How does one become able to recognise Autism? How does a parent recognise, and realise there's something not right about their 'odd' child? How does a friend recognise it? A stranger? A professional?
As a parent of an Autistic child there was a time I thought I had failed. Failed as a parent because I could not recognise the signs of Autism in my child, while professional after professional would spend as little as 30-45 minutes with my child and see it almost instantly. Was I really so bad at being a parent that I had failed to see something so obvious? The only answer to this is 'no'. I did not fail, and most responsible parents who didn't recognise it didn't fail either. Most new parents suffer from 'new parent anxiety,' and study the baby development charts. When will they roll? When will they crawl? When will they sit? And so it goes. I guess for parents of non-verbal Autistic kids, the signs would have been a bit more obvious than in our experience, but with comments such as "You know, Einstein didn't talk until he was 3!" it's easily possible that even they may have quashed any doubts from their mind.
We quickly realised we were far from the only ones who hadn't noticed that Alex is Autistic. Like a pregnancy, we only wanted to tell family at first, especially since we'd only seen the pediatrician once and it was still a case of *may be Autistic*. Comments of disbelief came one after the other, after the other. We ourselves didn't believe the pediatrician. "Are you insane?" was my first thought as our world seemed to shatter into a million pieces.
Now I believe I truly understand why Autism has adopted the puzzle piece as their 'symbol'. We both had a picture in our heads of what Autism was, but none of that matched our son. As we began to learn what Autism really is, like some gut wrenching horror story we began to see every sign, every symptom come together and make a perfect picture of our son. I clearly remember 'Googling' for an Autism checklist and stumbling across one that psychologists use for diagnosing. It required "A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)" as I browsed the list Alex had a tick in nearly every box.
I think one of my big "Ah Ha!" moments (Thank You Oprah!) happened the first time my husband's parents admitted they struggled while caring for my son for a day. That was the day I realised I wasn't a bad parent for not noting my son's Autism after all. Alex was having a hyper episode it seemed. Our son does not have an additional diagnosis of ADHD, but I can imagine it's fairly similar to one of Alex's hyper episodes, except ongoing. I can't recall what happened in detail; whether we were asked to pick him up early, or whether they said they had thought about asking us to get him early. But with a clear look of exhaustion on their faces they admitted they struggled, and now they "got what we go through" at home on a daily basis. After having four children of their own, they were utterly exhausted after one day of our son on a hyper.
Monday, February 28, 2011
Sunday, February 20, 2011
Advocate or Suffocate
When you have a child with Special Needs you often want to advocate for them. You want to find all the services that fulfil their needs, and make sure their rights as children are not ignored. I often find a lot of parents, like myself want to raise awareness. Awareness decreases ignorance of the particular condition, and with enough public awareness, it can often lead to positive programs and government funding. Since our children can not advocate for themselves, we have to do it for them. But how does one advocate for their child, fulfill all their needs, without over stepping the boundaries and suffocating their child? Making the disability define them. Not providing them a path where they can be themselves.
It's a very fine balance. With services and funding always being in short supply it's often a fact that, as the saying goes "The squeakiest wheels get the most oil" but sometimes even that is not enough. I've had to beg services that we are technically 'out of zone' for to help us because those within zone were full 6 months ago.
I am also commonly frustrated by common misinformation on Autism, how almost everyone has one picture in their head of what Autism is, and if my son doesn't fit that picture, I almost certainly get asked "Really? Are you sure?" Part of me thinks I should almost throw an Autism Awareness party, handing out information leaflets to each guest and making grand speeches. I have to restrain myself an remind myself while information and awareness are both important tools, the disability should never define or overshadow my son, and who he is.
After all, he is Alex, who happens to have Autism, Not Autism who happens to have the name Alex.
It's a very fine balance. With services and funding always being in short supply it's often a fact that, as the saying goes "The squeakiest wheels get the most oil" but sometimes even that is not enough. I've had to beg services that we are technically 'out of zone' for to help us because those within zone were full 6 months ago.
