Now there is a vicious rumour that I'm a little bit partial to the crazy biscuits. Ok, it's less rumour, more fact but let's stick to the point. As with most things in life, there is a time and a place for things and when it comes to my children, my marbles are well and truly lined up and ready to roll. I am an intelligent woman with bone fide initials after my name and everything! People who have only met me post-children are surprised to hear this as I no longer work in the area I studied long and hard for. The presumption being if you are a stay-at-home mum, as I now am, you aren't capable of much else and to put it harshly, you are brainless. This presumption doesn't bother me so much, it's the fact that as 'just' a Mother you aren't taken very seriously. As we all know, when it comes to our children with hidden disabilities we struggle as it is to be heard. When you try telling somebody, anybody, that there is something going on with your child, with no credentials to back you up (the several years mothering qualifications you possess are not worth the gin receipts they are written on), you just as well sign yourself up to the Münchhausen Mumma's Club.
I was dubbed a Münchhausen mother with my eldest son for quite a few
years, and still to this day there are very few people who get just how
much his conditions really affect him. Back in the early days, I didn't
really know what I was doing and I didn't have the knowledge to prove
that I knew what I was talking about. Relationships with professionals
and friends suffered as a result. To others I was dog in a human body,
clearly barking. It took over two years and two assessments for him to be diagnosed with Aspergers, longer for ADHD, three years to be told he had a severe language delay and he was only diagnosed with Sensory Processing Disorder and auditory processing problems earlier this year.
At the end of last year I started asking questions about my youngest son. The plus side of having been there, done that, got the gin subscription
is you know which section of the library to head to when your inner
Sherlock rears his head. You know which professionals to approach and
you know, your instincts having been proved right once already, you are
not prepared to be labelled a Münchhausen Mumma for a second time.
Sadly, in the absence of a visual difference, the signs that there is
something else going on are not obvious to some people and, therefore,
the problem is in the head of the mother.
Interestingly the rate of Münchhausen's is 2 children out of 100,000 have a mother making up their conditions for attention. Which given 1 in 10 school-aged children have an ADHD diagnosis and 1 in 4 boys have an ASC diagnosis, begs the question - why is it presumed the mother has Münchhausen's before it being considered that she might just have a very real problem occurring? We don't hear someone saying when we complain of a headache that we need to get to hospital quick because we're obviously suffering from an aneurysm do we?
The bonus of having a child already diagnosed with these conditions is
that you are likely to be taken more seriously, the gene factor carrying
kudos over the loopy factor. But that's not to say you remain
completely unscathed. Whilst many people were prepared to listen to me
this time around, a few still rolled their eyes. God bless my
marvellous paediatrician who saw my son almost immediately and started
the process of elimination.
Of course, if you'd asked me a year ago did my son have any obvious signs of the conditions his brother had been diagnosed with, I would have said no. The problem with having a child already diagnosed with hidden conditions, I have discovered,
is that you are alert to similarities cropping up in your other children and
if the same symptoms don't arise, you think you're home and clear. Just to add to the confusion, a few similar behaviours may be presumed to have been learnt or a coincidence. So the ignorance continues. The first six years of my sons' existences were as similar as the lives led by a nun and a prostitute. Son with the long legs is hyper, obsessed with transport, very easily angered, runs like a whippet, clever in his areas of knowledge (OMG if anyone wants to know anything about the Olympics I have your boy), hates red capsicum, loves peas. The short one is not hyper except verbally, wouldn't give you tuppence for a Thomas train set, placid but emotional, runs like his mother (trust me, it's not pretty), very intelligent, loves capsicum, hates peas!
As suspected, (give myself an honourary doctorate in mothering!) a few
weeks ago I went from being the mother of one child with ADHD, Sensory
Processing Disorder, anxiety, language delays and co-ordination
difficulties to the mother of two. Whilst we hold the theoretical knowledge that these conditions affect children differently, seeing just how differently they can affect siblings has been a real learning curve for me. One son has the hyperactive form of ADHD, the other the inattentive type. It doesn't mean one child doesn't have ADHD, it just means his symptoms are different. This applies as much to siblings as it does to children in general. How many times have you heard 'oh well he doesn't do that, so he can't be' or 'but she can do this and kids with XYZ can't do that'. Cue more Münchhausen Mumma subscriptions.
Thankfully, the process this time has taken
several months as opposed to
several years and the short one is receiving early intervention which
we know is so crucial when they are young. The point of all this is, of course, to tell any mother out there working on pure gut instinct to trust themselves and release that inner Sherlock! If it helps to dream of Robert Downey Jnr a little then so be it. Sure we sometimes get it wrong (but only a little bit) and not everybody out there is determined to label all Mothers as in need of a lobotomy. But remember the odds are in your favour.
Oh and in case you were wondering, my re-subscription to the Münchhausen Mumma's Club has been refused. Apparently to join you have to be more mentally unstable and less physically unstable due to the effects of alcohol...
Autism Angel
Wednesday, 24 October 2012
Wednesday, 18 July 2012
Please Dear God Are We Nearly There Yet???
What does a person taken by the men in white coats to a lunatic asylum for being a few slices short of a full loaf and a person who has an ASC/ADHD child with a passion for A380's and then takes that child on an A380 for a 24 hour flight have in common? Correct. They are both insane. I am of course referring to myself in the latter example, although how I have escaped being the former remains a mystery to me. Not that the lunacy ended there. The option was there to not take the children. We didn't take it. Another tick on the Facebook Are You A Lunatic? Quiz with an affirmative.
