I was once challenged by a mother over my use of the word 'autistic'. This mother, who had a child with Autism, questioned me over the appropriateness of calling a child autistic. Her enquiry was barbed enough to let me know that she was not actually asking me my opinion, but in fact letting me know hers. Which was just as well because I was so stunned by the confrontation, I couldn't reply. I was informed that to call a child autistic is to define them as autistic first, child second. Whereas she would prefer it if they were referred to as children who have autism. I took her point, it was valid enough and I very rarely, if ever, use the word 'autistic' these days. And I certainly didn't dare utter the word in front of her again!
Having a child on the Autism Spectrum is all-consuming and every one of us in this position understands the gambit of daily battles we all endure. Amongst which is the abuse we receive from unwitting members of the public who feel they are doing a public duty to inform us our child clearly needs some discipline because of their behaviour out in public. So the onslaught from a Mum who knew I had a child who had literally just been diagnosed with Aspergers and who should have known I was still finding my feet in this new World I was entering, was confidence shattering. Whilst I don't expect to get on with a person just because we both have children on the Autism Spectrum, I did expect, as naive as it may sound now, we would all have empathy for one another. I certainly did not expect us to attack one another over the words we use to describe our children, especially when we face regular unkindness from others. How wrong I was.
Recently, I have seen a lot of discussions on Asperger websites over the word 'Aspie' and whether or not it is an offensive term. Presumably, some take exception to the word 'Aspie' for the same reasons as they would to the word 'autistic'. The unleashing of vitriolic comments on others who use the word 'Aspie' leaves me bewildered. Others, find the word less medical sounding and use it in an affectionate way to describe their child's condition. I can see older children using the word 'Aspie' to describe themselves, helping them relate and connect with others, without being ashamed of it. Teenage children who are capable of making the word 'sick' not refer to vomit but something that is cool, I'm quite sure can change the interpretation of the term 'Aspie' into something they consider awesome! 'S'up man, heard you're an Aspie' - 'Yeah, what ofs Dude?' - 'That's totally sick bro'! And no, I have absolutely no idea what the youth of today are talking about half the time either.
Using the above as an example, it seems to me the problem with certain words is not the words themselves, but the fact that they refer to our children having Autism or Aspergers. Whilst we, as parents, want others to realise being on the Autism Spectrum is a very real condition with very real symptoms, we worry, quite rightly most of the time, that people will view this condition wholly negatively. We try to push the existence of their condition into the background, so that others don't see them as less able. Tony Attwood refers to the 'disabilities' of our children as 'differabilities' which is totally accurate. For every typically developing trait they don't display, they have the ability to do something their typically developing peers don't. How many four year olds do you know who can read and spell despite still developing language skills? How many five year olds do you know who copy a painting so precisely you'd think it was an original but who have the inability to write? Harry has such an eye for attention to detail that since the age of four he has been making model planes with little more than a few lollipop sticks, cut out pieces of paper and sticky tape (and then, of course, has had to make them for the rest of his class). But his ability to walk away from me into the class is still something, at the age of eight, he severly struggles with.
Having a passionate belief about something is not to be knocked, apathy is a total waste of a life, but if that passion is over the dislike of the use of the word 'autistic' or 'Aspie' consider this; as opposed to pistols at dawn every time someone says one of these words, could our energies be better spent raising awareness of the Autism Spectrum itself? More specifically, instead of denying our child's condition, could we use our time better reinforcing the positive attributes of having a child on the spectrum? We need to tell our children every day 'you can do this because you have Aspergers or Autism'. If we teach our children their condition is not a weakness but something to be proud of, then the scenario of it being considered 'sick' to be an Aspie may not be as far-fetched as you may think If we empower them, they will be the ones to create this shift in attitude we all seek.
Of course, a little star power will do wonders too which brings me onto this past weekend's article in U On Sunday magazine featuring Kate Winslet. Suzanne Wagmann, herself a mother of a son with Autism, (who uses the word 'autistic' at least four times), interviews Kate who has recently set up a foundation for raising awareness of Autism, called the Golden Hat Foundation. In 2009, Kate was asked by Cherie Blair (wife of former British Prime Minister, Tony Blair) to do the voice-over for an Icelandic documentary called A Mother's Courage: Talking Back To Autism. I have long been an admirer of Kate's acting abilities and her refusal to conform to the size zero club of LA, whilst actually being the epitome of Hollywood glamour, so am delighted with her involvement.