I am also commonly frustrated by common misinformation on Autism, how almost everyone has one picture in their head of what Autism is, and if my son doesn't fit that picture, I almost certainly get asked "Really? Are you sure?" Part of me thinks I should almost throw an Autism Awareness party, handing out information leaflets to each guest and making grand speeches. I have to restrain myself an remind myself while information and awareness are both important tools, the disability should never define or overshadow my son, and who he is.
After all, he is Alex, who happens to have Autism, Not Autism who happens to have the name Alex.
Thursday, February 17, 2011
Into the Melting Pot
It's an interesting new world being a mum to a special needs child. You see a whole new world you never saw before, meet people you would have never met, and hear words and terms you've never heard before. Educating yourself on all your childs needs, and the new fancy words, they could run a whole new TAFE course on it all. Seeing through the mud I think I'd call it.
One of the new terms I've come to understand as a mum to a child with Autism is 'Meltdown'.
Now the word Meltdown is hardly exclusive to the Autism world. Nuclear reactors melt down, you melt down chocolate for a recipe but I never really understood the term 'meltdown' in relation to Autism Spectrum Disorder kids until I knew my son. Now at first, I didn't understand what it was, because he was having meltdowns long before his diagnosis. I knew he wasn't having a tantrum, tantrums are easily recognisable, but this experience was a whole new ball game. I think I've figured out why professionals use the term meltdown to describe this behaviour. When my child has a melt down you can actually see all that is my son, melt away and all that is left is a hollow shell, vaguely resembling my son. He looks like my son, except if you look at his eyes, his eyes are vacant, he is not taking any information in, nothing is rational, all that's left is his fight instinct, to fight his way out of this situation. The meltdown is as frightening for us as parents as it is for him to be experiencing it. There's no bargaining, it's a black or white "I can not handle this situation'. There are repercussions for the meltdown also, there maybe the initial mess from the flailing limbs, fingers crossed no injuries to your child, yourself, or anyone else in the firing line, but some linger beyond the event. Sometimes the emptiness in his eyes can fade in and out for days. Communication bounces off his ears. Even simple instructions need to be repeated, and simplified even further.
So I do find it strange almost funny when I hear mums of Neurotypical children using the word meltdown to describe their childs tantrum. I borrow the term Neurotypical from medical professionals, I'm not intending to bamboozle anybody, it's their way of officially labelling 'normal'. Now why do I laugh? Not that I think it's funny that their child is chucking a hissy fit over mummy saying no to the chocolate bar but the fact they think that it rates on the same scale as an actual meltdown. I'm not trying to be smug or exclusive about words and terms and claim that as parents to ASD kids we have ownership over words and terms. If ASD kids can have tantrums, why can't NT kids have meltdowns? Why? Because the fundamental reasons for the meltdown aren't there in an NT child. They don't suffer from sensory overload, unless they have an Sensory Processing Disorder outside of having an ASD. Sensory overload to such a point that they can not cope, they can not function, they just shut down. Melt down.
One of the new terms I've come to understand as a mum to a child with Autism is 'Meltdown'.
Now the word Meltdown is hardly exclusive to the Autism world. Nuclear reactors melt down, you melt down chocolate for a recipe but I never really understood the term 'meltdown' in relation to Autism Spectrum Disorder kids until I knew my son. Now at first, I didn't understand what it was, because he was having meltdowns long before his diagnosis. I knew he wasn't having a tantrum, tantrums are easily recognisable, but this experience was a whole new ball game. I think I've figured out why professionals use the term meltdown to describe this behaviour. When my child has a melt down you can actually see all that is my son, melt away and all that is left is a hollow shell, vaguely resembling my son. He looks like my son, except if you look at his eyes, his eyes are vacant, he is not taking any information in, nothing is rational, all that's left is his fight instinct, to fight his way out of this situation. The meltdown is as frightening for us as parents as it is for him to be experiencing it. There's no bargaining, it's a black or white "I can not handle this situation'. There are repercussions for the meltdown also, there maybe the initial mess from the flailing limbs, fingers crossed no injuries to your child, yourself, or anyone else in the firing line, but some linger beyond the event. Sometimes the emptiness in his eyes can fade in and out for days. Communication bounces off his ears. Even simple instructions need to be repeated, and simplified even further.