I can only imagine travelling with any young children is painful, the mere thought of sitting in a car traversing the length and breadth of the UK in a small car has me wincing. But that is exactly when Ben Hatch did. I am yet to read what exactly possessed him to do such a thing but I look forward to comparing our travel experiences and am assured by Terry Wogan it is 'utterly delightful'. And Terry's word is good enough for me - oh how I miss him. The joys of the Internet meant I got to listen to Terry's Radio 2 morning show in Australia whilst making tea. Since he retired I rely on wine drinking to entertain me. My lush-like state is entirely Terry's fault. However, I digress. Ben's book is called Are We Nearly There Yet? 8000 Misguided Miles Round Britain In A Vauxhall Astra. For those of you down under, Vauxhall is what we know as Holden. Ben not only travelled around in a very small car, but he did it with two very small children.
Taking any child on any kind of long journey requires careful planning and a serious head examination. Entertainment needs to be factored in, not to mention enough food to feed an Army and plenty of incentives to curb any outbreak of violence between siblings. When you add into the mix a child with additional issues, you invariably have to add in additional safety nets to deal with their extra requirements. When you take a child with ADHD on a plane journey the safety net is of course ADHD meds. But what to do when you want that child to sleep and the medication keeps them awake and alert, (the whole point of the medication after all)? You do as we did and fly without a parachute in the hope the excitement of being on an A380 will eventually wear off and sleep will reign supreme. It didn't. Resulting in Zebedee sitting beside me for 14. Long. Hours. Another tick. Why not just tick all the boxes and skip to the end and bring up a full flashing YOU A CRAZY PERSON results screen.
Whilst we could do nothing to curb the excitement caused by our mode of transport, Emirates were all too obliging to show us around the entire A380 finishing off with a trip to the cock-pit. This may not have produced sleep-inducing hormones but it at least did curtail the curiosity of whether or not the plane was built as reported. The other joy of decent airlines is that entertainment is un-ending. If the choice of films didn't keep the boys occupied for several sleepless hours, the games did. Emirates are also to be recommended for their child meals which include the usual foil wrapped delights but also, specifically for children, a snack box with lots of goodies in, to stave off the inevitable starvation that children so frequently suffer with minutes after eating a full meal.
If you find yourself travelling with a sensory seeking child, like us, you will know containing a child in the human equivalent of a tin can for several hours is like containing a jack-in-the-box. In this regard I can highly recommend the travelators at airports. We sat close to one in Dubai airport and made said child run up and down, up and down, up and down. You get the picture.
The reason for putting ourselves through this was obvious, they got to see family they had not seen in years and we got to give them a life experience travelling the World. Well a bit of Europe but let's not get pedantic. The trip was a partial work trip organised by Renault. As part of my husband's job he gets to take part in Managers trips on occasion. This year's experience saw us gadding around in the South of France sans enfants (crazy person reversal!) pretending to be A listers. The experience was so authentic they even laid on paparazzi at Nice airport. I'm sure the photos would have been much better if Eva Longoria hadn't stuck her beak in them but she was so small I'm sure they only photographed her enormous sunglasses whilst taking my picture. Continuing in A lister mode whilst holding my award (ok glass of wine!) I would like to thank my Mother without whom none of this would have been possible. I thank her to heaven and back for being game enough (again) to take my offspring for the entire time.
Our itinerary involved activities which were Aspie Man heaven, riding Harley Davidsons, driving Ferrari's, being passengers in vintage cars, sailing catamarans etc. But I won't complain, for the women the bonus was that this was all taking place on the Cote D'Azur where we could indulge in our fantasy of pretending to be Grace Kelly. That was of course not the real bonus of the trip, Sebastien the French chef was the real bonus. Only kidding. When these trips occur, for five whole days I get to be sane. I don't have to deal with ASC meltdowns or demands and I can give my eyes a rest by not being on constant alert for hyperactive children. I am allowed to turn my brain off, so to speak. I also have the privilege of watching my husband relax and revert to the man I met many years ago who laughed and played the joker all the time. Watching him flirt with the tour guide, as ironic as it may sound, was a highlight of this recent trip. His stress is partly work related of course but there is no denying he finds walking into a mad house night after night a little testing and the strains of having a son with ASC and ADHD undoubtedly affects him too.
These trips naturally come to an end and I transform from Grace Kelly having her dinner served to her in Monte Carlo into Marge Simpson making the dinner in a very particular way for Bart. The pain of the flight home becomes a reality and relatively pain-free travel through France and to various parts of England by car courtesy of Ritalin is consigned to a distant memory. Next time I will be flying with my parachute, not that I plan to travel around Europe with my children again any time soon - the memories of the flight are still too raw...
So back to Ben travelling around Great Britain in an Astra, the very least we can do is buy enough of his books (which are available on Amazon both sides of the Globe) to allow him to buy a Renault Espace for his next escapade. Which given he owes me a favour he could combine with a trip down under and a follow up book called Are We Nearly There Yet Cobber? Driving Around Australia With Two Children Under The Age Of Ten And A Kangaroo In A Renault Espace. Just a thought Ben...!