I do, however, have one gripe against Ms Winslet. You may remember a little film she did back towards the beginning of her career called Titanic in which, coincidentally, my cousin was also cast opposite Kate in the sinking scenes (sorry to ruin the ending of the film for you if you haven't seen it)! Due to Kate presumably fluffing her lines or what-have-you, the film ran behind schedule and over budget and something had to give. That 'something' was my cousin's part which ended up being scrapped. Why would I be upset about this you ask? Well you see my cousin at this point was unmarried and upon hearing about his role in Titanic I had already chosen my Oscar's frock to accompany him as his date! As you can imagine, I was gutted. I'm sure my cousin was a little disappointed too but I'm sure he is now grateful not to be a big Hollywood star given that he is now happily married and we all know how Hollywood marriages end up!
However, Kate does redeem herself in my eyes a little as I love the fact that she has become involved with raising awareness of Autism, not because she has found herself as the mother of a child on the Autism Spectrum, but simply because she can and wants to. In addition to setting up her foundation, she has helped produce a book called The Golden Hat: Talking Back To Autism which features the likes of George Clooney and Justin Timberlake and will be released in April 2012 with all proceeds going to the Golden Hat Foundation.
But Ms Winslet if you are reading this, to fully restore my admiration for you, I expect a phone call from George Clooney inviting me to be his date at next year's Oscars! In the meantime, please let's all be kinder and don't attack each other for using the term 'Aspie' or 'Autistic'. There's enough negativity in this World and I, for one, do not have room for any more. There is only room in my life for tolerance, love and gin! (And I will of course find the room in my schedule for my date with George next year...)!
Autism Angel
Thursday, 20 October 2011
Monday, 10 October 2011
Thinking, Fighting and Being Angelina Jolie!
Most parents with ASD children will tell you that what they do most is think. You will hear the cry around the World from any ASD parent, 'I'm so tired of thinking all the time'! And we're not just talking about thinking what to have for dinner, or did I remember to pack the children's library books. Looking after an ASD child involves strategic planning, every second of every hour of every day. If MI6 ever want to replace Judi Dench or NATO need a new Head of Defence, they need to find an ASD parent. More often than not this will be the Mum. Apart from running a diary in our heads scheduling medical appointments and therapy sessions which occur on a regular basis, we plan our children's day with military precision. Tactics are plotted to ensure we are ready to outwit our child's every move. We must be prepared for all eventualities and have an escape route at all times. Because if we get it wrong, at best, there will be a mild explosion of some sort. At worst, any famous historic battle would look like a Scoody Doo cartoon by comparison.
Second to the thinking is the fighting. We have our battles with our children the same as other parents, although our arguments are carefully worded and calmly delivered as prescribed by our psychologists! What our battles are about can also be different. I personally have a daily struggle getting Harry to take his medicine. The scene in our house every morning is akin to a hostage situation with me gently coaxing him to take one more sip, whilst remaining firm that I will not give in to his demands for a helicopter to a tropical island, a 12 year old blonde and to let him off his medicine. Every second is a tense one until the cup has been drained, knowing one false move on my part could end disastrously. We used to mix his medicine into Milo (a chocolate drink). On one occasion when I detonated the bomb, my living room and brand new carpet were redecorated and, therefore, Milo is no more!
Disputes with our partners are a regular theme I hear spoken about amongst my friends, usually when the Mum is bearing the brunt of the responsibility and needs a little back-up. Not that I want Dads to think I am picking on them here, this is all based on my research, honest. And who hasn't had a battle with a medical professional, a school, a teacher, a politician or saddest of all, another parent? All in all, it's very exhausting and I, for one, have gin on an IV after the children have gone to bed!
Despite teaching our children to walk away from a fight, this is not often an option in our situation. If our battle involves getting the right educational support for our child or best medical assistance, we would be failing our children to accept anything less than they deserve and need. When it comes to a fallout with another parent, the decision on whether to walk away or not can be a hard one if the other parent is a friend. We want other parents to understand our child but there has to be willingness to want to understand. Therefore, we adopt the role of peace envoy, trying to find a peaceful resolution to a situation. Again, if the UN want a new peace ambassador they know where to look - move over Angelina Jolie, you're so last year!
