December marks the end of the Australian school year, which for our ASC children is the time of year they go a little loopy and spit the proverbial dummy. It is also time for the man in the big red coat to come and visit which can also be stressful and the ever present strategic planning goes into overdrive. Turkeys are not the only thing running around headless at this time of year. So who to blame for the two events happening at the same time of year? The bright spark in the Australian Education Department who said the school year should run from January to December? Or Joseph and Mary for the ill-timed birth of their baby? What I really would like to know though is, Santa I have been soooooo good this year, (as in previous years!), when are you going to double my gin rations for the following year like I keep asking?!
Term 4 is notorious amongst us parents and the professionals who help us, as being the term when, if they haven't already during the year, the wheels well and truly fall off the car for our children. All children are exhausted towards the end of the school year, but exhaustion takes on a whole new meaning when referring to an ASC child. If I had the ability to peel open one of their heads, I think I would literally see scrambled eggs in place of their brain. But still the schools keep insisting they attend, do more assessments, take part in Christmas activities and week by week us parents wish for the end of term to come NOW! We give them half days off here and there, teachers give more free time in class just to help our children limp over the finish line but inevitably they will have crashed long before they get there.
This year I took the step of telling Harry's new teacher to pace what she expected of him over the year. If she pushed too hard in the first half of the year, I would be calling for the men in white coats to come and take me away by August! It seems to have worked a little as we made it to mid way through term 4 before the collision course made an appearance. We then gave him the entire last week off of school to recover his senses and to test mine to the limit! Am I being unreasonable thinking 4.30am is a little early to want to go out and play?! Three weeks after he finished school, I am now brave enough to take him out in public again! Cue the man with the beard...
No sooner have we returned to Planet Sanity, we then have to start Operation Reindeer. Christmas is the one time of the year when children love the excitement of a day being different from all the rest. Not so for our children who don't cope with change very well, over-stimulation and the unexpected. The most wonderful time of the year full of generosity of spirit sees ASC parents acting more like Scrooge as we dictate the presents our children can cope with, insist on there not being too many and the biggest bah humbug of them all, having to tell our relatives when they can and can't come to spend time with us and our children. As they get older, they do cope better but limitations still need to be in place. And for the food sensitive child, forget that headless turkey with all the trimmings!
This year, I am hoping I have learnt from Christmases past. We realised a few years ago that Harry did not cope with too many presents. One year he would have happily had the first one he opened, he was so overjoyed with it, there was real delight and appreciation that we will never forget. But as the loving parents that we are, we of course had more for him. And slowly, one by one, the un-wrapping got more careless and the presents less and less exciting. He went off with his first one happy as Harry! Lesson learnt.
We then tried to calm the over-stimulation down by spreading the gift giving over a few days. This totally confused him as he had no idea present giving ended and the expectation was for a present every day as Santa clearly had nothing better to do than pop back to our house every night for a week! This year I am attempting to solve all problems by limiting presents and telling him exactly how many there are. They have been numbered and I will give him a check list for him to tick off numbers as he opens them. Then when all boxes are ticked, it's game over! Hopefully, Santa has had some ASC training in the past year and something delivered by him this year will be appreciated!
Finding suitable presents that will bring delight to an ASC child's eyes and not horror or distress is tricky. They may not be able to work out how to use age-appropriate toys, or they may be too noisy or scary. Or, as we have the problem with, they may have an expectation of what they are going to get and it can all go a bit pear-shaped when they don't. To others, this child will seem spoilt and ungrateful, but really he's not. They need to know what is going to happen, and in the absence of being told what their gift is, they decide what is going to be. When things don't pan out the way they have in their heads, it's very traumatic and they can't cope.
After a few duff educational toys which we hoped Harry would find fun and would develop some of his skills, we realised he just couldn't use them and so we decided to try and be inventive and imaginative, giving him different things to traditional toys. Big mistake! As far as Harry is concerned, Christmas is for toys. So when Harry didn't get many things to play with last year or the year before (I mean how many cars/planes/lego does a boy really need?), the ipod Touch we got so he could listen to music and play games could just as well have been toilet roll! This year's battle is over his request, repeatedly, for an XBox 360 which he has been informed is not something Santa ever gives! At least this year he has verbalised this to us and we have had a fighting chance of heading him off at the pass. But he will of course have it in his head that is what he is getting because it's what he's asked for. Am I ready for a Christmas day meltdown? Oh yes! This year, bring on the cars, planes and lego!!!
And as for dinner, well I'm throwing caution to the wind there too this year, throwing the rule book well and truly out of the window. My boys will be served a gourmet beans on toast with a festive egg if they want - yes I know wrong holiday! I could try and insist we all sit down for a family meal but what's the point in giving Andrew and myself indigestion while encouraging the boys to eat my maple and pecan crusted carrots which I know they would much rather shove up my nose! So we will be enjoying the full works for two when they are tucked up in bed and as they will not eat my home made Christmas pudding, Andrew and I can stuff every last morsel into our mouths a la Dawn French in The Vicar of Dibley Christmas Special!
So whatever your plans are for Christmas, I hope you enjoy a calm and sane festive season. Thanks for reading this year, I hope I have made some of you realise you are not alone, have informed others and maybe given you all a giggle along the way! See you in 2012. Merry Christmas and a Happy New Year!