I can only imagine travelling with any young children is painful, the mere thought of sitting in a car traversing the length and breadth of the UK in a small car has me wincing. But that is exactly when Ben Hatch did. I am yet to read what exactly possessed him to do such a thing but I look forward to comparing our travel experiences and am assured by Terry Wogan it is 'utterly delightful'. And Terry's word is good enough for me - oh how I miss him. The joys of the Internet meant I got to listen to Terry's Radio 2 morning show in Australia whilst making tea. Since he retired I rely on wine drinking to entertain me. My lush-like state is entirely Terry's fault. However, I digress. Ben's book is called Are We Nearly There Yet? 8000 Misguided Miles Round Britain In A Vauxhall Astra. For those of you down under, Vauxhall is what we know as Holden. Ben not only travelled around in a very small car, but he did it with two very small children.
Taking any child on any kind of long journey requires careful planning and a serious head examination. Entertainment needs to be factored in, not to mention enough food to feed an Army and plenty of incentives to curb any outbreak of violence between siblings. When you add into the mix a child with additional issues, you invariably have to add in additional safety nets to deal with their extra requirements. When you take a child with ADHD on a plane journey the safety net is of course ADHD meds. But what to do when you want that child to sleep and the medication keeps them awake and alert, (the whole point of the medication after all)? You do as we did and fly without a parachute in the hope the excitement of being on an A380 will eventually wear off and sleep will reign supreme. It didn't. Resulting in Zebedee sitting beside me for 14. Long. Hours. Another tick. Why not just tick all the boxes and skip to the end and bring up a full flashing YOU A CRAZY PERSON results screen.
Whilst we could do nothing to curb the excitement caused by our mode of transport, Emirates were all too obliging to show us around the entire A380 finishing off with a trip to the cock-pit. This may not have produced sleep-inducing hormones but it at least did curtail the curiosity of whether or not the plane was built as reported. The other joy of decent airlines is that entertainment is un-ending. If the choice of films didn't keep the boys occupied for several sleepless hours, the games did. Emirates are also to be recommended for their child meals which include the usual foil wrapped delights but also, specifically for children, a snack box with lots of goodies in, to stave off the inevitable starvation that children so frequently suffer with minutes after eating a full meal.
If you find yourself travelling with a sensory seeking child, like us, you will know containing a child in the human equivalent of a tin can for several hours is like containing a jack-in-the-box. In this regard I can highly recommend the travelators at airports. We sat close to one in Dubai airport and made said child run up and down, up and down, up and down. You get the picture.
The reason for putting ourselves through this was obvious, they got to see family they had not seen in years and we got to give them a life experience travelling the World. Well a bit of Europe but let's not get pedantic. The trip was a partial work trip organised by Renault. As part of my husband's job he gets to take part in Managers trips on occasion. This year's experience saw us gadding around in the South of France sans enfants (crazy person reversal!) pretending to be A listers. The experience was so authentic they even laid on paparazzi at Nice airport. I'm sure the photos would have been much better if Eva Longoria hadn't stuck her beak in them but she was so small I'm sure they only photographed her enormous sunglasses whilst taking my picture. Continuing in A lister mode whilst holding my award (ok glass of wine!) I would like to thank my Mother without whom none of this would have been possible. I thank her to heaven and back for being game enough (again) to take my offspring for the entire time.
Our itinerary involved activities which were Aspie Man heaven, riding Harley Davidsons, driving Ferrari's, being passengers in vintage cars, sailing catamarans etc. But I won't complain, for the women the bonus was that this was all taking place on the Cote D'Azur where we could indulge in our fantasy of pretending to be Grace Kelly. That was of course not the real bonus of the trip, Sebastien the French chef was the real bonus. Only kidding. When these trips occur, for five whole days I get to be sane. I don't have to deal with ASC meltdowns or demands and I can give my eyes a rest by not being on constant alert for hyperactive children. I am allowed to turn my brain off, so to speak. I also have the privilege of watching my husband relax and revert to the man I met many years ago who laughed and played the joker all the time. Watching him flirt with the tour guide, as ironic as it may sound, was a highlight of this recent trip. His stress is partly work related of course but there is no denying he finds walking into a mad house night after night a little testing and the strains of having a son with ASC and ADHD undoubtedly affects him too.
These trips naturally come to an end and I transform from Grace Kelly having her dinner served to her in Monte Carlo into Marge Simpson making the dinner in a very particular way for Bart. The pain of the flight home becomes a reality and relatively pain-free travel through France and to various parts of England by car courtesy of Ritalin is consigned to a distant memory. Next time I will be flying with my parachute, not that I plan to travel around Europe with my children again any time soon - the memories of the flight are still too raw...
So back to Ben travelling around Great Britain in an Astra, the very least we can do is buy enough of his books (which are available on Amazon both sides of the Globe) to allow him to buy a Renault Espace for his next escapade. Which given he owes me a favour he could combine with a trip down under and a follow up book called Are We Nearly There Yet Cobber? Driving Around Australia With Two Children Under The Age Of Ten And A Kangaroo In A Renault Espace. Just a thought Ben...!
Wednesday, 2 May 2012
I've Got The MoooOOOooooves Like Newton!
I've been feeling a little bit like Bert Newton lately. No, not a 70 year old, dodgy toupe wearing comedian with jokes that Bruce Forsyth would be embarrassed to tell. No, I'm referring to Bert Newton the parent. Bert must be waking up every day at the moment and dreading turning on the TV to see what escapades his son has been arrested for that day the same as I dread turning up to school to pick up Harry not knowing whether he has got through the day incident free.