Consequently, looking after ourselves is so important when we lead the lives we do, but how do we do it? Personally, writing for me is my escape, although ironically it's on the topic of my ASD child. I also find getting back to nature helps, by that I do not mean I streak around the garden naked calling all the wild animals to come hither! I like to potter in the garden, growing veggies and looking after our chicken who clearly thinks we are running a luxury retirement home for chickens, and so doesn't lay eggs any more! The sooner we get some new ones who show the old girl how it's done, the better. In the meantime, she does fulfil a purpose as Long Legs' stress relief. I shouldn't complain about her lack of egg production as providing ASD children with a form of stress relief is vital. They are very easily frustrated and their stress levels are usually very high. Up until recently Long Legs' mode of stress release was to thrown furniture and put his feet through walls, which sounds worse than it is if you take into account houses in Australia are made with paper mache!
So back to this chicken, using the chicken to relieve Long Legs' stress is normally fine, expect when he ignores my instructions to not get the chicken out for a cuddle in school uniform. Nothing more likely to test the 'at all times you must try to stay calm with your ASD child', than said child appearing before you covered in chicken poop ten minutes before school! At these times, if I wasn't a vegetarian, I'm sure I could find some useful ways to expel my stress using the chicken too! But as this is not an option, perhaps the idea of running around naked in my garden calling all the wild animals to come hither is not a bad one after all...
Second to the thinking is the fighting. We have our battles with our children the same as other parents, although our arguments are carefully worded and calmly delivered as prescribed by our psychologists! What our battles are about can also be different. I personally have a daily struggle getting Harry to take his medicine. The scene in our house every morning is akin to a hostage situation with me gently coaxing him to take one more sip, whilst remaining firm that I will not give in to his demands for a helicopter to a tropical island, a 12 year old blonde and to let him off his medicine. Every second is a tense one until the cup has been drained, knowing one false move on my part could end disastrously. We used to mix his medicine into Milo (a chocolate drink). On one occasion when I detonated the bomb, my living room and brand new carpet were redecorated and, therefore, Milo is no more!
Disputes with our partners are a regular theme I hear spoken about amongst my friends, usually when the Mum is bearing the brunt of the responsibility and needs a little back-up. Not that I want Dads to think I am picking on them here, this is all based on my research, honest. And who hasn't had a battle with a medical professional, a school, a teacher, a politician or saddest of all, another parent? All in all, it's very exhausting and I, for one, have gin on an IV after the children have gone to bed!
Despite teaching our children to walk away from a fight, this is not often an option in our situation. If our battle involves getting the right educational support for our child or best medical assistance, we would be failing our children to accept anything less than they deserve and need. When it comes to a fallout with another parent, the decision on whether to walk away or not can be a hard one if the other parent is a friend. We want other parents to understand our child but there has to be willingness to want to understand. Therefore, we adopt the role of peace envoy, trying to find a peaceful resolution to a situation. Again, if the UN want a new peace ambassador they know where to look - move over Angelina Jolie, you're so last year!
Consequently, looking after ourselves is so important when we lead the lives we do, but how do we do it? Personally, writing for me is my escape, although ironically it's on the topic of my ASD child. I also find getting back to nature helps, by that I do not mean I streak around the garden naked calling all the wild animals to come hither! I like to potter in the garden, growing veggies and looking after our chicken who clearly thinks we are running a luxury retirement home for chickens, and so doesn't lay eggs any more! The sooner we get some new ones who show the old girl how it's done, the better. In the meantime, she does fulfil a purpose as Long Legs' stress relief. I shouldn't complain about her lack of egg production as providing ASD children with a form of stress relief is vital. They are very easily frustrated and their stress levels are usually very high. Up until recently Long Legs' mode of stress release was to thrown furniture and put his feet through walls, which sounds worse than it is if you take into account houses in Australia are made with paper mache!
So back to this chicken, using the chicken to relieve Long Legs' stress is normally fine, expect when he ignores my instructions to not get the chicken out for a cuddle in school uniform. Nothing more likely to test the 'at all times you must try to stay calm with your ASD child', than said child appearing before you covered in chicken poop ten minutes before school! At these times, if I wasn't a vegetarian, I'm sure I could find some useful ways to expel my stress using the chicken too! But as this is not an option, perhaps the idea of running around naked in my garden calling all the wild animals to come hither is not a bad one after all...
Monday, 3 October 2011
The Ups And The Downs!