Autism Angel
Friday, 23 December 2011
Tuesday, 29 November 2011
Sleep, Drugs & Rock 'n' Roll
Anyone who knows me, knows I like my sleep. As a teenager doing the rounds of the house parties I wasn't much of a rebel. In fact, it was a bit of a joke that if there was a bed to be found in the house, there was a 99.9% chance I would find it. Usually well before midnight. So having babies could have been a huge shock to the system but I found as a new mum of one tiny baby I could slouch around in my pj's well past lunchtime and get dressed just before getting read for bed again. Not that I ever managed a nanna nap when my baby slept. If Harry had half an hour I was lucky. It was just as well I loved my friends from Mother's Group so much as I made have had to stick pins in their eyes every time they told me of their baby's three hour daytime sleeps otherwise. Having a second baby brought out the inner robot in me and I found that second pair of hands I never knew I had!
Sleep can be an issue for many ASC children. I know of children who wake up ridiculously early every morning and those who walk around in the middle of the night. Others, like Harry, find the mere act of dropping off to sleep impossible. Their minds are racing with anxiety and they are unable to switch off. Routines are crucial with all children but even more so with ASC children. Strict bedtime rituals and practices can make the difference between that child wanting to go to bed and sleeping or a parent spending many hours persuading them they have to go to bed.
Sleep has always been an issue for Harry and hindsight is a wonderful thing in this respect. The day Harry was born he stood out from the other babies in the small four-bed ward. He refused to go to sleep at night except in my arms, and that is where he stayed for the next five weeks. It is clear to see now that Harry was born anxious and the midwife who suggested I pop him into bed with me on his first night in this World, will always have my gratitude. Other less kind midwives were to tell me that it was the fact I let Harry be cuddled which caused his inability to sleep in a crib and who started my constant train of thought over the coming months and years of 'what did I do wrong to cause him to be like this?'
The beauty of having a child in the UK, where Harry was born, is that they can sleep in a pram outside without fear of creepy crawlies or any other wildlife sneaking in for a cuddle. Harry would sleep (ha!) outside in his pram by day and in bed with me at night. Of course the only one sleeping was him because I wasn't sleeping for fear of turning him into mash potato. After five weeks, he progressed to his crib which was placed right next to me where he started sleeping through the whole night and I was smugger than a smug person from smugsville.
That was until our first camping trip when he was four months old. Again, with the beauty of hindsight, it was clear to see that Harry didn't like change as his sleeping from that camping trip to this day is the first thing to go when his anxiety increases. He slept in our room for a lot longer than other babies usually do and once he started kamikazing out of his cot at twenty months, we were his hostages despite the fact he was the one behind the safety gate. He would stand screaming at the gate on his door until we would eventually find him fast asleep on the floor behind his gate. It was heartbreaking watching him scream but we heeded the maternal nurse's advice not to give in to him, he would learn to settle and if we gave in, he would keep doing it. He kept doing it anyway!
We moved to Australia when Harry was two and a half. It was at this point a new friend introduced me to the wonders of Phenergan and I became a convert. Apparently, it made me hyper as a toddler so I tried some on Harry before giving him a full dose but it soon became my saviour in a house where a toddler fought sleep regularly. It didn't help that we moved to a country where we discovered houses were built with the master bedroom well away from the other bedrooms so the parents could have a retreat. Subsequently our living room became Harry's bedroom as it was next to ours - and our parent's retreat became the Island of Sodor!
Phenergan continued to be my best friend especially on long haul flights back to the UK when the story of Goldilocks and the Two Bears was re-enacted by me and the two boys. One spoon for baby bear, one bigger spoon for middle sized bear and one whopping great spoon - never mind I'll just drink it out of the bottle - for Mummy Bear. On one flight, we all had five hours solid sleep in economy class, something unheard of I think - ever. When we landed in Manchester at 6.30am we were all so bright-eyed, our relatives couldn't believe that a) we had all just travelled twenty-three hours and b) I had done it alone with two small children. I have to say, Singapore Airlines were truly amazing on this flight looking after me so well, I claimed I would fly with two children on my own again any time. At this point Elliot was eighteen months old and I remembered what Harry was like travelling at two and a half and decided I valued my sanity too much and we'd leave the next long haul until Elliot was at least four and he had discovered the wonders of Sponge-Bob and I could legitimately stock up on Phenergan over a few months without fear of social services knocking on my door wanting to know why I was bulk buying sleeping medicine in all the local pharmacies!
Not long after this trip back to old Blighty, our early intervention services kicked in whilst we were sitting on a waiting list for Harry's Autism assessment. Our caseworker told us she would have Harry back in his own room and sleeping within a few days; the longest it had ever taken her was ten days. Andrew, my husband, and I stood there with unconvinced, knowing faces - not a chance, Harry was going to bring her down! And so two days later Harry was back in his own bedroom and going to sleep without fuss... Again, my old pal Phenergan played his part and we were advised to give him a small dose every night for several weeks until he got into the routine of going to sleep and staying asleep. We were told this was a normal practice by them when helping to get an ASC child to sleep, despite the warnings on the bottle, especially as we were giving him a quarter of the normal dose. We finally discovered what it was to have two children who went to bed every night, without fuss, and slept. Not that I was letting Phenergan out of my house that easily.