Whilst Bert has an adult son and his incidents involve being arrested several times a day for being a bit loose with his fists, Harry is of course only just nine and no Police have been involved - yet! He is merely dabbling with getting as many school detentions as is physically possible in the space of a few hours but nevertheless, Bert's son Matthew is clearly a very sick man whose illness affects his behaviour as Harry is a child with several conditions which affect his behaviour, for which they are punished and which as a parent renders you pretty useless.
Whilst Harry's first diagnosis was for Asperger's, he also has co-morbid ADHD, as do many ASC children. Sadly, many people believe ADHD to be a made up condition, an excuse for bad parenting, poor diet and a lack of discipline. As with all of our children's disabilities, they are hidden. Therefore, any empathy or attempt at understanding is limited and quite frankly the media don't help. Well let me tell any sceptics, it is a very real and very debilitating disability. Harry's attention span so far this year has totalled ten minutes. All day.
This latest foray in the world of school detentions has been a new one for him. He has up until this year been the epitome of a child who holds it in all day and then lets it all out in the safety of his own home where Mum will still love him even when he's screaming that he hates her and wants a new Mum! A child with ASC and/or ADHD going through a continual cycle of detentions then suspension is, however, not new. Unfortunately, it appears to be the norm. These children face every day with so many more opportunities to fail or perform unacceptably. They receive countless detentions, are labelled the naughty kid and self-esteem plummets to the point where they give up. I have read countless autobiographies and heard first hand accounts of children on this interminable path. My most recent encounter was reading Kathy Lette's new novel The Boy Who Fell To Earth, which is a work of fiction based on Kathy's first hand experience of having a son on the Spectrum and who clearly went through years of school hell. I honestly never thought I would be telling the same tale.
It would be fair to say it has been a very stressful time over the past few months but conscious of taking care of myself during this period I have looked after my diet and ensured my fruit intake has been maintained. Lots of lovely grapes, which I have preferred in their squeezed and fermented state, but they have been grapes nonetheless. And iron and carbohydrates for energy have been very generously provided in a lovely little slab of dark stuff. But there is only so much healthy eating a girl can do, so it was time to tackle the ADHD monster head on and the sword of choice has been Ritalin - try not to shiver as you read that. This tiny little pill has turned things around immediately for my child. His teacher has proclaimed that someone has come along and pressed the re-set button on him and it's all systems go.
Parents really do have the nastiest battle on their hands when it comes to the 'to medicate or not, that is the question' debate. I naturally did copious amounts of research. I avoided all the scare-mongering websites that you find these days and stuck to science. The medications provided for ADHD sufferers, and they do suffer, are not 'speed', some merely come from the same plant family. Just as heroin is derived from codeine - think about that next time you pop a pain killer into your mouth! They are not intended to be ingested the same way as Class A drugs and their effect is therefore not the same. But regardless of any of these facts, my decision was this; which is crueler? Sitting back and watching Harry continue on this downward spiral of detentions, whilst not learning a thing, to the point where he will give up and go on drugs of his own accord at 13 for something to do other than go to school. Or, giving him a medication which can help him pay attention and learn whilst monitoring him constantly for side effects so that by the time he reaches his teenage years he wants to keep learning, he sees a point to school and perhaps doesn't by this point need any medical assistance. It really was a no-brainer.
The upside of this latest episode is, along with getting him medical help, I called into question the discipline procedure at school which, I felt, should be as inclusive as the education policy. I do not want another ten years of what I have gone through in just two months. And quite frankly, our children deserve better and it's time for a change. Thankfully, the Principal is on the same wavelength and changes are hopefully going to be introduced so that children who don't get social rules or who are impulsive, don't get detentions per se. A recent article a friend was kind enough to make me aware of regarding school discipline procedures is attached for you to read yourself. Makes fascinating reading and I hope the trend catches on, for all our children's sake.
Interestingly, my Dad found a few articles on the positive effects caffeine can have on children with ADHD, where the caffeine sends most of us a bit hyper and nuts, it has the reverse effects on them and mirrors the effect of medication. So now I am no longer the Mum Harry no longer wants and am the coolest Mother ever because I let him drink Red Bull for breakfast!! Mark Webber will be so proud...
http://acestoohigh.com/2012/04/23/lincoln-high-school-in-walla-walla-wa-tries-new-approach-to-school-discipline-expulsions-drop-85/
Thursday, 29 March 2012
Road to Somewhere!
'Well we know where we're going, but we don't know where we've been', the immortal words of Talking Head's 'Road to Nowhere'. For a long time, we had no idea where we were going, but three years ago, February 7th 2009, was the day we found out where we were heading. Three years on, it is all too easy to think about all the things we are still struggling with, forgetting where we have been. But a few things lately have reminded me just where we were a few years ago and just how much Harry has come on in leaps and bounds.
