised just 3 weeks later what I'd done but with consultation with his teachers and the head they decided that my idea had been the right one for Michael and also started the assessment for an educational statement. Michael was given 7.5hours a week one to one tuition. A (legal educational) statement for a specific child was funded for the needs of the specific child throughout they're time in education
However Government legislation changed and the funding was given to the school that the child attends and although I campaigned to keep Michael's funding specific to him and managed to extend it for a further year until he left Primary School. This in my opinion is very wrong as a child may enter the school without a legal statement but have more needs than a statemented child and consequently the funding would be used for the child with the most need and in the case of my child there was not enough funding to go around and so my son's education and his future was sacrificed. This didn't come to light until Michael sat his GCSE's and I questioned why he didn't have someone with him to help explain the questions during the exam's, I was told that there was no record of his statement, I rang the Dorset Education Department and they rang me back two weeks later to say they had found it in the archives for which they apologised.
We also enrolled him in a local Martial Arts club to attempt to help him rebuild his self esteem and help him to protect himself from the constant bullying. He excelled and patterns and shapes the body makes in the movements of martial art came easily to him, we had found something that Michael was good at and he moved through his belts very quickly. But although he was very good and took part in several displays, even achieving two medals in competition, when his sensai left and a new one came in Michael didn't want to go any more, he couldn't accept the change. Of course his confidence had improved but he would never use the skills in self defence against the bullies, everything is taken literally. He was told he must never use his skills outside of the club.
Michael's eyesight improved slightly but he also refused to wear his glasses any more,
He said 'That's another reason for me being bullied'.
He was 11 years old before he could read much and only just about write but maths was completely beyond his comprehension and he was due to go to secondary school the following year.
Asperger syndrome had been mentioned to me by the special needs co-ordinator, Mr Weeks the year before, he suspected that it may be Michael's problem and that coupled with a feature on G.M.TV about Autism and Asperger Syndrome fitted like a glove with my son's symptoms. I made an appointment with my GP that day and although he disagreed with me saying my son was a perfectly 'normal' twelve year old I persisted and asked for a second opinion. He then agreed reluctantly,
saying I'll bet you Michael hasn't got it'
to start the testing with the specialists which lasted almost a year, this included numerous visits to the child development centre and speech therapy sessions for observation skills, blood and mobility tests. Finally the results and my thoughts were confirmed. Although the diagnosis had no impact or made any change to our lives or the continuing problems but did give me and Michael some explanation as to his differences and so a little peace of mind.
Throughout his education he was ridiculed and very lonely most seriously bullied having a knife pulled on him in school and beaten up by 3 youths and needed hospital treatment (out of school) for head injuries and although the Police advised us not to press charges against the 3 as they were known to retaliate Feb 2003, we persisted and the three were charged and made to pay £50 each compensation to Michael and 6months Supervision orders, little compensation for the continued mental and physical scars that Michael suffers to this day .
His educational needs were never met and he was completely failed both in school and in further education, due to Government legislation constantly changing. The young people with the most needs cost the education system to much to accommodate and support and so they are deterred from entering further education, Michael completed his first year in performing arts with distinction but was refused entry the following year, a two year course which would have enabled him to continue to University, because he didn't make the grade in Maths and English.
But although Michael's confidence and ability has been constantly battered and his life has been extremely challenging and no doubt will continue to be, he has risen to the challenge. At 13 he joined with an older friend and break dancer and started to learn to dance and just like his Martial Arts, he took to it like a duck to water. He with the help of his dance teacher and friend Darren Ward, won first place for 3 years the inter youth club dance trophy in Bournemouth, he won the freestyle national championship at Pontins Breen Sands in December 2005, he's entered numerous talent shows and contests including Idol 08 and 'move like Michael Jackson' Because he does move like Michael Jackson, (he's taught himself to sing and play guitar over the last 2 years and is upstairs singing and playing now) he works for and has appeared in several shows at the Lighthouse Poole for DFA a dance troupe run by Stella Mavris, who has also been a massive support to Michael and he in turn teaches dance to youngsters at the Lighthouse and various schools across the area, Michael has deep understanding of challenging behaviour in some of the troubled youngsters he teaches and the patience to listen. The world could do with a lot more Michael's
Michael is also known as Macko Grimmer and the official member and dancer with his Brothers rock band 'Brothers Grimmer' The track 'Who I Am' recorded on they're first CD The big Red Book of Nursery Rants and the proceeds from the track are donated to the N.A.S National Autistic Society
www.brothersgrimmer.co.uk
I am extremely proud of my son and his achievements. He isn't disabled in my eyes, he is unique and different from the 'norm' it makes life interesting and we as a family celebrate his differences So if you suspect that you or anyone you know has any of the symptoms of Autism, there is help out there, first stop GP, you just have to be assertive, don't be fobbed off and raising awareness is the challenge I am setting you. Getting an Autistic Person to look into your eyes is challenging, stop a moment and consider how you look to them! Now who's ignorant?