So I do find it strange almost funny when I hear mums of Neurotypical children using the word meltdown to describe their childs tantrum. I borrow the term Neurotypical from medical professionals, I'm not intending to bamboozle anybody, it's their way of officially labelling 'normal'. Now why do I laugh? Not that I think it's funny that their child is chucking a hissy fit over mummy saying no to the chocolate bar but the fact they think that it rates on the same scale as an actual meltdown. I'm not trying to be smug or exclusive about words and terms and claim that as parents to ASD kids we have ownership over words and terms. If ASD kids can have tantrums, why can't NT kids have meltdowns? Why? Because the fundamental reasons for the meltdown aren't there in an NT child. They don't suffer from sensory overload, unless they have an Sensory Processing Disorder outside of having an ASD. Sensory overload to such a point that they can not cope, they can not function, they just shut down. Melt down.
Tuesday, February 15, 2011
The Politics of Disability
It came up recently on a forum I frequent the question of comparison with our Special Needs kids. Did we feel like we were out on a limb where no one could possibly compare or relate to our situation, or did we feel we were more or less in the same boat. I had to say I felt we were more or less in the same boat, even though some of the children could do a lot more than my child can, there were also those that can do a lot less. It still doesn't dampen the feeling of sheer frustration when you just want them to do one thing. A lot of the other children with ASD can do it, some more 'severe' than my son, but I also know logically, I'm not asking him to do one thing, as to be able to do it, he has to do several others first. It's like trying to recite the alphabet starting from L.
One thing that has really come to my attention since knowing I was a mum of a SN child is the R word. As a teenager and even in my 20's I threw it around like it meant nothing. Never giving it a second thought. Now being around SN kids, some with Intellectual Disabilities some without, I can really understand the impact of the word. Especially when it's being thrown around without a second thought or empathy. I always thought those who objected to the R word being thrown around were being a little precious, but now I 'get it'. But maybe now I know the other side of the coin, have I become precious? At this point it has neither been confirmed or denied whether my son has an ID or not, but I have seen enough, that I can understand the profound effect that thoughtless comments have.
So do the unaware need to make a better effort at understanding, or at least displaying some thoughtfulness towards those dealing with Special Needs? Or do the aware need to grow a thicker skin and realise those who don't know, will never understand.
One thing that has really come to my attention since knowing I was a mum of a SN child is the R word. As a teenager and even in my 20's I threw it around like it meant nothing. Never giving it a second thought. Now being around SN kids, some with Intellectual Disabilities some without, I can really understand the impact of the word. Especially when it's being thrown around without a second thought or empathy. I always thought those who objected to the R word being thrown around were being a little precious, but now I 'get it'. But maybe now I know the other side of the coin, have I become precious? At this point it has neither been confirmed or denied whether my son has an ID or not, but I have seen enough, that I can understand the profound effect that thoughtless comments have.
So do the unaware need to make a better effort at understanding, or at least displaying some thoughtfulness towards those dealing with Special Needs? Or do the aware need to grow a thicker skin and realise those who don't know, will never understand.
Monday, February 7, 2011
Sweets for my sweetie
I was cleaning up the kitchen bench yesterday when I stumbled upon a lolly bag. My son attended a child birthday party a little over a week ago and the lolly bag had been sitting on the bench, long forgotten. Alex was happily eating his lunch so I offered him the deal if he finished his lunch he could have a few lollies as a treat. He eventually got there so I gave him half a dozen jelly baby type lollies. Later on that evening, as Alex was struggling through his dinner as usual, his father offered him the same deal. "Finish your dinner and you can have a few lollies" Alex eventually got through the meal and he was given five lollies. Later on that night I was thinking, 'Geez Alex has had a lot of lollies today!' and cast my mind back to a previous birthday party.