I will never forget February 7th 2009 for several reasons, all of them momentous. The date will be remembered in my household as the day my younger son, Elliot, decided to rid himself of nappies forever. A month off of being three, I believe he knew we needed one less stress in our lives by the end of that day. The date is most synonymous for the rest of the World as being Black Saturday. The day when the state of Victoria, where we were currently living, suffered some of it's worst bush fires which killed 172 people and left hundreds homeless. The heat that day can only be equated to how I imagine standing in a fan forced oven would feel. 46.5 degree heat with strong south-easterly winds. It was a day on which any sensible person would have laid under the air-conditioner with a bikini on, cocktail in hand. We, however, took a trip to Melbourne in a car which kept breaking down on the motorway because it couldn't cope with the heat. Given the temperatures and the smoke in the distance, not to mention the stress of a French car which was clearly less Cannes and more Can't, we would not have ventured outside the front door were it not for the fact that we were on our way to receive the results of Harry's second Autism assessment. And again the date, for me at least, will forever be etched in my memory.
Despite overtones from the assessing psychologist, Sally Rigley, that there were obvious flaws with Harry's first assessment, I had prepared myself to be told the 'worst', that Harry did not have Asperger's. My heart was literally in my mouth as we waited to hear Sally's words after her opener of 'In my opinion...'. Unless you have been in this position, you will have trouble comprehending that I wanted the diagnosis. Having initially been told that Harry 'simply had behavioural issues', Sally's next few words '...Harry does have Asperger's' gave me long sought after answers and I finally knew where we were going. The euphoria of knowing my son wasn't just a naughty boy, of course gave way to grief a few days later. Then it was sink or swim time, so I pulled on my rubber ring, arm bands and flippers. Nobody and nothing, not even Jaws, was going to stop me now.
I, of course, only had a basic road map to my future, the intricacies of which could not have been anticipated and they still can't. I am very fortunate to have recently had a small glimpse into where I am heading courtesy of somebody who has already been there and is still travelling the road. Attending a recent Asperger's conference in Brisbane, I was looking forward to the opening address by Tony Attwood, naturally! The theme for the conference was positively living with Asperger's, and you know I'm a big advocate of seeing the positives of our lives. But the main draw was the second presentation by Katherine Sykes. To the Australian public, Katherine is perhaps unknown. However, if I was to mention that her son is Declan Sykes, fans of the X Factor will know exactly who I am talking about.
It was revealed towards the beginning of the X Factor series that Declan is an Aspie, something which really didn't come as much of a surprise to those of us with Aspie radars and who watched the X Factor auditions. What did surprise us was that Declan not only auditioned for X Factor, but did it so well. Thinking of my own son's anxiety, the thought that one day he could be brave enough to take to a stage in front of hundreds of people, never mind Scary Spice, is inspiring to say the least. Declan of course made it into the top 12 and has a stunning voice which saw him get through to the top 5 of the show. The first live show I watched with dropped jaw and my thoughts could not help but gravitate towards Declan's mother. I could only imagine how proud she must have been feeling at that precise moment, presuming she had come from the same place I was currently in.
Katherine presented her speech with humour, modesty and was heartbreakingly candid. I will be honest I could not contain the floodgates, whilst Tony Attwood was sitting two seats away from me I might add - oh the shame! Katherine calls it 'leaking', I was more of a burst pipe and I thank the person behind me who was clearly a plumber! She had no idea why anyone would be interested in hearing her speak, she was after all, merely the mother of Declan. What Katherine I suspect is too modest to accept, is that us Mums would have been interested in 'Katherine, the mother of a child with ASC' regardless of her son's TV fame. Mothers everywhere want and need to hear the stories of other mothers. It cements the seedling of a feeling that we are not alone, and every time a mother says something that you can relate to, it restores your self-belief a little, the 'it's not just me' sense of relief.
OK, it's fair to say, without her son's appearances on the Australian version of the most famous reality music show in the World, we would not have heard of Katherine Sykes prior to the conference. Naturally, the fact that Declan made it to the live shows on the X Factor gave hope to all us mothers out there with ASC children, that there is life beyond, and we all wanted to know how that felt. But even without these factors, Katherine is a remarkable woman and her story is fascinating. The thought that her son was diagnosed long before autism funding was offered, support groups, if there were any, were few and far between, and books and information on how to help her son were scarce. She raised her son using her own wits and initiative, not necessarily knowing the 'right' way to do it, but she knew her son and, us Mums all know how important that is. The cherry on top of the cake was of course that she did it alone, she had to make her own money, whilst being on call 24/7 for her son.
Katherine and I related on many levels, not least of which was the fact we both have sons who tell us they hate us with disturbing frequency but which we were crying with laughter about. Again, unless you've been there, this is something which may confuse some of you but trust me it's the only way to cope. More joyously was the way we could compare where our children were a few years ago, and where they are now. Declan three years ago was refusing to be touched or hugged, roll on a few years and he's hugging Beyonce on TV, famously more than once! Katherine told me she watched with pride as Declan throughout the contest made his way from the edge of the stage during the elimination, avoiding the group hug, to eventually being centre stage, in front of the camera, allowing others to hug him and hugging others. Katherine leaked on more than one occasion. And here we jump from the X Factor to Finding Nemo!
Recently we were all watching Finding Nemo and it struck me half way through that three years ago, Harry point blank refused to watch it because a scene in the film scared him so much. A scene in a children's movie! Now here he was watching it without flinching and I had to take a moment to marvel at what may seem trivial to others, but to me it was priceless. A few days later, his father was screaming his lungs out on a thrill ride, whilst Harry nonchalantly said it was fun. Barely a year ago, Harry was refusing to go on even the children's rides at our local theme park, and here he was, outwitting his father who quite frankly needs his head reading based on some of the rides he goes on and finds fun! Being able to tell people that your son has watched Finding Nemo may not be as much of a dinner party topic as saying he got a hug off Beyonce, but the enormity of the act remains the same to Mothers of children with ASC everywhere.
