Over the years I have had to answer a lot of questions about Geordie and his ‘condition’ (other people’s word, not mine). Most of these questions come from well-meaning souls; they are just trying to understand Geordie. I always do my best to answer the questions, to put people at ease and to help them understand — for Geordie’s sake.
Often, though, the questions are really hard to answer because they are, in essence, asking me to define Geordie, to pigeon-hole him and to label him. It is incredibly difficult, in a world that relies on labels and definitions, to make people understand that Geordie has just as many complex behaviours, feelings, likes, dislikes and emotions as any other ‘neurotypical’ child.
Yes, I apply a label when I tell people Geordie has Asperger’s Syndrome, but that is as far as my labelling goes because:
Geordie is Geordie.
Geordie is not Asperger’s.
My son has Asperger’s, but he is as unique as the next person. As he has grown, his personality traits, quirks, likes, dislikes and fears have all changed along with his physical attributes; just like everyone else.
Today, Sue Larkey shared the following script from the Facebook page of Asperger’s Syndrome Awareness. I wish I’d had this script years ago!
Ask me to tell you about my son — not a problem. But don’t ask me to classify him. And don’t expect that what I tell you today is going to apply to him for the rest of his life.
Along with sound, touch (or texture) is an area where Geordie has, in the past, suffered from sensory overload.
I need to preface this by saying that I know there are many people with Autism who are unable to cope with skin-to-skin touch, i.e. hugging, holding hands, kissing etc. We are so, so lucky that this does not apply to Geordie. In fact, skin-to-skin contact is one of the few things that can pull him out of a meltdown. I thank the powers that be every day for the fact I can hug, cuddle and kiss my boy.
Clothing has been the ‘goliath’ for Geordie.
We’ve all suffered, at some time, from the scratchy jumper or the too tight neckline or the tickly tag. It’s irritating and uncomfortable, but manageable. Not so for Geordie. According to Tony Attwood, these clothing mishaps can be downright painful, to the point where the individual is unable to function.
Again, as with our experience with loud noises, I wish I had known this when Geordie was a toddler. It may have explained several things:
♦ the need to cut out every bit of the clothing tag from every item of clothing as failure to do so would cause great distress
♦ the refusal to wear socks for a whole year; shoes without socks were fine, but socks in shoes meant standing up and walking was just not going to happen
♦ the difficulty of transferring from summer clothes to winter ones; several months of bare legs meant moving back into long pants was a nightmare.
These days clothing remains an issue, albeit a more manageable one. We still have to cut the tags off clothing and struggle a little to make the move back into long pants. There are also many items of unworn clothing in the cupboard; most of them are there because “I don’t like how they feel”. Personally, I can’t tell the difference — they all feel the same to me — but Geordie obviously can.
I imagine shopping for someone with sensory issues would be somewhat similar to grocery shopping for someone with food intolerance — you cannot just pick items willy-nilly and assume they will be fine. I have learned to: forget about buying anything in denim; leave clothing with cuffs (jumpers and track suit pants) on the shelves; and test the stretchiness of the neckline before purchasing t-shirts and jumpers. We also don’t do shirts with buttons or collars; and anything with a hood has to be really special to get a look in.
It’s all manageable and is just a case of being aware; although, just for fun, Geordie will occasionally throw in a curve-ball and refuse to wear something he has been fine with for years.
Given what I know now about sensory overload for touch, I am prone to wonder if this had anything to do with Geordie’s sleeping issues as a baby. Was it the texture of his pyjamas, or the sheets, or the blanket? Was it the open space around him, perhaps — little body in a big cot? Was it the lack of skin-to-skin contact? I suspect we will never really know.
What these questions, and our many years of clothing wars, do show, however, is the need to be flexible and not make assumptions. Trying to identify the cause of sensory overload meltdowns, and make adjustments to accommodate them, is much more productive than telling the child to ‘grow up’ or looking to punish him for his behaviour (both of which I have been told to do, or witnessed being done).
Geordie’s clothing preferences are just another part of his beautiful and quirky personality.
I wish I had known about Tony Attwood at the time of Geordie’s diagnosis. The man is brilliant and explains the ins and outs of Asperger’s in a way nobody else seems to be able to do.
Recently, I completed an online course with Tony. Ten years down the track with numerous ‘courses’ under my belt, and I still gained a host of practical information and experienced a myriad of ‘a-ha’ moments.
The section on sensory overload was of particular interest because this is something Geordie has experienced over the years in varying degrees of severity.
Being subjected to a certain powerful or unexpected sound, smell, taste, sight or texture can be irritating, distressing or frustrating for the so-called ‘normal’ person — but for someone on the spectrum the same experience can be downright painful.