My youngest son Michael has (aspects of)Asperger syndrome, an Autistic Spectrum disorder, that remained undiagnosed until the age of 12, why? Because Asperger syndrome with all it's many aspects, can be notoriously difficult to diagnose and yet it is said that as many as one in four may be affected. Michael is classed as having high functioning Autism. To look at him you wouldn't know he is 'disabled'
He talks, walks, thinks, he has his own mind, his own unique style and is very talented in what he knows. Michael's niche is Dance, break and street dance, he also mastered the moves of his hero, Michael Jackson, who is also said to have had this disorder? I prefer to see it as an extraordinary talent and as is often the case, people with Autism have a talent that we 'normal' people can only wish we could possess, from the simple things that could go unnoticed by Mr Average, like remembering car registration numbers to computer programming, Einstein is suspected by some to have had an Autistic Spectrum disorder. It is the attention to detail, the ability and staying power and the strive to perfection that makes these talented people genius's against all the odds that the 'normal' amongst us cannot ever hope to achieve, so I ask myself who is the disabled person here. I also ask, What if the one in four was classed as 'normal' wouldn't we then be the minority and classed as disabled? No, because Autistic people don't put labels on others, they are none judgemental, they are far to busy striving to perfect their genius and fit in to the very confusing 'normal' world that we created.
This is Michaels Story seen through my eyes as his Mother and observer:
Michael is the youngest of four and was born, a breech baby in August 1989, from the moment of his birth I knew something was wrong ( It is said that the percentage of children particularly males born in August with learning disabilities is higher than any other month of the year) He cried and screamed from the moment of birth and didn't stop for the first year of his life, he slept on average 2 hours and never slept more than 4 hours never a whole night (and still doesn't although he now amuses himself whilst we sleep) I didn't get a full nights sleep for the first five years of his life. I walked the streets with him in the pram or took him out in the car at night or stood bouncing him wandering around the house and his older siblings walked the pram during the day, he was only quiet whilst there was movement. Finally so exhausted I took him into my bed and there he stayed until the age of 5.
He had constipation from birth (bowel problems are also common in children born with birth defects) this, according to the doctor, who I was constantly calling out of hours, was the cause of his distress, I was seen as a neurotic mother and when Michael was 8 weeks old, warned that if I continued to call him out I would be struck off they're patient list and quoted the charge for each of those call outs and so I resisted the temptation to call, it seemed I was on my own. I eventually went back to the surgery and Michaels bowel problems were treated with lactulose, it eased the problem, diet and allergy was blamed and I was advised to change his diet. He didn't eat particularly well anyway and would only eat what he liked and he would have starved had I not given in to his wants, he is extremely stubborn, but it's his way, he hates change and becomes extremely disturbed when things are changed, from basic food to daily routine, probably the most common universal aspect of Autism. Eventually he was treated at the local hospital (three years) and consultant. Initially they thought he'd had no nerve endings in the lower bowel and this may need to be removed, luckily they decided against this. The problem is still ongoing but we manage with medication
Other symptoms observed in Michaels case
Michael had a squint, I mentioned it at his 10 week and 10 month development check, it was ignored and again at his pre school development check, by which time it was very pronounced, Suddenly all his earlier development concerned were blamed on his inability to see, from crying and lack of interest in food and toys, colours or shapes, to walking (at 20 months) first words (2 years) he couldn't see and was they said bored and had, had no need to talk he would point to something, make a noise and either I or his Brothers or Sister would get it for him. This couldn't have been further from the truth, Michael made inappropriate noises and movements (still does but in the privacy of his room) with his hands especially when distressed or excited, he also had mobility problems and underdeveloped muscles, (also an asthmatic) all was noted, but with the exception of his (almost blind in his left eye and his right eye sight very poor) eyesight being treated with glasses and an exclusion patch over his good eye, no further treatment or investigations were followed, I was still considered a bad parent and it was even suggested that Michael was in danger and there was suggestion of Social Services involvement although after I reported and complained in writing to the local medical authority about the particular GP and her remarks the matter was dropped.