Katherine Sykes may consider herself to be merely the mother of Declan, but to all the ASC mothers out there, she is so much more than that. Her story resonated in every parent in the audience at the conference and her experiences cut very close to the bone, save for the teenage years which I am yet to experience, but for which I am now a little more prepared. However, now that I have a rough idea of where I am heading, I am not quite sure whether to hide or move the entire family to Antarctica!
I will never forget February 7th 2009 for several reasons, all of them momentous. The date will be remembered in my household as the day my younger son, Elliot, decided to rid himself of nappies forever. A month off of being three, I believe he knew we needed one less stress in our lives by the end of that day. The date is most synonymous for the rest of the World as being Black Saturday. The day when the state of Victoria, where we were currently living, suffered some of it's worst bush fires which killed 172 people and left hundreds homeless. The heat that day can only be equated to how I imagine standing in a fan forced oven would feel. 46.5 degree heat with strong south-easterly winds. It was a day on which any sensible person would have laid under the air-conditioner with a bikini on, cocktail in hand. We, however, took a trip to Melbourne in a car which kept breaking down on the motorway because it couldn't cope with the heat. Given the temperatures and the smoke in the distance, not to mention the stress of a French car which was clearly less Cannes and more Can't, we would not have ventured outside the front door were it not for the fact that we were on our way to receive the results of Harry's second Autism assessment. And again the date, for me at least, will forever be etched in my memory.
Despite overtones from the assessing psychologist, Sally Rigley, that there were obvious flaws with Harry's first assessment, I had prepared myself to be told the 'worst', that Harry did not have Asperger's. My heart was literally in my mouth as we waited to hear Sally's words after her opener of 'In my opinion...'. Unless you have been in this position, you will have trouble comprehending that I wanted the diagnosis. Having initially been told that Harry 'simply had behavioural issues', Sally's next few words '...Harry does have Asperger's' gave me long sought after answers and I finally knew where we were going. The euphoria of knowing my son wasn't just a naughty boy, of course gave way to grief a few days later. Then it was sink or swim time, so I pulled on my rubber ring, arm bands and flippers. Nobody and nothing, not even Jaws, was going to stop me now.
I, of course, only had a basic road map to my future, the intricacies of which could not have been anticipated and they still can't. I am very fortunate to have recently had a small glimpse into where I am heading courtesy of somebody who has already been there and is still travelling the road. Attending a recent Asperger's conference in Brisbane, I was looking forward to the opening address by Tony Attwood, naturally! The theme for the conference was positively living with Asperger's, and you know I'm a big advocate of seeing the positives of our lives. But the main draw was the second presentation by Katherine Sykes. To the Australian public, Katherine is perhaps unknown. However, if I was to mention that her son is Declan Sykes, fans of the X Factor will know exactly who I am talking about.
It was revealed towards the beginning of the X Factor series that Declan is an Aspie, something which really didn't come as much of a surprise to those of us with Aspie radars and who watched the X Factor auditions. What did surprise us was that Declan not only auditioned for X Factor, but did it so well. Thinking of my own son's anxiety, the thought that one day he could be brave enough to take to a stage in front of hundreds of people, never mind Scary Spice, is inspiring to say the least. Declan of course made it into the top 12 and has a stunning voice which saw him get through to the top 5 of the show. The first live show I watched with dropped jaw and my thoughts could not help but gravitate towards Declan's mother. I could only imagine how proud she must have been feeling at that precise moment, presuming she had come from the same place I was currently in.
Katherine presented her speech with humour, modesty and was heartbreakingly candid. I will be honest I could not contain the floodgates, whilst Tony Attwood was sitting two seats away from me I might add - oh the shame! Katherine calls it 'leaking', I was more of a burst pipe and I thank the person behind me who was clearly a plumber! She had no idea why anyone would be interested in hearing her speak, she was after all, merely the mother of Declan. What Katherine I suspect is too modest to accept, is that us Mums would have been interested in 'Katherine, the mother of a child with ASC' regardless of her son's TV fame. Mothers everywhere want and need to hear the stories of other mothers. It cements the seedling of a feeling that we are not alone, and every time a mother says something that you can relate to, it restores your self-belief a little, the 'it's not just me' sense of relief.
OK, it's fair to say, without her son's appearances on the Australian version of the most famous reality music show in the World, we would not have heard of Katherine Sykes prior to the conference. Naturally, the fact that Declan made it to the live shows on the X Factor gave hope to all us mothers out there with ASC children, that there is life beyond, and we all wanted to know how that felt. But even without these factors, Katherine is a remarkable woman and her story is fascinating. The thought that her son was diagnosed long before autism funding was offered, support groups, if there were any, were few and far between, and books and information on how to help her son were scarce. She raised her son using her own wits and initiative, not necessarily knowing the 'right' way to do it, but she knew her son and, us Mums all know how important that is. The cherry on top of the cake was of course that she did it alone, she had to make her own money, whilst being on call 24/7 for her son.