This blog has been in my thought process for quite a while now. Somehow, the time and ability to do it has caught up with me and I can't think of a better time to start sharing with you than now. As all parents know, life with kids is full of ups and downs. When you're a parent of a child with Asperger's, those up's are way up high - the day they achieve something you've been told they will never achieve for example. But the down's are so far down, if you've never been down there, trust me, you don't want to go. But I'm going to focus on the up's as they've been pretty high up lately. And whilst us parents know life in the 'Hidden Lane' is hard, some people new to our World may think of it as all doom and gloom, and we all need to remember the positives our children bring to our lives and the options their differabilities can offer them.
When you bump into Tony Attwood on a regular basis, as I do, you'd think the novelty would wear off, but it doesn't. He quite literally is the Bono of the ASD World! This week, I found myself standing with him alone and pretended to fumble for something in my bag as quite frankly I didn't know what to say to him or more to the point, I felt that anything I did say would make me sound like a delirious fan. "Hey Tone, love your work!" would have had him looking at me like the crazy, mad, stalker parent that I feel I sometimes am. And asking him if he's doing anything nice for the weekend would seem like a complete waste of words when I could ask him so much more. So I chose to stay silent. Recently he stopped to talk to Long Legs and have a chat with him about his toy plane. I amazed myself by actually talking to him on this occasion, not just standing there like a blithering idiot, and I was genuinely touched by him taking the time to bend down and talk to Long Legs about his plane. Then, a few days ago, the whole family had the pleasure of meeting Mark Webber, F1 Australian legend and a hero of Long Legs who, like a lot of Aspies has a transport passion. He was an absolute gentleman, so kind to us all, particularly Long Legs and a more polite 'celebrity' I don't think you could ever wish to meet.
I was left pondering whether Long Legs would ever appreciate the enormity of both of these occasions in his life; it has taken him until recently to realise that Tony Attwood is not in fact Tony Abbot, opposition leader in Australia!; and whether he would ever realise that the research of one man over the past few decades has probably enabled him to seek and find the dream of being able to do the same work as the other man. Of course, one man will never know the appreciation I feel for him because quite frankly I'm a pathetic excuse of a woman who can't string two words together when she is in his presence! And Long Legs, well, he didn't display his appreciation for the other because he has Asperger's!
Despite throwing himself at me like a catapult when told we were going to meet Mark, then proceeding to deface an ordinary t-shirt and Renault F1 cap with indelible marker pen displaying his obvious adoration for Mark and his racing team, when the opportunity came around, Long Legs ran away the second Mark showed his face! Being a true hero, Mark came across to him, bent down to shake his hand and say hello. Long Legs managed to pull a few cheesie grins for the camera, belying his true feelings for the event. But when it came time to leave, Long Legs threw a 'goodbye' over his shoulder to Mark much to the bemusement of me.
This meeting gave me a renewed optimism that Long Leg's dreams of becoming a racing car driver are perhaps not as far-fetched as they could seem. Firstly, having held the belief that drivers had to be fairly short to fit into a racing car, I was surprised to discover Mark Webber is actually really tall, much taller than I anticipated as my husband had told me he was as tall as him (which isn't very), having met him on a previous occasion. Much to my amusement, he is in fact much taller than my husband but this bodes well for Long Legs who is on path to be a very tall boy.
Secondly, the passion for transport and, in particular cars, means Long Legs will always have the drive and determination to succeed in whichever career path he chooses - well there's got to be some benefits to having Asperger's right? And focus and determination along with perhaps some selfish, single-mindedness are all great ingredients for such a demanding career choice. I read in an interview that Mark had chosen not to get married or have children (although he does have a long term partner) for this reason. Given the latest research that Asperger's is more likely to be passed on genetically than previously thought, this is possibly a good thing. Not that I would change a single cell of either of my children, I love them as they are, but let's not pretend being the parent of a child with a hidden disability is easy!
However, this option is not within my control as Long Legs at the grand old age of 8 already has a penchant for all things female and blonde. Catching him checking out 12 year old girls walking past with their parents is amusing but a little off-balancing. I asked some other parents of 8 year olds if their sons were interested in girls too and I received a resounding no! Interestingly, I had already told myself that one day, one of my sons could announce they were gay and living in this modern World where I have friends of all persuasions, I was determined for it not to be a big deal for either of them to tell me. I guess, at least where Long Legs is concerned, this is no longer something I need to prepare for!