It was your fairly standard birthday party, children running around, boys 'shooting' one another of course Alex did not participate in this, he doesn't understand the social norms so he lay on the floor driving a car back and forth in front of his eyes. There was fairly standard party food, cupcakes, lollies, chips and all sorts of things that would make any childs eyes light up. Alex wasn't any different to any other child when it came to treat food he had about half a cupcake and was green ear to ear from the icing. He requested chips, we gave him two or three, he asked for lollies, again we gave him a small amount. The other children whilst running around were downing handfuls of lollies, handfuls of chips a cupcake was downed in a matter of seconds and they eyed off having another. The end of the party was my real eye opener. A 'loot bag' was handed out to each child, Alex recognised it straight away and asked for a lolly. I told him no, he'd had enough sweets and treats that day and he can have some tomorrow he accepted the answer and went back to playing. "Geez he's good!" I hear near me I look around and see one of the mothers nearby is talking to me. I look around and every other child is digging hand over fist into their lolly bag, most were empty before they left the party. Should it be expected for a child to tantrum if they are told they're not having any more junk? Or was it the fact that earlier on that day I had broken the news to this parent of my childs recent diagnosis of Autism, and she expected a tantrum like in the movies? But am I an over paranoid parent who doesn't 'let up' and let him go hog wild crazy at parties? Or in a house of over-hyped, over-tired and over-sugared children, am I the sense of reason?
It was your fairly standard birthday party, children running around, boys 'shooting' one another of course Alex did not participate in this, he doesn't understand the social norms so he lay on the floor driving a car back and forth in front of his eyes. There was fairly standard party food, cupcakes, lollies, chips and all sorts of things that would make any childs eyes light up. Alex wasn't any different to any other child when it came to treat food he had about half a cupcake and was green ear to ear from the icing. He requested chips, we gave him two or three, he asked for lollies, again we gave him a small amount. The other children whilst running around were downing handfuls of lollies, handfuls of chips a cupcake was downed in a matter of seconds and they eyed off having another. The end of the party was my real eye opener. A 'loot bag' was handed out to each child, Alex recognised it straight away and asked for a lolly. I told him no, he'd had enough sweets and treats that day and he can have some tomorrow he accepted the answer and went back to playing. "Geez he's good!" I hear near me I look around and see one of the mothers nearby is talking to me. I look around and every other child is digging hand over fist into their lolly bag, most were empty before they left the party. Should it be expected for a child to tantrum if they are told they're not having any more junk? Or was it the fact that earlier on that day I had broken the news to this parent of my childs recent diagnosis of Autism, and she expected a tantrum like in the movies? But am I an over paranoid parent who doesn't 'let up' and let him go hog wild crazy at parties? Or in a house of over-hyped, over-tired and over-sugared children, am I the sense of reason?
So maybe it's time I blogged
Many people I know blog. I have never really understood why, what the point was etc. Then I thought, I have all these things I'd like to write about mainly what I'm going through in life at the moment and geez wouldn't it be good to get it all out there.
Alex starts his special program at Southern Autistic School this Wednesday, so I'm going to find myself with something that's been completely foreign to me for the last nearly 4 years: Free time. I haven't figured out exactly what I'm going to do with this free time yet, it's not quite enough free time to return to the workforce, but that doesn't mean I can't achieve anything. This blog is just one new project I'm experimenting with.
I will be using it to get out what I'm thinking, I'm hoping for it to be meaningful, not mindless, but tackle both large and small issues.You may find that I might soapbox a little, especially about Autism, but there are so many misconceptions, generalisations and ignorance out there that I honestly feel that people need to be taught what Autism is,and that no two Autistic children are ever the same.
Enjoy my blog, or not....
Alex starts his special program at Southern Autistic School this Wednesday, so I'm going to find myself with something that's been completely foreign to me for the last nearly 4 years: Free time. I haven't figured out exactly what I'm going to do with this free time yet, it's not quite enough free time to return to the workforce, but that doesn't mean I can't achieve anything. This blog is just one new project I'm experimenting with.
I will be using it to get out what I'm thinking, I'm hoping for it to be meaningful, not mindless, but tackle both large and small issues.You may find that I might soapbox a little, especially about Autism, but there are so many misconceptions, generalisations and ignorance out there that I honestly feel that people need to be taught what Autism is,and that no two Autistic children are ever the same.
Enjoy my blog, or not....
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