On Friday I received a 'phone call from the local newspaper asking my views on the new Adult Autism Strategy, which had been given legal force by the Autism Act.
I said I was pleased.
Anything, which tackles the ignorance surrounding autism can only be a good thing, and this new strategy aims to introduce major improvements in health, social care and other services.
Despite the rapid increase in the rise of people being diagnosed with autism and autistic spectrum disorders, there is still very little awareness about the needs of people with autism, or the problems faced by those who support and care for them.
It has to change, because whether we like it or not, we all know someone whose life has been affected by this lifelong disability.
Autism doesn't just affect the sufferer - the ripples are far reaching.
My youngest son has autism. He will be twenty-one this year, on 2nd April, which is National Autism Awareness Day.
Ironic, don't you think?
Anyway, he's one of the lucky ones.
He was diagnosed with the disability when it was quite "rare", and got into the "system" when he was very young. Now, it’s incredibly difficult to even get a proper diagnosis, and without one you cannot access the appropriate help.
Jodi currently has a placement at a residential college for young adults with various special needs. I see him regularly and 'phone the college at least twice a week for updates.
Rarely do I chat to him on the telephone because he doesn't really speak. He NEVER phones me.
Like so many other autistic individuals, Jodi uses echolalia, which means he'll repeat the last word you say.
He communicates well via other means though. Sometimes he'll point, other times he'll gesture or mime, and other times he just does it.
Jodi likes to know what's happening, and in his room he has a calendar on which are marked important dates like birthdays, holidays, etc.
On Saturday, he'd written, "Mums Birthday"
Whenever Jodi comes home he checks the calendar to see what's going on and a few weeks ago, it was a relation's birthday.
He was 87 years old and is now a shadow of the large, overweight, jolly farmer, he used to be. Diabetes has taken its toll and he's just had his toes removed. They wanted to remove his entire leg but he said "No"
On his birthday, I rang my relation up and told Jodi to sing Happy Birthday to him. He did so – beautifully.
It made HIS day.
Now, on Saturday, when he was at college, Jodi pointed to the calendar in his room and indicated to his support worker it was my birthday. He then went to the telephone and indicated he wanted to 'phone me, so our number was dialled and when I answered the call, Jodi burst into a rendition of Happy Birthday.
It made MY day.
I cried, but it was the best birthday present ever!
Yes, I welcome the Adult Autism Strategy. These individuals have a lot to offer and like all of us, deserve a chance.
Jean Shaw
For more information on autism visit http://www.JeanShaw.com
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
02/04/2008
Autism Awareness - Things Are Not Always What They Seem
Autism Awareness
Apparently this week is autism awareness week. For those of us who have children with autism, every week is autism awareness week - every week, every day, every hour, every minute, every second. There's no escape, and for some the reality is very hard to take.
Some parents are so conscious of the unusual and unpredictable behaviour of their offspring; they refuse to take them out in public. Instead, they elect to hide away in the safety and seclusion of their own four walls, unable to face the stares, the whisperings and the downright rude remarks.
I know. I've been there, done that and worn the tee-shirt.
The big problem with autism, apart from the fact it is different for every one with the disability, is that it is invisible. There is usually nothing for the outside world to see. Our children look "normal".
When an autistic child misbehaves in public it is generally seen as a failure on the part of the parents to control him or her. The child is obviously "naughty", spoiled rotten and clearly in need of a firm hand. At least that's the way it appears.
However, perception and reality are two different things.
Autistic children do everything for a reason. When my son was small he used to hit and kick me all the time. He would have terrible tantrums, throw himself on the floor screaming and I never knew why. I only knew he wasn’t being deliberately naughty. He was just frustrated because he had no way of communicating.
Just imagine how you would feel if you suffered a stroke or some other condition which left you so you couldn't speak, read or write. You were also unable to point, or look at the things you actually wanted. Also, you didn't know the difference between Yes and No, so even if someone did ask you an appropriately worded question , you wouldn't be able to answer.
How would you communicate? How would you tell the world what you wanted if you couldn't actually see or get it?
Just think about that the next time you see some poor harassed parent with a seemingly spoiled and naughty child. Don't judge. Those poor people will be doing the best they can in a VERY difficult situation and the last thing they need is for people to stare and criticise.
Thankfully my son has learned to communicate and I am no longer his punch bag. Never once have I hit him but many people have told me I should have given him a good smack round the backside. "That will sort him out", they said.
One woman even offered to lend me her walking stick to beat him with when he was misbehaving in a shop, but children learn by example. What sort of example would a smack give? Anyway I knew he wasn't really naughty.