So now I suppose I should spend more time paying attention to Long Leg's passions as one day, depending on which passion takes precedence; all things blonde and cute or all things red and fast; I may have to get my head around the fact that I may never be a grandmother by him. Or, rather more disturbingly, I could end up being a grandmother by him rather sooner than I would hope!
When you bump into Tony Attwood on a regular basis, as I do, you'd think the novelty would wear off, but it doesn't. He quite literally is the Bono of the ASD World! This week, I found myself standing with him alone and pretended to fumble for something in my bag as quite frankly I didn't know what to say to him or more to the point, I felt that anything I did say would make me sound like a delirious fan. "Hey Tone, love your work!" would have had him looking at me like the crazy, mad, stalker parent that I feel I sometimes am. And asking him if he's doing anything nice for the weekend would seem like a complete waste of words when I could ask him so much more. So I chose to stay silent. Recently he stopped to talk to Long Legs and have a chat with him about his toy plane. I amazed myself by actually talking to him on this occasion, not just standing there like a blithering idiot, and I was genuinely touched by him taking the time to bend down and talk to Long Legs about his plane. Then, a few days ago, the whole family had the pleasure of meeting Mark Webber, F1 Australian legend and a hero of Long Legs who, like a lot of Aspies has a transport passion. He was an absolute gentleman, so kind to us all, particularly Long Legs and a more polite 'celebrity' I don't think you could ever wish to meet.
I was left pondering whether Long Legs would ever appreciate the enormity of both of these occasions in his life; it has taken him until recently to realise that Tony Attwood is not in fact Tony Abbot, opposition leader in Australia!; and whether he would ever realise that the research of one man over the past few decades has probably enabled him to seek and find the dream of being able to do the same work as the other man. Of course, one man will never know the appreciation I feel for him because quite frankly I'm a pathetic excuse of a woman who can't string two words together when she is in his presence! And Long Legs, well, he didn't display his appreciation for the other because he has Asperger's!
Despite throwing himself at me like a catapult when told we were going to meet Mark, then proceeding to deface an ordinary t-shirt and Renault F1 cap with indelible marker pen displaying his obvious adoration for Mark and his racing team, when the opportunity came around, Long Legs ran away the second Mark showed his face! Being a true hero, Mark came across to him, bent down to shake his hand and say hello. Long Legs managed to pull a few cheesie grins for the camera, belying his true feelings for the event. But when it came time to leave, Long Legs threw a 'goodbye' over his shoulder to Mark much to the bemusement of me.
This meeting gave me a renewed optimism that Long Leg's dreams of becoming a racing car driver are perhaps not as far-fetched as they could seem. Firstly, having held the belief that drivers had to be fairly short to fit into a racing car, I was surprised to discover Mark Webber is actually really tall, much taller than I anticipated as my husband had told me he was as tall as him (which isn't very), having met him on a previous occasion. Much to my amusement, he is in fact much taller than my husband but this bodes well for Long Legs who is on path to be a very tall boy.
Secondly, the passion for transport and, in particular cars, means Long Legs will always have the drive and determination to succeed in whichever career path he chooses - well there's got to be some benefits to having Asperger's right? And focus and determination along with perhaps some selfish, single-mindedness are all great ingredients for such a demanding career choice. I read in an interview that Mark had chosen not to get married or have children (although he does have a long term partner) for this reason. Given the latest research that Asperger's is more likely to be passed on genetically than previously thought, this is possibly a good thing. Not that I would change a single cell of either of my children, I love them as they are, but let's not pretend being the parent of a child with a hidden disability is easy!
However, this option is not within my control as Long Legs at the grand old age of 8 already has a penchant for all things female and blonde. Catching him checking out 12 year old girls walking past with their parents is amusing but a little off-balancing. I asked some other parents of 8 year olds if their sons were interested in girls too and I received a resounding no! Interestingly, I had already told myself that one day, one of my sons could announce they were gay and living in this modern World where I have friends of all persuasions, I was determined for it not to be a big deal for either of them to tell me. I guess, at least where Long Legs is concerned, this is no longer something I need to prepare for!
So now I suppose I should spend more time paying attention to Long Leg's passions as one day, depending on which passion takes precedence; all things blonde and cute or all things red and fast; I may have to get my head around the fact that I may never be a grandmother by him. Or, rather more disturbingly, I could end up being a grandmother by him rather sooner than I would hope!
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