So Michael started mainstream school almost blind. He spent most of his time stood on his own during playtimes and alone in class, he was laughed at and ridiculed, bullied and beaten throughout his first two years, not only by his peer group but his own class teacher, by the end of those first two years at the age of six, was when he first mentioned wanting to die. It was the first time I have thought I might like to join him and put us both out of our misery. But of course I didn't instead I started my crusade to protect my son, complain to the head of the school and the local authority and eventually moved him to a school close to home that had a less formal education system. I lied about what year he was in and he was placed in year 2 again,in an effort to allow him to catch up with his literacy and numeracy skills, they realised just 3 weeks later what I'd done but with consultation with his teachers and the head they decided that my idea had been the right one for Michael and also started the assessment for an educational statement. Michael was given 7.5hours a week one to one tuition. A (legal educational) statement for a specific child was funded for the needs of the specific child throughout they're time in education
However Government legislation changed and the funding was given to the school that the child attends and although I campaigned to keep Michael's funding specific to him and managed to extend it for a further year until he left Primary School. This in my opinion is very wrong as a child may enter the school without a legal statement but have more needs than a statemented child and consequently the funding would be used for the child with the most need and in the case of my child there was not enough funding to go around and so my son's education and his future was sacrificed. This didn't come to light until Michael sat his GCSE's and I questioned why he didn't have someone with him to help explain the questions during the exam's, I was told that there was no record of his statement, I rang the Dorset Education Department and they rang me back two weeks later to say they had found it in the archives for which they apologised.
We also enrolled him in a local Martial Arts club to attempt to help him rebuild his self esteem and help him to protect himself from the constant bullying. He excelled and patterns and shapes the body makes in the movements of martial art came easily to him, we had found something that Michael was good at and he moved through his belts very quickly. But although he was very good and took part in several displays, even achieving two medals in competition, when his sensai left and a new one came in Michael didn't want to go any more, he couldn't accept the change. Of course his confidence had improved but he would never use the skills in self defence against the bullies, everything is taken literally. He was told he must never use his skills outside of the club.
Michael's eyesight improved slightly but he also refused to wear his glasses any more,
He said 'That's another reason for me being bullied'.
He was 11 years old before he could read much and only just about write but maths was completely beyond his comprehension and he was due to go to secondary school the following year.
Asperger syndrome had been mentioned to me by the special needs co-ordinator, Mr Weeks the year before, he suspected that it may be Michael's problem and that coupled with a feature on G.M.TV about Autism and Asperger Syndrome fitted like a glove with my son's symptoms. I made an appointment with my GP that day and although he disagreed with me saying my son was a perfectly 'normal' twelve year old I persisted and asked for a second opinion. He then agreed reluctantly,
saying I'll bet you Michael hasn't got it'
to start the testing with the specialists which lasted almost a year, this included numerous visits to the child development centre and speech therapy sessions for observation skills, blood and mobility tests. Finally the results and my thoughts were confirmed. Although the diagnosis had no impact or made any change to our lives or the continuing problems but did give me and Michael some explanation as to his differences and so a little peace of mind.
Throughout his education he was ridiculed and very lonely most seriously bullied having a knife pulled on him in school and beaten up by 3 youths and needed hospital treatment (out of school) for head injuries and although the Police advised us not to press charges against the 3 as they were known to retaliate Feb 2003, we persisted and the three were charged and made to pay £50 each compensation to Michael and 6months Supervision orders, little compensation for the continued mental and physical scars that Michael suffers to this day .
His educational needs were never met and he was completely failed both in school and in further education, due to Government legislation constantly changing. The young people with the most needs cost the education system to much to accommodate and support and so they are deterred from entering further education, Michael completed his first year in performing arts with distinction but was refused entry the following year, a two year course which would have enabled him to continue to University, because he didn't make the grade in Maths and English.
But although Michael's confidence and ability has been constantly battered and his life has been extremely challenging and no doubt will continue to be, he has risen to the challenge. At 13 he joined with an older friend and break dancer and started to learn to dance and just like his Martial Arts, he took to it like a duck to water. He with the help of his dance teacher and friend Darren Ward, won first place for 3 years the inter youth club dance trophy in Bournemouth, he won the freestyle national championship at Pontins Breen Sands in December 2005, he's entered numerous talent shows and contests including Idol 08 and 'move like Michael Jackson' Because he does move like Michael Jackson, (he's taught himself to sing and play guitar over the last 2 years and is upstairs singing and playing now) he works for and has appeared in several shows at the Lighthouse Poole for DFA a dance troupe run by Stella Mavris, who has also been a massive support to Michael and he in turn teaches dance to youngsters at the Lighthouse and various schools across the area, Michael has deep understanding of challenging behaviour in some of the troubled youngsters he teaches and the patience to listen. The world could do with a lot more Michael's
Michael is also known as Macko Grimmer and the official member and dancer with his Brothers rock band 'Brothers Grimmer' The track 'Who I Am' recorded on they're first CD The big Red Book of Nursery Rants and the proceeds from the track are donated to the N.A.S National Autistic Society
I am extremely proud of my son and his achievements. He isn't disabled in my eyes, he is unique and different from the 'norm' it makes life interesting and we as a family celebrate his differences So if you suspect that you or anyone you know has any of the symptoms of Autism, there is help out there, first stop GP, you just have to be assertive, don't be fobbed off and raising awareness is the challenge I am setting you. Getting an Autistic Person to look into your eyes is challenging, stop a moment and consider how you look to them! Now who's ignorant?