The only time this routine is now broken is when Harry's anxiety levels go through the roof for whatever reason. Which is what happened a few months ago. Eventually the relentless trips back to bed weren't worth it and I took to making up a bed on our bedroom floor just to save the hassle of having to do it at 1am. Harry wrestled with our bedroom floor every night in an attempt to get to sleep or drive us nuts, not quite sure which one. Even though he was in our room he still wasn't sleeping, and consequently neither were we. By this point, I had been sleep deprived for over a week which as any sleep deprived mother knows does not make her sane and in fact makes Glenn Close in Fatal Attraction look like Snow White!
Harry's GP had previously prescribed some Melatonin for Harry, telling me he would rather Harry take that for his sleep than Phenergan as he was on other medication at this point. Unfortunately the prescription was for tablet Melatonin which I quickly discovered cannot be crushed, as it reduces it's effectiveness. So I tootled off with my repeat prescription and asked for more of the same but in liquid form. The pharmacist clearly not sensing my desperation told me he couldn't give me liquid Melatonin with a prescription for tablet Melatonin despite my best efforts to chuck a massive two year old tantie screaming 'But whhhhhhhyyyyyy?' at him. I flew into the GP's surgery next door looking, I can only assume, slightly deranged. Our GP kindly whisked me straight into his room - I presume I gave the surgery a bad look - where he wrote me out a script for liquid Melatonin with a scared-looking pharmacist joining us in his office to discuss the correct dosage.
The GP sensing my delirium and worried I was on my way to ending up behind a bin somewhere with my bottle of gin singing 'It's A Fine Life', asked if I needed anything too. However, I told him I was already sorted, I was going hardcore with the Melatonin tablets that Harry couldn't swallow. Failing that, I knew a man called Dan! (For the non-Australians Dan Murphy's is a very cheap alcohol warehouse). I tucked myself up happily in bed that night with a glass of wine and one Melatonin. When one tablet didn't work, the next night I had two! A sleeping tablet that is completely natural and non-addictive is the most rock and roll I am ever likely to get. Fortunately for my husband, I never needed to hit the dizzy heights of three tablets as Harry's liquid Melatonin started to work and normal sleep was resumed. Once his new anxiety medication started to kick in, I decided the Melatonin was going to be saved for desperate times. But after four days of two children running around until 8.30pm I decided that was as desperate as I was prepared to let it get!
And so, my new best friend is Melatonin. If you don't know him, he's small, pink and is very fruity. He is worth his weight in gold, literally, he must be liquid gold the amount I have to pay for the smallest amount! But he's worth every cent. I now just need to find an occupation to help pay for the habit. But no offers of bar jobs please, I have to be in bed by 8pm because I need my sleep!
Sleep can be an issue for many ASC children. I know of children who wake up ridiculously early every morning and those who walk around in the middle of the night. Others, like Harry, find the mere act of dropping off to sleep impossible. Their minds are racing with anxiety and they are unable to switch off. Routines are crucial with all children but even more so with ASC children. Strict bedtime rituals and practices can make the difference between that child wanting to go to bed and sleeping or a parent spending many hours persuading them they have to go to bed.
Sleep has always been an issue for Harry and hindsight is a wonderful thing in this respect. The day Harry was born he stood out from the other babies in the small four-bed ward. He refused to go to sleep at night except in my arms, and that is where he stayed for the next five weeks. It is clear to see now that Harry was born anxious and the midwife who suggested I pop him into bed with me on his first night in this World, will always have my gratitude. Other less kind midwives were to tell me that it was the fact I let Harry be cuddled which caused his inability to sleep in a crib and who started my constant train of thought over the coming months and years of 'what did I do wrong to cause him to be like this?'
The beauty of having a child in the UK, where Harry was born, is that they can sleep in a pram outside without fear of creepy crawlies or any other wildlife sneaking in for a cuddle. Harry would sleep (ha!) outside in his pram by day and in bed with me at night. Of course the only one sleeping was him because I wasn't sleeping for fear of turning him into mash potato. After five weeks, he progressed to his crib which was placed right next to me where he started sleeping through the whole night and I was smugger than a smug person from smugsville.
That was until our first camping trip when he was four months old. Again, with the beauty of hindsight, it was clear to see that Harry didn't like change as his sleeping from that camping trip to this day is the first thing to go when his anxiety increases. He slept in our room for a lot longer than other babies usually do and once he started kamikazing out of his cot at twenty months, we were his hostages despite the fact he was the one behind the safety gate. He would stand screaming at the gate on his door until we would eventually find him fast asleep on the floor behind his gate. It was heartbreaking watching him scream but we heeded the maternal nurse's advice not to give in to him, he would learn to settle and if we gave in, he would keep doing it. He kept doing it anyway!
We moved to Australia when Harry was two and a half. It was at this point a new friend introduced me to the wonders of Phenergan and I became a convert. Apparently, it made me hyper as a toddler so I tried some on Harry before giving him a full dose but it soon became my saviour in a house where a toddler fought sleep regularly. It didn't help that we moved to a country where we discovered houses were built with the master bedroom well away from the other bedrooms so the parents could have a retreat. Subsequently our living room became Harry's bedroom as it was next to ours - and our parent's retreat became the Island of Sodor!