Katherine and I related on many levels, not least of which was the fact we both have sons who tell us they hate us with disturbing frequency but which we were crying with laughter about. Again, unless you've been there, this is something which may confuse some of you but trust me it's the only way to cope. More joyously was the way we could compare where our children were a few years ago, and where they are now. Declan three years ago was refusing to be touched or hugged, roll on a few years and he's hugging Beyonce on TV, famously more than once! Katherine told me she watched with pride as Declan throughout the contest made his way from the edge of the stage during the elimination, avoiding the group hug, to eventually being centre stage, in front of the camera, allowing others to hug him and hugging others. Katherine leaked on more than one occasion. And here we jump from the X Factor to Finding Nemo!
Recently we were all watching Finding Nemo and it struck me half way through that three years ago, Harry point blank refused to watch it because a scene in the film scared him so much. A scene in a children's movie! Now here he was watching it without flinching and I had to take a moment to marvel at what may seem trivial to others, but to me it was priceless. A few days later, his father was screaming his lungs out on a thrill ride, whilst Harry nonchalantly said it was fun. Barely a year ago, Harry was refusing to go on even the children's rides at our local theme park, and here he was, outwitting his father who quite frankly needs his head reading based on some of the rides he goes on and finds fun! Being able to tell people that your son has watched Finding Nemo may not be as much of a dinner party topic as saying he got a hug off Beyonce, but the enormity of the act remains the same to Mothers of children with ASC everywhere.
Katherine Sykes may consider herself to be merely the mother of Declan, but to all the ASC mothers out there, she is so much more than that. Her story resonated in every parent in the audience at the conference and her experiences cut very close to the bone, save for the teenage years which I am yet to experience, but for which I am now a little more prepared. However, now that I have a rough idea of where I am heading, I am not quite sure whether to hide or move the entire family to Antarctica!
Monday, 30 January 2012
To Resolve Or Not To Resolve, That Is The Question...?
A New Year, and for a lot of people, a chance to make a heap of resolutions that they probably will have broken by February! I do not view making New Year resolutions a complete waste of time, I have made the odd New Year's resolution myself and have stuck with it. Twenty-two years ago I gave up eating meat and have been a veggie-terrible to this day. But neither do I reserve the New Year for setting new goals and making fresh starts. As a mother of an ASC child, I find myself making resolutions all year round. 'I will stay calmer, even when my children are driving me up the wall, over the roof and back down again; I will find one-hundred and one new ways to make my children eat their chicken and veggies; I will stress less about the house work and spend more time with my children' etc.
One ever-popular New Year resolution to lose weight, exercise more and drink less I did in fact make back in October. Yes, I know what you're thinking, but the gin was sacked and the tonic water promoted to position of my new BFF. #amazeballs as they say! As a consequence, my baby weight of six years is melting away. As for the exercise, well, I don't want to go too crazy now do I? Staying calmer is a daily challenge and consequently a daily resolution. Some days I succeed, other days I ring my husband up wailing like a banshee to 'come home NOW!' I know I am not alone. The reason I know this is due to last year's resolution.
Last year's resolution was imposed by my mother. I was to go out into the big wide World and make friends after a self-imposed exile of nearly two years. Anyone who knows me, knows I am sociable and quite like a chat! However, after a few bumpy episodes of people turning their back on me because of Harry and his ASC behaviours, I figured the safest course of action was just to not bother any more. I won't lie, when these episodes happened, it hurt - a lot. So when the family moved to Queensland just over two years ago, it was easy just to plod along with my own life bothering nobody, keeping the protective wrapping on.
For the sake of my youngest, Elliot, I did join a playgroup, which mercifully was an Autism playgroup. Despite Elliot not having an ASC, I knew he would be able to play and make friends with other non-ASC siblings attending. And I knew I would feel safe in the other parents' company. Even when Elliot started school, I would still pop into playgroup to say hello, sometimes it would be my only conversations with adults, other than my husband, all week. Eventually, being a good girl and doing as my Mummy told me, I took the Taurean bull in me by the horns and organised a coffee morning with the playgroup Mums and have not looked back since. We are now all wailing banshees together, when the need arises, and occasionally drunken lushes!
Due to my inner-banshee, one resolution I have made especially for this New Year is to find more stress-less ways of doing things. I mean, let's face it, parents in general have enough stress as it is but ASC parents have stress levels off the Richter scale. The saying 'count to ten and breathe deeply' used to be 'count to ten and if you can't find a glass in time, just neck the gin from the bottle' in my house. But given my gin hiatus, I need new tactics! So if that means chicken and veggies disguised as a tin of spaghetti every night because it saves tea-time dramas, so be it. With all the money I'm saving on my gin bill, I'm seriously considering hiring a cleaner every now and then, which in turn takes care of the house work stress/guilt.
Now that I am back out in the World, a more serious resolution is to show more understanding and tolerance and to be less judgemental of people who struggle to understand ASC or who demonstrate a lack of comprehension for the life I lead. There is nothing more soul destroying than a person responding to my explanation of some symptoms of ASC or ADHD with a 'but couldn't it just be...' or 'do you not think it's...'. Belief that hidden disabilities are more controllable than we lead people to believe is just as infuriating as a person who listens to the description of what daily life is like when you have a child with ASC, but does not hear.