Monday, 4 April 2011
Incapacity and DLA in the news
I watched the BBC report (breakfast TV) on the intended re-assessment of 1.5 million claimants, whilst I agree there should be a periodic reassessment, speaking from experience I can tell you that the reassessment is not only dependant on the views of the particular person chosen to reassess, usually a 'Health Professional?' but that, that person, whilst qualified medically, has no experience of the needs of a person with the disability, if they happen to catch you (I use that term loosely as a prearranged appointment is made by post) on a good day (Bear in mind that you are advised to fill in your claim pack, stating how the disability affects you on a bad day) no account is taken as to how your bad days affect you, they fill in the report according to their observations on that day.
The new claim pack (revamped in 2010) asks what you can do, not what you can't!
Of course there is a question that you will be asked (although they tend to apologise for asking)
'Do you consider that you have a learning difficulty, disability?'
Now I have come up with a plan today that I intend to send to Mr Camoron himself. I will approach him with this idea, not only to cut down the need for Health professionals visits and save on extortionate time and travel expenses but in the spirit of the new forms, What can you do, not what you can't? I am fully qualified to assess a persons disability based on experience and I'm over 50. I suggest that the vast majority of disabled people in this country are also far more qualified to assess the capacity of a person to work, assuming there are jobs and bosses willing to take a risk of employing someone, who is likely to have been out of employment for years, to retrain and will probably need help with access, unspecified amounts of time off, allowing for bad days and medication etc, doctor, specialist visits, disabled people who will of course need to be paid for their absence according to employment law.
Of course there are those that will attempt to claim and indeed have fraudulently claimed over the years and throughout the present system and made the system unfair on those that are entitled to these benefits the system needs changing. But it does need to take account of the majority of truly honest disabled people who would like nothing more than to work. Let the disabled decide who is and who is not disabled, face to face personal assessments, I believe we could save this country a fortune, finding gainful employment for disabled of all ages including the over 50's not to mention savings on postal charges and the reams of wasted paper that could possibly help protect us from global warming.
Of course there are those who would be unable to assess others, If you answered yes to learning difficulty, you shouldn't have done, because you understood the question and you are qualified to assess, however if your carer answered for you then you are not, but the chances are you won't have filled in the claim pack either or understood the questions on it and you certainly wouldn't have any capacity to appeal against the decision made on the basis of the 'Health Professional's' report which again speaking from experience is another story altogether.
I will let you know what the right honourable David Camoron says and maybe I will be your assessor for your claim for DLA and incapacity benefit, at least you will get a fair deal from me. If you think the same and or would like someone like me and you to assess your needs, say so, but beware I am no pushover although I can be pushed over, balance isn't what it used to be, Thanks Jan! :))
The new claim pack (revamped in 2010) asks what you can do, not what you can't!
Of course there is a question that you will be asked (although they tend to apologise for asking)
'Do you consider that you have a learning difficulty, disability?'
Now I have come up with a plan today that I intend to send to Mr Camoron himself. I will approach him with this idea, not only to cut down the need for Health professionals visits and save on extortionate time and travel expenses but in the spirit of the new forms, What can you do, not what you can't? I am fully qualified to assess a persons disability based on experience and I'm over 50. I suggest that the vast majority of disabled people in this country are also far more qualified to assess the capacity of a person to work, assuming there are jobs and bosses willing to take a risk of employing someone, who is likely to have been out of employment for years, to retrain and will probably need help with access, unspecified amounts of time off, allowing for bad days and medication etc, doctor, specialist visits, disabled people who will of course need to be paid for their absence according to employment law.
Of course there are those that will attempt to claim and indeed have fraudulently claimed over the years and throughout the present system and made the system unfair on those that are entitled to these benefits the system needs changing. But it does need to take account of the majority of truly honest disabled people who would like nothing more than to work. Let the disabled decide who is and who is not disabled, face to face personal assessments, I believe we could save this country a fortune, finding gainful employment for disabled of all ages including the over 50's not to mention savings on postal charges and the reams of wasted paper that could possibly help protect us from global warming.
Of course there are those who would be unable to assess others, If you answered yes to learning difficulty, you shouldn't have done, because you understood the question and you are qualified to assess, however if your carer answered for you then you are not, but the chances are you won't have filled in the claim pack either or understood the questions on it and you certainly wouldn't have any capacity to appeal against the decision made on the basis of the 'Health Professional's' report which again speaking from experience is another story altogether.
I will let you know what the right honourable David Camoron says and maybe I will be your assessor for your claim for DLA and incapacity benefit, at least you will get a fair deal from me. If you think the same and or would like someone like me and you to assess your needs, say so, but beware I am no pushover although I can be pushed over, balance isn't what it used to be, Thanks Jan! :))
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