Phenergan continued to be my best friend especially on long haul flights back to the UK when the story of Goldilocks and the Two Bears was re-enacted by me and the two boys. One spoon for baby bear, one bigger spoon for middle sized bear and one whopping great spoon - never mind I'll just drink it out of the bottle - for Mummy Bear. On one flight, we all had five hours solid sleep in economy class, something unheard of I think - ever. When we landed in Manchester at 6.30am we were all so bright-eyed, our relatives couldn't believe that a) we had all just travelled twenty-three hours and b) I had done it alone with two small children. I have to say, Singapore Airlines were truly amazing on this flight looking after me so well, I claimed I would fly with two children on my own again any time. At this point Elliot was eighteen months old and I remembered what Harry was like travelling at two and a half and decided I valued my sanity too much and we'd leave the next long haul until Elliot was at least four and he had discovered the wonders of Sponge-Bob and I could legitimately stock up on Phenergan over a few months without fear of social services knocking on my door wanting to know why I was bulk buying sleeping medicine in all the local pharmacies!
Not long after this trip back to old Blighty, our early intervention services kicked in whilst we were sitting on a waiting list for Harry's Autism assessment. Our caseworker told us she would have Harry back in his own room and sleeping within a few days; the longest it had ever taken her was ten days. Andrew, my husband, and I stood there with unconvinced, knowing faces - not a chance, Harry was going to bring her down! And so two days later Harry was back in his own bedroom and going to sleep without fuss... Again, my old pal Phenergan played his part and we were advised to give him a small dose every night for several weeks until he got into the routine of going to sleep and staying asleep. We were told this was a normal practice by them when helping to get an ASC child to sleep, despite the warnings on the bottle, especially as we were giving him a quarter of the normal dose. We finally discovered what it was to have two children who went to bed every night, without fuss, and slept. Not that I was letting Phenergan out of my house that easily.
The only time this routine is now broken is when Harry's anxiety levels go through the roof for whatever reason. Which is what happened a few months ago. Eventually the relentless trips back to bed weren't worth it and I took to making up a bed on our bedroom floor just to save the hassle of having to do it at 1am. Harry wrestled with our bedroom floor every night in an attempt to get to sleep or drive us nuts, not quite sure which one. Even though he was in our room he still wasn't sleeping, and consequently neither were we. By this point, I had been sleep deprived for over a week which as any sleep deprived mother knows does not make her sane and in fact makes Glenn Close in Fatal Attraction look like Snow White!
Harry's GP had previously prescribed some Melatonin for Harry, telling me he would rather Harry take that for his sleep than Phenergan as he was on other medication at this point. Unfortunately the prescription was for tablet Melatonin which I quickly discovered cannot be crushed, as it reduces it's effectiveness. So I tootled off with my repeat prescription and asked for more of the same but in liquid form. The pharmacist clearly not sensing my desperation told me he couldn't give me liquid Melatonin with a prescription for tablet Melatonin despite my best efforts to chuck a massive two year old tantie screaming 'But whhhhhhhyyyyyy?' at him. I flew into the GP's surgery next door looking, I can only assume, slightly deranged. Our GP kindly whisked me straight into his room - I presume I gave the surgery a bad look - where he wrote me out a script for liquid Melatonin with a scared-looking pharmacist joining us in his office to discuss the correct dosage.
The GP sensing my delirium and worried I was on my way to ending up behind a bin somewhere with my bottle of gin singing 'It's A Fine Life', asked if I needed anything too. However, I told him I was already sorted, I was going hardcore with the Melatonin tablets that Harry couldn't swallow. Failing that, I knew a man called Dan! (For the non-Australians Dan Murphy's is a very cheap alcohol warehouse). I tucked myself up happily in bed that night with a glass of wine and one Melatonin. When one tablet didn't work, the next night I had two! A sleeping tablet that is completely natural and non-addictive is the most rock and roll I am ever likely to get. Fortunately for my husband, I never needed to hit the dizzy heights of three tablets as Harry's liquid Melatonin started to work and normal sleep was resumed. Once his new anxiety medication started to kick in, I decided the Melatonin was going to be saved for desperate times. But after four days of two children running around until 8.30pm I decided that was as desperate as I was prepared to let it get!
And so, my new best friend is Melatonin. If you don't know him, he's small, pink and is very fruity. He is worth his weight in gold, literally, he must be liquid gold the amount I have to pay for the smallest amount! But he's worth every cent. I now just need to find an occupation to help pay for the habit. But no offers of bar jobs please, I have to be in bed by 8pm because I need my sleep!
Monday, 31 October 2011
What About Me?
Sibling arguments happen regardless of any neurological conditions amongst the children. When a child is on the receiving end of their sibling's behaviour associated with an Autism Spectrum Condition which they do not comprehend, all out war erupts and mothers everywhere don their bikinis and high heels and walk around the kitchen with their 'Round 2' placards. Dividing attention between more than one child is not easy at the best of times. When you have a child who needs more of a parent's time due to a disability, a sibling may feel jealous and resentful, especially when that disability is hidden and the sibling cannot 'see' why that child is getting treated differently. Parents are faced with a difficult task, wondering how to handle a non-ASC child's needs so they don't ask in later years, what about me? I am aware of these needs as, not only am I a mother of two boys, one of whom does not have Aspergers, I am also a sibling myself. However, the situation I am in is very different to the one my Mother was in twenty odd years ago.