One point Tony made in the webinar was that a tendency to sensory overload in any given area is permanent. At the time, I found myself disagreeing. Over the years, Geordie has experienced numerous bouts of sensory overload, most notably with sound. I thought he had grown out of it, until something happened last night that made me want to apologise to Tony for doubting him.
First though, I’ll provide a bit of background.
Our initial (known) experience with sensory overload was in the public toilets. Out of necessity rather than preference, we would have to take Geordie into these places to change nappies and, later, to go to the toilet. Every single time we walked in, he would start screaming. Loud, ear-piercing, uncontrollable screaming that would not stop until many, many minutes after we had exited the area. It took several months to cotton on to what was causing this — the hand dryers. Those things are loud at the best of times, but for Geordie the sound must have been excruciating because the minute he saw one, even if it was off, he would go into meltdown. It got to the point where we would have to slink in so he couldn’t see the dryer, rush him out if someone used it, and even ask people to refrain from pressing the button until we had left.
Then, one day, the meltdowns stopped.
For a time, as a toddler, Geordie was also sound sensitive to helicopters. At first it was just the helicopters, then it was hot-air balloons, planes and helicopters, then the meltdowns began if a bird flew overhead. We became hyper-vigilant whenever we were outside. If we saw any sort of speck on the horizon we would either quickly coax Geordie inside until it had passed, or play ‘let’s cover our ears’.
Then, one day, the meltdowns stopped and it was safe to go outside again.
Certain activities at school have also presented an issue over the years: whole school assemblies; excursions that included a bus trip (which is most of them); concerts and band performances; and carnivals. I suspect extra noisy classes may also have caused issues as Geordie went through a stage where he would leave the room on a regular basis. These activities did not cause a traditional meltdown as such, but a flat refusal to enter the space from where the noise was coming.
Then, one day, this all ceased to be a major, daily issue.
We have been lucky to have been mostly supported in finding ways to deal with Geordie’s sensory overload with sound. Many of his teachers have found ways around it, helping him develop noise tolerance strategies; family have been supportive; and even many strangers have been understanding once we explained what was going on. (On that note, though, there seriously needs to be more education about the difference between a tantrum and a meltdown.)
For the last couple of years, excessive sound has elicited no more of a reaction from Geordie than it has from anyone else. So, perhaps you can see why I thought he’d grown out of it, but last night put paid to that gloating feeling I’d been experiencing.
‘Owww,’ Geordie said to me as he walked into the loungeroom.
‘What?’ I replied, ‘Did you hurt yourself?’
Geordie covered his ears, ‘That noise hurts my ears.’
What noise? I couldn’t hear anything at all.
‘The buzzing,’ he said, ‘from the lights.’
I turned the TV off and listened intently. There was indeed a faint hum coming from the lights. I could barely hear it, but it was hurting Geordie’s ears and we had to turn the dimmer switch on the lights down until the noise stopped hurting.
The sensory overload is still there; he’s just learned how to deal with it.
Being a parent of a child on the Autism Spectrum is a massive, never-ending learning curve.
There are (less-than-)average days, good days and brilliant days — and then there are downright, awful, wish-it-wasn’t-you days. For me, the latter exist, but are increasingly few and far between.
On the not so good days, however, I think it pays to remember that whatever you are feeling and going through, it is worse for your child.
As parents we can forget this — and that’s alright … sometimes. It is ok to feel selfish and self-centred and miserable … as long as we pull ourselves out of it. We are all only human, after all.
One of the hardest things, as a parent (of any child, let alone a child with Autism/Asperger’s) is the building of the thick skin. There are many people out there who are quick to judge and/or offer their ‘advice’ (which can often be thinly disguised criticism). We need to learn to listen to all of this, but to not take it personally — or sometimes to totally disregard it.
Another thing we need to learn to do is to trust our own instincts. I know my child! I (often) know the difference between when the Asperger’s is speaking and when he is just playing me (and when he is just being a brat, because he can). Self doubt does not help anyone.
The other, and probably most important, thing we need to develop as parents is the ability to distinguish the ‘advice givers’ who know what they are talking about from those who ‘have no bloody idea at all’ but like to sound like they do.
With Autism, this can be difficult because nobody with Autism/Asperger’s is the same. What works for me may not work for you. (This is something I hope I manage to impart on this blog — I write about my own experiences, I am not saying they will be the same as yours.) This is where learning to trust our own instincts comes in … for me, I like to listen to and read about the experiences of other people, but I have to be the one to decide whether what they are saying applies in my own circumstances.
The other day, a blogger I follow wrote a post addressed to parents of recently diagnosed children. It was a brilliant post and one I wish I’d been privy to when Geordie was younger. I choose to follow this blogger because she writes honestly and from the heart. She also happens to have Autism and her posts give me insight and perspective.