Painful past experiences tend to make everyone 'once bitten, twice shy'. In my case, it's been more a case of once bitten, twice mauled and three times chewed up and spat out. Most encounters have been of a personal nature and I have persisted in the past trying to evoke some understanding in an attempt to maintain friendships and have, as a result, left myself open to further attack and rejection. It really has been no wonder that I have worn a full suit of armour, wielding my sword at the first sign of battle for many years now and is something many, if not all, ASC parents I'm sure can relate to. As such, you know my resolution is not necessarily going to be easy. I will confess, in many cases the temptation to throttle is high.
A friend of mine lead me to this quote by Ellen Notbohm. 'If you don't like something, change it. If you can't change it, change the way you think about it.' This year, I will continue to provide information about ASC and enlighten those who want to be enlightened. For those who don't, I will try not to think less of them as people because of their inability or unwillingness to understand. And in the event a person cannot take me and Harry into their life or can no longer keep us there, I will no longer take it personally and want to poke sticks in their eyes! I will walk away singing 'Que Sera Sera'. Obviously, this attitude is not merely due to a New Year but also down to the fact that becoming a serial murderer is not currently on my resolution list! Therefore, I will have to keep all throttling in check and am going to have to find it deep within me to keep my tolerance levels high and continue to keep my alcohol to blood levels low. Wish me luck!
One ever-popular New Year resolution to lose weight, exercise more and drink less I did in fact make back in October. Yes, I know what you're thinking, but the gin was sacked and the tonic water promoted to position of my new BFF. #amazeballs as they say! As a consequence, my baby weight of six years is melting away. As for the exercise, well, I don't want to go too crazy now do I? Staying calmer is a daily challenge and consequently a daily resolution. Some days I succeed, other days I ring my husband up wailing like a banshee to 'come home NOW!' I know I am not alone. The reason I know this is due to last year's resolution.
Last year's resolution was imposed by my mother. I was to go out into the big wide World and make friends after a self-imposed exile of nearly two years. Anyone who knows me, knows I am sociable and quite like a chat! However, after a few bumpy episodes of people turning their back on me because of Harry and his ASC behaviours, I figured the safest course of action was just to not bother any more. I won't lie, when these episodes happened, it hurt - a lot. So when the family moved to Queensland just over two years ago, it was easy just to plod along with my own life bothering nobody, keeping the protective wrapping on.
For the sake of my youngest, Elliot, I did join a playgroup, which mercifully was an Autism playgroup. Despite Elliot not having an ASC, I knew he would be able to play and make friends with other non-ASC siblings attending. And I knew I would feel safe in the other parents' company. Even when Elliot started school, I would still pop into playgroup to say hello, sometimes it would be my only conversations with adults, other than my husband, all week. Eventually, being a good girl and doing as my Mummy told me, I took the Taurean bull in me by the horns and organised a coffee morning with the playgroup Mums and have not looked back since. We are now all wailing banshees together, when the need arises, and occasionally drunken lushes!
Due to my inner-banshee, one resolution I have made especially for this New Year is to find more stress-less ways of doing things. I mean, let's face it, parents in general have enough stress as it is but ASC parents have stress levels off the Richter scale. The saying 'count to ten and breathe deeply' used to be 'count to ten and if you can't find a glass in time, just neck the gin from the bottle' in my house. But given my gin hiatus, I need new tactics! So if that means chicken and veggies disguised as a tin of spaghetti every night because it saves tea-time dramas, so be it. With all the money I'm saving on my gin bill, I'm seriously considering hiring a cleaner every now and then, which in turn takes care of the house work stress/guilt.
Now that I am back out in the World, a more serious resolution is to show more understanding and tolerance and to be less judgemental of people who struggle to understand ASC or who demonstrate a lack of comprehension for the life I lead. There is nothing more soul destroying than a person responding to my explanation of some symptoms of ASC or ADHD with a 'but couldn't it just be...' or 'do you not think it's...'. Belief that hidden disabilities are more controllable than we lead people to believe is just as infuriating as a person who listens to the description of what daily life is like when you have a child with ASC, but does not hear.
Painful past experiences tend to make everyone 'once bitten, twice shy'. In my case, it's been more a case of once bitten, twice mauled and three times chewed up and spat out. Most encounters have been of a personal nature and I have persisted in the past trying to evoke some understanding in an attempt to maintain friendships and have, as a result, left myself open to further attack and rejection. It really has been no wonder that I have worn a full suit of armour, wielding my sword at the first sign of battle for many years now and is something many, if not all, ASC parents I'm sure can relate to. As such, you know my resolution is not necessarily going to be easy. I will confess, in many cases the temptation to throttle is high.
A friend of mine lead me to this quote by Ellen Notbohm. 'If you don't like something, change it. If you can't change it, change the way you think about it.' This year, I will continue to provide information about ASC and enlighten those who want to be enlightened. For those who don't, I will try not to think less of them as people because of their inability or unwillingness to understand. And in the event a person cannot take me and Harry into their life or can no longer keep us there, I will no longer take it personally and want to poke sticks in their eyes! I will walk away singing 'Que Sera Sera'. Obviously, this attitude is not merely due to a New Year but also down to the fact that becoming a serial murderer is not currently on my resolution list! Therefore, I will have to keep all throttling in check and am going to have to find it deep within me to keep my tolerance levels high and continue to keep my alcohol to blood levels low. Wish me luck!
Friday, 23 December 2011
'Tis the Season To Go Batty - Fa la la la la...
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!
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!
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!
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