It can be quite startling when you realise that the diagnosis of your child with ASC is not necessarily the end of your search and find mission but occasionally it can be the beginning of many more. When Harry was diagnosed two months before his sixth birthday it soon became abundantly clear he was not the first person in my family to have ASC but merely the first to be diagnosed. Which is bizarre when you think that he was, at the time, the second youngest in my entire family. A few months after his diagnosis, I attended my first Tony Attwood conference and during the course of the day my jaw dropped progressively closer to the floor as he 'diagnosed' several members of my family. Whilst mopping up the dribble from my chin, for every comment he made, I popped the name of a member of my family next to it. Just by the placing of one piece, a lifetime's puzzle suddenly made the family picture much clearer.
Whilst there had been obvious issues with my younger sister since she was very young, I was more than a little dumbfounded when the penny dropped that after years of referring to herself as 'mentally ill', Aelswith, was more than likely a fully paid up member of the Asperger's fan club too. This discovery led to lots of feelings of guilt and also relief that I could now understand her, when for the best part of twenty years, I had not. It also meant, as a mother, paying attention to the needs of my youngest son, Elliot, had to be pushed to high priority to help him cope with and understand being the brother of someone with Aspergers.
Anger, frustration and sometimes violence are part and parcel of the negative symptoms associated with ASC. When an ASC child is having a meltdown for whatever reason, a parent does not have the luxury of using Super Nanny methods of discipline, being sent to the naughty spot will result in the younger ASC child having no clue about what they are doing there and will proceed to headbutt walls and scream even more than they were before - I speak from experience. Faced with the same situation with a non-ASC child, they would quite possibly be told to stop their unacceptable behaviour immediately, put to time out and be given a more severe consequence than their ASC sibling resulting in one very confused child. A parent obviously understands why the rules of discipline have to be different, but the non-ASC child does not. Siblings will see it as one rule for them and one rule for the other.
The same can be said for rewarding our children. Every non-typical milestone an ASC child reaches is so huge we reward it with lavish attention. A non-ASC child may feel resentful that their achievements are not rewarded as frequently or for seemingly minuscule efforts. A non-ASC sibling will eventually become aware that family life and the attention they receive from their parents is all linked to their ASC sibling. Outings are organised according to what the ASC child can cope with, parents attention at home may be focussed on the ASC child because of their needs at home, toys and possessions are ruined and all this time the non-ASC child is hiding around corners with a video camera recording evidence for the almighty tantrum that is waiting to explode Kevin style 'you all hate me, it's not fair'!
It's easy to fall into the habit of making the ASC child's needs higher priority than their siblings and as parents we have to be conscious of this. We may fall into a routine and adopt the attitude that our ASC child has no choice and needs us but our other children will be fine. We may not necessarily realise what their needs are or we may simply not know how to help them. Elliot, my youngest, has spent his entire life as the main target when Harry can't cope and up until recently, my focus has been on keeping him and Buzz Lightyear safe. Recently, he has become more aware of the differences in his life to Harry and has been asking why he doesn't get the 'day off' like Harry? And when I do have to take him with me to medical appointments, he wants to know why he's not going in too? I am now very conscious of the change in his needs and how I can best help.
Talking to a non-ASC child is paramount, explaining age-appropriately about their ASC sibling is a necessity. The more information they have to able to understand their sibling will benefit them as they grow older. They need to understand that their sibling gets so much attention because of their condition, not because they are any more loved. They need to understand ASC makes their sibling want to attack them for touching one of their toys but will happily chop off the head of their favourite teddy for no apparent reason. We must be seen to understand their upset at this and not dismiss their feelings.
We may find adopting the same discipline methods makes as much sense for the non-ASC child as it does their ASC sibling and will lead to less feelings of resentment. Similarly we need to make the number of opportunities for reward the same for all children, but explaining to the non-ASC child that all children have different capabilities and, therefore, reasons for rewards are individual. Whilst we will always ensure our ASC child's needs are met, they do not always have to be met by both or either of the parents. On occasions we have to allow for our non-ASC child to feel special, we may have to create these opportunities and we most certainly must allow for it during moments of great importance in their life.
The problem with family days out are that quite often, the day will be determined by the ASC child, and eventually the non-ASC child will get fed up with playing second fiddle. Of course, a child's needs can be met and factored into a day if you know what those needs are likely to be in the first place. But it often works in families with more than one child to divide and conquer. Recently Harry got to spend all day with my husband Andrew at the Gold Coast 600 watching cars go round and round a track! I meanwhile, thinking I had got the better deal, spent all day at Seaworld with Elliot letting him feel special by choosing everything we did, he was ecstatic. So we started off looking at penguins. Then later we went to look at the penguins. After that we went to see the penguins. Next day when I took the two big boys back to the race track Elliot threw a massive hissy fit when he found out we weren't going back to Seaworld! 'Yeah, not gonna happen. Special time's over babe, Mummy's hitting the beach with a book'! I of course read two pages as my time was spent stopping Japanese tourists from running off with him for their photo shoots. Note to all Japanese tourists, kidnapping is not the way to make a non-ASC child feel special!