Autism is a growing problem. It's not going away and at some point you will come across some autistic children and some very worried and anxious parents. Please don't make their lives any harder by making rash judgments.
Many autistic children are hypersensitive. They see, hear, and feel far more than we do, and things like shopping can be painful and frightening experiences for them. Autism is a very complex disability.
So the next time you're out and see a parent struggling with a "naughty child", just stop and think for moment. Things aren't always as they seem!
Jean Shaw
www.jeanshaw.com
For an EASY to read, FUNNY and FASCINATING, TRUE STORY about AUTISM
to help explain the condition to friends, family, neighbours, teachers and just about anyone else on the planet.
Apparently this week is autism awareness week. For those of us who have children with autism, every week is autism awareness week - every week, every day, every hour, every minute, every second. There's no escape, and for some the reality is very hard to take.
Some parents are so conscious of the unusual and unpredictable behaviour of their offspring; they refuse to take them out in public. Instead, they elect to hide away in the safety and seclusion of their own four walls, unable to face the stares, the whisperings and the downright rude remarks.
I know. I've been there, done that and worn the tee-shirt.
The big problem with autism, apart from the fact it is different for every one with the disability, is that it is invisible. There is usually nothing for the outside world to see. Our children look "normal".
When an autistic child misbehaves in public it is generally seen as a failure on the part of the parents to control him or her. The child is obviously "naughty", spoiled rotten and clearly in need of a firm hand. At least that's the way it appears.
However, perception and reality are two different things.
Autistic children do everything for a reason. When my son was small he used to hit and kick me all the time. He would have terrible tantrums, throw himself on the floor screaming and I never knew why. I only knew he wasn’t being deliberately naughty. He was just frustrated because he had no way of communicating.
Just imagine how you would feel if you suffered a stroke or some other condition which left you so you couldn't speak, read or write. You were also unable to point, or look at the things you actually wanted. Also, you didn't know the difference between Yes and No, so even if someone did ask you an appropriately worded question , you wouldn't be able to answer.
How would you communicate? How would you tell the world what you wanted if you couldn't actually see or get it?
Just think about that the next time you see some poor harassed parent with a seemingly spoiled and naughty child. Don't judge. Those poor people will be doing the best they can in a VERY difficult situation and the last thing they need is for people to stare and criticise.
Thankfully my son has learned to communicate and I am no longer his punch bag. Never once have I hit him but many people have told me I should have given him a good smack round the backside. "That will sort him out", they said.
One woman even offered to lend me her walking stick to beat him with when he was misbehaving in a shop, but children learn by example. What sort of example would a smack give? Anyway I knew he wasn't really naughty.
Autism is a growing problem. It's not going away and at some point you will come across some autistic children and some very worried and anxious parents. Please don't make their lives any harder by making rash judgments.
Many autistic children are hypersensitive. They see, hear, and feel far more than we do, and things like shopping can be painful and frightening experiences for them. Autism is a very complex disability.
So the next time you're out and see a parent struggling with a "naughty child", just stop and think for moment. Things aren't always as they seem!
Jean Shaw
www.jeanshaw.com
For an EASY to read, FUNNY and FASCINATING, TRUE STORY about AUTISM
to help explain the condition to friends, family, neighbours, teachers and just about anyone else on the planet.
06/09/2007
Autism And Disability - Why Little Things Can Mean A Lot
My son developed autism just after his first birthday and I wouldn't describe my life since as being easy.
However, today I was reminded just how lucky I am.
Through various non invasive interventions, endless patience and persistence, he has developed into a nice young man who I can now take most places without wishing the ground would open up and swallow me.
My son is eighteen, physically very capable with a great sense of balance and hand/eye co-ordination.
He's now easy to look after and despite using limited language to communicate, he tries very hard in other ways to let people know what he wants and needs.
Another boy I know also tries very hard to communicate. However, he's not quite so physically able, infact he's in a wheelchair.
Now eight, he's become a very frustrated little individual who likes to assert himself whenever possible.
Unfortunately it is making it increasingly difficult for his mother to look after him and take him out alone.
Not only is he getting bigger and heavier, but where once he was happy to be pushed along wherever his mother chose, he now grabs on to anything he can get his hands on to prevent the wheelchair moving, especially if it means leaving somewhere he enjoys.
Railings, gates, lamp posts are all becoming hazardous and he's now mastered the art of the wheel chair equivalent of an emergency stop by putting on the brake when the chair is in motion.