In this particular post, we are given seven down-to-earth and succinct pieces of advice — from why we shouldn’t ‘grieve’ when we find out our child has Autism, through to never ‘assuming’ anything about behaviours and loving our children for who they are and what they can achieve at any particular point in time. If you are interested, you can read her post here. Remember though, none of us who blog on this subject claim to be experts — we are just sharing our experiences, more often than not we write because it helps us gain clarity in our own lives.
I’ve said it before, and I’ll keep on saying it: being a parent to a child with Autism/Asperger’s is a tough gig. You have to be strong and resilient. You have to be flexible and be able to maintain a sense of self. But, when you are allowed into your child’s world — every tough moment melts away into nothingness.
In a nutshell, it’s an ‘out-of-uniform’ day masquerading as a fundraiser. Students are allowed to ditch their uniforms and wear something else (in this case, their pyjamas), but are ‘fined’ a gold coin which goes towards fundraising efforts for a nominated charity.
Today is all about being able to wear your ‘onesie’ (or pyjamas) to school for the day.
‘Out-of-uniform’ days work a treat — minimal effort on the part of the organisers, and a ‘fun’ way for kids to help raise money.
You may have noticed I emphasised the word fun.
There are many kids (and adults) who love dressing-up; they relish the idea of being able to wear their pyjamas (or some other costume) to school for the day. It’s FUN.
Geordie is not one of those people. He finds the notion of wearing something in an out-of-context situation (i.e. pyjamas when you are not going to bed, or a fancy-dress costume when you are not in a play) to be intimidating. It makes him uncomfortable. It is the opposite of fun.
I feel exactly the same way. I really, really don’t like fancy dress. It makes me uncomfortable and it most definitely is not my idea of fun.
This, however, is where the similarity ends for the two of us.
Growing up, I felt compelled to ‘go with the flow’ and participate in this ‘fancy dress fun’. I would stress for days about it. On the day, my stomach would be in knots and I couldn’t wait to get home to tear off the offending garments. Even now, it is only recently that I have had the courage to put my foot down and say, “No, I don’t do dress ups.” But I still stress about it — What will people think? What will they say? Will I be the only one?
Geordie, on the other hand, has always blatantly refused to participate in such days; whether it be a fundraiser, a themed party or Book Week celebrations — he insists on wearing his normal clothes. He doesn’t care if he is the only one; his only concern is that he feels comfortable. It has taken me a while to realise that, for Geordie, ‘being the only one’, and standing out becasue of that, is NOT an issue for him.
So, right now, he is dressed in his uniform. He has his ‘gold coin donation’ in his bag. In about 20 minutes, he will be heading off to a schoolyard full of children wearing their onesies; he won’t be the only one wearing his uniform, but he will most definitely be in the minority.
I am so, so proud of him.
In Geordie’s world of Asperger’s — where there has been so much confusion, so many obstacles and a constant flow of ‘learning curves’ — being able to stand up and say, “No, I’m not doing that,” is HUGE!
At his young age, he is not only aware of what makes him uncomfortable, but he has the courage to be his own person and to not ‘go with the flow’ when it doesn’t suit him.
If that’s not self-confidence, and if it’s not setting him up for a positive future, then I don’t know what is.
As a parent of a child with autism, you develop a bit of a thick skin. You become used to the ignorance of some people, or their insensitivity, or their dismissiveness. You develop ways of deflecting and counteracting negative attitudes; all for the good of your child’s wellbeing.
Being an advocate is a tough gig, but not one we resent for a moment. The rewards are amazing.
Reflecting on the last eight years, I would have thought I’d experienced the full range of attitudes — from total conviction that ‘autism’ is a thing made up to excuse poor parenting, to people who ‘get it’, right through to people who are so supportive they are suffocating (in that they wish to wrap you and your child up in cotton wool because ‘how else could you possibly cope, you poor thing’).
However, yesterday I realised I hadn’t experienced every attitude — and this one’s a beauty, so strap yourself in.
One of our political ‘leaders’ (and I use that term very loosely) let loose in parliament the suggestion that students with autism were holding mainstream children back and should be put into special classes.
These kids have a right to education, by all means. But if there is a number of them, these children should actually go into a special classroom, looked after and given that special attention. Because most of the time, the teacher spends so much time on them they forget about the child who wants to go ahead in leaps and bounds in their education but is held back by those, because the teachers spend time with them. And I’m not denying them. If it was one of my children I would love all the time given to them, to give them those opportunities. But is it at the loss of our other kids? So our education is very important, and I just feel that it needs to be handled correctly, and we need to get rid of these people because you want everyone to feel good about themselves. Let’s get some common sense back into our classrooms and what we do.