Younger children simply don't want to feel left out. Watching Harry have his medicine is seen by Elliot as Harry getting more attention and doing something special with Andrew or me. Ironically, Harry hates taking his medicine and calls us all the names under the sun and thinks we have a vendetta against him because Elliot doesn't have to take it. By including some strawberry flavour to some milk at night so that Elliot gets to take his 'medicine' has made him feel included. Mummy likes to make it a family occasion and has her medicine in a glass with lemon and ice, with a double shot of medicine for those days when Harry tells me 'he knows I wish he was never born'!
Recent changes to medical rebates for those on the Mental Health Care Plan in Australia have resulted in the amount of psychologist sessions allowed per year being dropped from eighteen to ten. Which is ridiculous when you consider Aspergers is most likely to be diagnosed after the age of five and the Autism funding available in Australia cuts off at the age of six. Also taking into account, psychology is probably the most beneficial therapy for those with Asperger's, without it, I would be sitting in a corner singing happy clappy songs. Which brings me to a way to combat the reduction of psychologist sessions. Parents themselves can be referred under the Mental Health Care Plan, and quite frankly some of us need to be! This way there will be a total of twenty sessions available which means the child with ASC gets as many sessions as before and gives parents the option to use some for a sibling. Non-ASC siblings need to feel they are not alone and may need a professional to talk to them about how it feels to be the sibling of someone with ASC. This will then combat the issue I have with Elliot seeing these appointments as 'days off' for Harry and he will get to have them too.
Elliot will of course benefit from the fact that we actually have a reason for Harry's behaviour and, in time, we will be able to explain this to him, as like me, he cannot see his sibling's disability. I know I talked last time about differabilities and being positive about Autism Spectrum Conditions, but when a person's condition affects their life and the lives of the rest of the family, with there being no explanation or useful help available, on this occasion it is fair to say it is disability. Obviously, helping a sibling understand and cope, can be helped greatly if the parents themselves actually know what they are dealing with.
The old saying 'if we knew then what we know now', I know is used by my parents, my elder sister and myself. When real problems first surfaced with Aelswith, my physically disabled Grandmother had just moved in with my parents following a near fatal car accident and my Father was running a small business from home. I honestly don't know how my Mum did not end up in Betty Ford, knowing what I know now about having a child with high needs, never mind the rest of what she had to deal with. My Mum, I know, feels guilty about what she 'didn't' do to find out about Aelswith's condition. I honestly don't know where she could have turned back in the early 90's with Asperger's only being on the verge of being a recognised medical condition, there was no internet and professionals clearly had no idea and simply wanted to label her with an eating disorder, the disorder of the 90's. We all knew what she wasn't i.e. anorexic or bulimic. Yes she had ribs that stuck out and hip bones poking you in the eye but she was also very tall with legs up to her armpits that were slim but certainly not skeletal. And yes we called her lots of names for having those legs. She also ate crisps and chocolate for breakfast and her love of toilets was not due to her wanting to stick her head down one! But unable to tell us what she was, she was stuffed full of prozac to help her panic attacks and sent on her way.
I imagine it's difficult to be understanding all the time even when a sibling does have a diagnosis. But when there is no diagnosis, the problems that creates in a family are phenomenal. There were many occasions when I could have happily throttled my sister. I was, at the time, an older teenager myself and fairly level headed for my age but I could not cope with the demands my sister made on my Mum, in particular, and the way the whole family life seemed to revolve around her. At the time I was of course clueless about how debilitating it was for her and how powerless my Mum must have felt trying to help her. In her teenage years Aelswith's anxiety and need for routine led to her not going anywhere unless she knew where every single toilet was. My Mum literally had to plot her route to walk down to the town and go via every single public convenience so that Aelswith would leave the house. And if she had to go home, she had to go home now or she would have a panic attack. To get Aelswith out of the house and into a car my elder sister, Eadwina, and I thought we were helping by suggesting we took a bucket in the boot of the car! On the occasions when we did get her in the car, it became a running joke to let her know 'we've got the bucket'!
Anxiety has ruled Aelswith's life but where I once thought she was being selfish, I can now understand some of how she feels as Harry is so much like her. But I will call her selfish when it comes to her career. She enrolled on a music course at the Academy of Contemporary Music in Guildford where her classmate was one Newton Faulkner. She loved every minute of this course but crippled by stage fright, after she qualified she became a vocal coach whilst Newton apparently went on to sell a couple of records... First I miss my chance of going to the Oscars, now because of my sister, I miss out on the MTV awards!
Aelswith is still fighting to have an official assessment, having been told at the grand old age of 33, what does she need to know now for? Clearly psychologists aren't qualified to help anyone over the age of 20! Whilst Aelswith will always be the annoying little sister with habits I may now understand but which still drive me bonkers, doesn't she deserve the right to know what she's dealing with? Yes, it's too late for early intervention or for her family to have understood her when she was growing up. But doesn't she deserve for us, and others, to understand her now? In the meantime, however, Aelswith is available for weddings, funerals and parties. Please send your booking requests along with a detailed map of all the toilets in the area. Eadwina and I will provide the bucket!