The last time he did it his mother had taken him to a play park and he'd been reluctant to leave. Needless to say he'd entwined his little fingers around every thing he could manage on the route back to the car.
His mother anticipated further problems once they reached the vehicle so as soon as they got in range she got her keys out to open the car by remote control.
The plan was to make the transition from chair to car as quick as possible but her son had other ideas. He pulled on the brake, the chair tipped up and in her haste to keep it upright she dropped the keys down the drain.
The mother just sat down on the kerb and laughed. She had to, if not she would have cried and I know from experience that once you start it can take a long time to stop.
Hearing that story made me once more appreciate just how lucky I am.
One thing which would have made a considerable difference to the lady in question would have been a companion to help her - a friend - another pair of hands.
Over the years I have come to know one thing with certainty and that is the people who require the help the most are the ones least likely to ask for it.
I'd like you to bear that in mind the next time you think about your friend, relation or neighbour and imagine walking a day in their shoes.
Sometimes, even the smallest, simplest thing can mean so much and the difference between being able to cope or not.
I am fortunate in that I have a Circle of Friends for my son. They are people who have his best interests at heart and do fun things with him. It gives him the opportunity to enjoy a variety of activities, and gives me a break from having to be completely responsible all the time.
All are volunteers and help because they want to. They derive as much pleasure from the association as my son does and we all benefit from the relationship.
My Circle also enables me to give quality time to other family members. Often disabilities split families in two and I know of several couples who always do different activities so their "normal" children don't lose out. Some even take separate holidays.
Being a parent is never an easy task but when you have a child with a disability the family unit is frequently under strain. Many couples can't take it and there are more than a few mothers (and fathers) left to cope alone.
I know we all live in a busy world but most of us could, if we wanted, spare a few hours a month to help someone in need.
Believe me, it can make a huge difference.
For more information on autism and how to form a circle of friends
However, today I was reminded just how lucky I am.
Through various non invasive interventions, endless patience and persistence, he has developed into a nice young man who I can now take most places without wishing the ground would open up and swallow me.
My son is eighteen, physically very capable with a great sense of balance and hand/eye co-ordination.
He's now easy to look after and despite using limited language to communicate, he tries very hard in other ways to let people know what he wants and needs.
Another boy I know also tries very hard to communicate. However, he's not quite so physically able, infact he's in a wheelchair.
Now eight, he's become a very frustrated little individual who likes to assert himself whenever possible.
Unfortunately it is making it increasingly difficult for his mother to look after him and take him out alone.
Not only is he getting bigger and heavier, but where once he was happy to be pushed along wherever his mother chose, he now grabs on to anything he can get his hands on to prevent the wheelchair moving, especially if it means leaving somewhere he enjoys.
Railings, gates, lamp posts are all becoming hazardous and he's now mastered the art of the wheel chair equivalent of an emergency stop by putting on the brake when the chair is in motion.
The last time he did it his mother had taken him to a play park and he'd been reluctant to leave. Needless to say he'd entwined his little fingers around every thing he could manage on the route back to the car.
His mother anticipated further problems once they reached the vehicle so as soon as they got in range she got her keys out to open the car by remote control.
The plan was to make the transition from chair to car as quick as possible but her son had other ideas. He pulled on the brake, the chair tipped up and in her haste to keep it upright she dropped the keys down the drain.
The mother just sat down on the kerb and laughed. She had to, if not she would have cried and I know from experience that once you start it can take a long time to stop.
Hearing that story made me once more appreciate just how lucky I am.
One thing which would have made a considerable difference to the lady in question would have been a companion to help her - a friend - another pair of hands.
Over the years I have come to know one thing with certainty and that is the people who require the help the most are the ones least likely to ask for it.
I'd like you to bear that in mind the next time you think about your friend, relation or neighbour and imagine walking a day in their shoes.
Sometimes, even the smallest, simplest thing can mean so much and the difference between being able to cope or not.
I am fortunate in that I have a Circle of Friends for my son. They are people who have his best interests at heart and do fun things with him. It gives him the opportunity to enjoy a variety of activities, and gives me a break from having to be completely responsible all the time.
All are volunteers and help because they want to. They derive as much pleasure from the association as my son does and we all benefit from the relationship.
My Circle also enables me to give quality time to other family members. Often disabilities split families in two and I know of several couples who always do different activities so their "normal" children don't lose out. Some even take separate holidays.
Being a parent is never an easy task but when you have a child with a disability the family unit is frequently under strain. Many couples can't take it and there are more than a few mothers (and fathers) left to cope alone.
I know we all live in a busy world but most of us could, if we wanted, spare a few hours a month to help someone in need.