It can be quite startling when you realise that the diagnosis of your child with ASC is not necessarily the end of your search and find mission but occasionally it can be the beginning of many more. When Harry was diagnosed two months before his sixth birthday it soon became abundantly clear he was not the first person in my family to have ASC but merely the first to be diagnosed. Which is bizarre when you think that he was, at the time, the second youngest in my entire family. A few months after his diagnosis, I attended my first Tony Attwood conference and during the course of the day my jaw dropped progressively closer to the floor as he 'diagnosed' several members of my family. Whilst mopping up the dribble from my chin, for every comment he made, I popped the name of a member of my family next to it. Just by the placing of one piece, a lifetime's puzzle suddenly made the family picture much clearer.
Whilst there had been obvious issues with my younger sister since she was very young, I was more than a little dumbfounded when the penny dropped that after years of referring to herself as 'mentally ill', Aelswith, was more than likely a fully paid up member of the Asperger's fan club too. This discovery led to lots of feelings of guilt and also relief that I could now understand her, when for the best part of twenty years, I had not. It also meant, as a mother, paying attention to the needs of my youngest son, Elliot, had to be pushed to high priority to help him cope with and understand being the brother of someone with Aspergers.
Anger, frustration and sometimes violence are part and parcel of the negative symptoms associated with ASC. When an ASC child is having a meltdown for whatever reason, a parent does not have the luxury of using Super Nanny methods of discipline, being sent to the naughty spot will result in the younger ASC child having no clue about what they are doing there and will proceed to headbutt walls and scream even more than they were before - I speak from experience. Faced with the same situation with a non-ASC child, they would quite possibly be told to stop their unacceptable behaviour immediately, put to time out and be given a more severe consequence than their ASC sibling resulting in one very confused child. A parent obviously understands why the rules of discipline have to be different, but the non-ASC child does not. Siblings will see it as one rule for them and one rule for the other.
The same can be said for rewarding our children. Every non-typical milestone an ASC child reaches is so huge we reward it with lavish attention. A non-ASC child may feel resentful that their achievements are not rewarded as frequently or for seemingly minuscule efforts. A non-ASC sibling will eventually become aware that family life and the attention they receive from their parents is all linked to their ASC sibling. Outings are organised according to what the ASC child can cope with, parents attention at home may be focussed on the ASC child because of their needs at home, toys and possessions are ruined and all this time the non-ASC child is hiding around corners with a video camera recording evidence for the almighty tantrum that is waiting to explode Kevin style 'you all hate me, it's not fair'!
It's easy to fall into the habit of making the ASC child's needs higher priority than their siblings and as parents we have to be conscious of this. We may fall into a routine and adopt the attitude that our ASC child has no choice and needs us but our other children will be fine. We may not necessarily realise what their needs are or we may simply not know how to help them. Elliot, my youngest, has spent his entire life as the main target when Harry can't cope and up until recently, my focus has been on keeping him and Buzz Lightyear safe. Recently, he has become more aware of the differences in his life to Harry and has been asking why he doesn't get the 'day off' like Harry? And when I do have to take him with me to medical appointments, he wants to know why he's not going in too? I am now very conscious of the change in his needs and how I can best help.
Talking to a non-ASC child is paramount, explaining age-appropriately about their ASC sibling is a necessity. The more information they have to able to understand their sibling will benefit them as they grow older. They need to understand that their sibling gets so much attention because of their condition, not because they are any more loved. They need to understand ASC makes their sibling want to attack them for touching one of their toys but will happily chop off the head of their favourite teddy for no apparent reason. We must be seen to understand their upset at this and not dismiss their feelings.
We may find adopting the same discipline methods makes as much sense for the non-ASC child as it does their ASC sibling and will lead to less feelings of resentment. Similarly we need to make the number of opportunities for reward the same for all children, but explaining to the non-ASC child that all children have different capabilities and, therefore, reasons for rewards are individual. Whilst we will always ensure our ASC child's needs are met, they do not always have to be met by both or either of the parents. On occasions we have to allow for our non-ASC child to feel special, we may have to create these opportunities and we most certainly must allow for it during moments of great importance in their life.
The problem with family days out are that quite often, the day will be determined by the ASC child, and eventually the non-ASC child will get fed up with playing second fiddle. Of course, a child's needs can be met and factored into a day if you know what those needs are likely to be in the first place. But it often works in families with more than one child to divide and conquer. Recently Harry got to spend all day with my husband Andrew at the Gold Coast 600 watching cars go round and round a track! I meanwhile, thinking I had got the better deal, spent all day at Seaworld with Elliot letting him feel special by choosing everything we did, he was ecstatic. So we started off looking at penguins. Then later we went to look at the penguins. After that we went to see the penguins. Next day when I took the two big boys back to the race track Elliot threw a massive hissy fit when he found out we weren't going back to Seaworld! 'Yeah, not gonna happen. Special time's over babe, Mummy's hitting the beach with a book'! I of course read two pages as my time was spent stopping Japanese tourists from running off with him for their photo shoots. Note to all Japanese tourists, kidnapping is not the way to make a non-ASC child feel special!
Younger children simply don't want to feel left out. Watching Harry have his medicine is seen by Elliot as Harry getting more attention and doing something special with Andrew or me. Ironically, Harry hates taking his medicine and calls us all the names under the sun and thinks we have a vendetta against him because Elliot doesn't have to take it. By including some strawberry flavour to some milk at night so that Elliot gets to take his 'medicine' has made him feel included. Mummy likes to make it a family occasion and has her medicine in a glass with lemon and ice, with a double shot of medicine for those days when Harry tells me 'he knows I wish he was never born'!
Recent changes to medical rebates for those on the Mental Health Care Plan in Australia have resulted in the amount of psychologist sessions allowed per year being dropped from eighteen to ten. Which is ridiculous when you consider Aspergers is most likely to be diagnosed after the age of five and the Autism funding available in Australia cuts off at the age of six. Also taking into account, psychology is probably the most beneficial therapy for those with Asperger's, without it, I would be sitting in a corner singing happy clappy songs. Which brings me to a way to combat the reduction of psychologist sessions. Parents themselves can be referred under the Mental Health Care Plan, and quite frankly some of us need to be! This way there will be a total of twenty sessions available which means the child with ASC gets as many sessions as before and gives parents the option to use some for a sibling. Non-ASC siblings need to feel they are not alone and may need a professional to talk to them about how it feels to be the sibling of someone with ASC. This will then combat the issue I have with Elliot seeing these appointments as 'days off' for Harry and he will get to have them too.
Elliot will of course benefit from the fact that we actually have a reason for Harry's behaviour and, in time, we will be able to explain this to him, as like me, he cannot see his sibling's disability. I know I talked last time about differabilities and being positive about Autism Spectrum Conditions, but when a person's condition affects their life and the lives of the rest of the family, with there being no explanation or useful help available, on this occasion it is fair to say it is disability. Obviously, helping a sibling understand and cope, can be helped greatly if the parents themselves actually know what they are dealing with.
The old saying 'if we knew then what we know now', I know is used by my parents, my elder sister and myself. When real problems first surfaced with Aelswith, my physically disabled Grandmother had just moved in with my parents following a near fatal car accident and my Father was running a small business from home. I honestly don't know how my Mum did not end up in Betty Ford, knowing what I know now about having a child with high needs, never mind the rest of what she had to deal with. My Mum, I know, feels guilty about what she 'didn't' do to find out about Aelswith's condition. I honestly don't know where she could have turned back in the early 90's with Asperger's only being on the verge of being a recognised medical condition, there was no internet and professionals clearly had no idea and simply wanted to label her with an eating disorder, the disorder of the 90's. We all knew what she wasn't i.e. anorexic or bulimic. Yes she had ribs that stuck out and hip bones poking you in the eye but she was also very tall with legs up to her armpits that were slim but certainly not skeletal. And yes we called her lots of names for having those legs. She also ate crisps and chocolate for breakfast and her love of toilets was not due to her wanting to stick her head down one! But unable to tell us what she was, she was stuffed full of prozac to help her panic attacks and sent on her way.
I imagine it's difficult to be understanding all the time even when a sibling does have a diagnosis. But when there is no diagnosis, the problems that creates in a family are phenomenal. There were many occasions when I could have happily throttled my sister. I was, at the time, an older teenager myself and fairly level headed for my age but I could not cope with the demands my sister made on my Mum, in particular, and the way the whole family life seemed to revolve around her. At the time I was of course clueless about how debilitating it was for her and how powerless my Mum must have felt trying to help her. In her teenage years Aelswith's anxiety and need for routine led to her not going anywhere unless she knew where every single toilet was. My Mum literally had to plot her route to walk down to the town and go via every single public convenience so that Aelswith would leave the house. And if she had to go home, she had to go home now or she would have a panic attack. To get Aelswith out of the house and into a car my elder sister, Eadwina, and I thought we were helping by suggesting we took a bucket in the boot of the car! On the occasions when we did get her in the car, it became a running joke to let her know 'we've got the bucket'!
Anxiety has ruled Aelswith's life but where I once thought she was being selfish, I can now understand some of how she feels as Harry is so much like her. But I will call her selfish when it comes to her career. She enrolled on a music course at the Academy of Contemporary Music in Guildford where her classmate was one Newton Faulkner. She loved every minute of this course but crippled by stage fright, after she qualified she became a vocal coach whilst Newton apparently went on to sell a couple of records... First I miss my chance of going to the Oscars, now because of my sister, I miss out on the MTV awards!
Aelswith is still fighting to have an official assessment, having been told at the grand old age of 33, what does she need to know now for? Clearly psychologists aren't qualified to help anyone over the age of 20! Whilst Aelswith will always be the annoying little sister with habits I may now understand but which still drive me bonkers, doesn't she deserve the right to know what she's dealing with? Yes, it's too late for early intervention or for her family to have understood her when she was growing up. But doesn't she deserve for us, and others, to understand her now? In the meantime, however, Aelswith is available for weddings, funerals and parties. Please send your booking requests along with a detailed map of all the toilets in the area. Eadwina and I will provide the bucket!
Thursday, 20 October 2011
What's In A Word?
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...)!
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...)!
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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