Believe me, it can make a huge difference.
For more information on autism and how to form a circle of friends
17/05/2007
Autism, Probiotics And The Lowly Sandwich
My son has autism and like many autistic individuals his diet had been a major issue.
It is getting better though.
Until he developed autism after his MMR vaccine my son would eat anything. He was a delight to feed.
However, things changed and for years he literally lived on Hoola Hoops. They are small round potato rings with very little nutritional value what so ever.
They come in packs and are ideal for transportation as they don't crush like packets of crisps. I should know as I have often carried suitcases full of them when we have travelled. The only consolation for that is they are light!
Hoola Hoops are convenience foods and ideal to put as an extra in a lunch box. They are better than crisps because they contain less salt, colourings and flavourings than most brands and now, according to the packet, contain 55% less saturated fat than they did in 2006!
Since they were the only things my son would eat he used to take four packets to school with him every day. As desert he would have a packet of Polos. These are round mints with holes in them.
Notice the similarities? – both round with holes in them.
He would eat the same at home, so his staple diet was Hoola Hoops and Polos washed down with fruit juice, never water. We gave him various vitamins and minerals to supplement.
Not any more!
Over the years we have tried all sorts of things with him but by far the most important intervention was to de-tox him for mercury. From then on his diet improved and since we introduced an amazing probiotic he now eats sandwiches, amongst other things which make life a whole lot easier.
I am so grateful to John Montagu. (read more and watch video)
World's First Probiotic Super Food certified Organic to Food Grade Standards
It is getting better though.
Until he developed autism after his MMR vaccine my son would eat anything. He was a delight to feed.
However, things changed and for years he literally lived on Hoola Hoops. They are small round potato rings with very little nutritional value what so ever.
They come in packs and are ideal for transportation as they don't crush like packets of crisps. I should know as I have often carried suitcases full of them when we have travelled. The only consolation for that is they are light!
Hoola Hoops are convenience foods and ideal to put as an extra in a lunch box. They are better than crisps because they contain less salt, colourings and flavourings than most brands and now, according to the packet, contain 55% less saturated fat than they did in 2006!
Since they were the only things my son would eat he used to take four packets to school with him every day. As desert he would have a packet of Polos. These are round mints with holes in them.
Notice the similarities? – both round with holes in them.
He would eat the same at home, so his staple diet was Hoola Hoops and Polos washed down with fruit juice, never water. We gave him various vitamins and minerals to supplement.
Not any more!
Over the years we have tried all sorts of things with him but by far the most important intervention was to de-tox him for mercury. From then on his diet improved and since we introduced an amazing probiotic he now eats sandwiches, amongst other things which make life a whole lot easier.
I am so grateful to John Montagu. (read more and watch video)
World's First Probiotic Super Food certified Organic to Food Grade Standards
04/05/2007
Autism - Why You Need A Circle Of Friends
My autistic son has just celebrated his 18th birthday and it was a very emotional affair for me.
Autism is a life long disability but it is not life threatening. I therefore always knew that unless he had some terrible accident or fatal illness he would reach adulthood.
However, I never expected he would be able to celebrate it in the way he did.
Read how having a circle of friends made all the difference.
Autism is a life long disability but it is not life threatening. I therefore always knew that unless he had some terrible accident or fatal illness he would reach adulthood.
However, I never expected he would be able to celebrate it in the way he did.
Read how having a circle of friends made all the difference.
Hello and Welcome
Hello and welcome to my first post.
Please excuse the lack of originality in the name of this blog but I like to keep things simple.
Basically I am a mother of two boys, one of whom has autism.
In a moment of what can only be described as menopausal madness I decided I would enter the world of internet marketing and it has certainly been a revelation!
This blog may suit anyone who is remotely interested in autism, organics, health issues, what not to do with internet marketing (I'm good at that!), and just general "stuff".
I know you are all busy but if you have the time and want to drop by sometimes I'd love to see you.
Meanwhile, if you want to find out more about me please visit www.jeanshaw.com
Please excuse the lack of originality in the name of this blog but I like to keep things simple.
Basically I am a mother of two boys, one of whom has autism.
In a moment of what can only be described as menopausal madness I decided I would enter the world of internet marketing and it has certainly been a revelation!
This blog may suit anyone who is remotely interested in autism, organics, health issues, what not to do with internet marketing (I'm good at that!), and just general "stuff".
I know you are all busy but if you have the time and want to drop by sometimes I'd love to see you.
Meanwhile, if you want to find out more about me please visit www.jeanshaw.com
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