—Pauline Hanson, One Nation Leader (abc.net.au/news)
The worst thing about this statement is that Senator Hanson has tossed all children on the Autism Spectrum into the same basket. That, in itself, shows her complete lack of understanding as to what the ‘spectrum’ actually is. She also mentions the term ‘other disabilities’ at some point, but there is no denying she has zoned in on Autism.
Pauline Hanson is well-known for her tendency to target minority groups with her bigoted, sexist, racist and archaic attitudes, but this latest is a new low, even for her. She is targeting children!
What is not new, however, is she is yet again looking at the victims and attributing blame and punishment to them. She is trying to cover this with emotion, implying ‘we want the best for everyone’, but her solution is to segregate the people she sees as causing the problem. I am amazed she didn’t use the word ‘institution’ at some point.
The thing is this — not only does this statement show Hanson to be a person who does not understand autism (at all), but it also paints her as a simplistic person who lacks the ability to think and problem solve, and genuinely believes there is only one solution to fit all.
Let’s remove the problem would have to be the most simple, yet ineffective, solution ever proposed in any scenario, least of all this one.
Many of the people who know me expected, I’m sure, a huge outpouring of anger and contempt from me yesterday; and this is exactly why I deliberately chose not to write anything in the heat of the moment.
Staying relatively silent (apart from a tiny outburst on Facebook) for the past 24 hours has afforded me the opportunity to wear both of my hats (parent and teacher) and read between the poorly worded lines spewed forth by our senator. In doing so, I have realised this: she has a point, but as per her usual cowardice, she has targeted the wrong group.
The point I would like to believe Senator Hanson was trying to make is that teachers need more support to adequately meet the needs of all of their students. The groups she should have been targeting are the various departments of education (and associated groups) who flatly refuse to supply funding for teacher training in specialised education (including strategies for working with children with Autism) and full-time in-class support for teachers who have special needs children in their classes.
As the situation stands, teachers who have access to full-time support (by way of a ‘learning support assistant’) are as rare as hen’s teeth. Some of us are ‘lucky’ to have this support for one hour a day, often at a time when support is least needed.
So, yes, a teacher’s time is often consumed by supporting the children with special needs. It is also spent dealing with behaviour issues, emotional issues and parent issues from students who do not have any diagnosis … yet I don’t see any call to have these children removed into a special class.
Actually, at any given point of the year, if I was given the luxury to remove all the children from my class who had special needs, behavioural issues, emotional problems — or anything else that took me away from the children who ‘wanted to go ahead in leaps and bounds’ — then I can safely estimate I would only have about five or so children in my class.
And, my question to Pauline is this … where will you find the teachers to teach all of the children I should be able to remove from my classroom, according to your logic?
Sorry? You’re laughing? I’m taking your words ‘out of context’? I’m being unreasonable?
I am being no more unreasonable than the suggestion we can solve the education problem by removing the perceived cause of the problem and locking it up in its own special box (even if we do let it out to play at lunchtime). I’m also being no more unreasonable than the insinuation that all children with Autism be removed, because of course, they are all the same.
Learning without thought is useless; thought without learning is dangerous.
May I suggest to Senator Pauline Hanson (and to everyone who voted for her or agrees with her on this matter) that you first try allocating some of your time to thought before you shoot off at the mouth about something you clearly know very little about.
And, if that doesn’t float your boat, may I propose that we remove all people like you to your own special segregated box, because you are holding us back!
I was having coffee with a friend the other day; she was talking about an experience she recently had with a so-called ‘professional’.
The professional in question this day was her son’s paediatrician.
Her son was recently diagnosed with Sensory Processing Disorder.
The paediatrician she was talking about also happens to be one I have encountered before.
You may see where I am going with this.
Autism is a ‘diagnosable thing’. So is Sensory Processing Disorder. So why is it that so many ‘professionals’ have an issue with this?
In both of our cases it was made crystal clear our sons’ paediatrician did not ‘believe in’ the respective diagnoses. We were both made to feel like ‘bad mums’.
In my case, I was a ‘bad mum’ because Geordie was losing a vast amount of weight, owing to a food obsession. I was told to keep a diary of what he ate and to make an appointment to see a nutritionist in order to learn how to adequately feed my son.
In my friend’s case, she was a ‘bad mum’ because her son was merely naughty and not disciplined enough.
Both of us are also ‘pushy mums’ — and by this I mean we are both fierce advocates for our children and we go with our gut when we know there is an issue. I know I have somewhat of a ‘reputation’ when it comes to sticking up for Geordie; my friend (who is newer to this world than I am, her son being half Geordie’s age) is also developing a reputation.
This is not a bad thing!
If I hadn’t ‘gone with my gut’ (and some wonderful advice from a colleague early on), then I imagine Geordie would not have a diagnosis and our life could very well be quite different now.
As a mother, ‘going with your gut’ often involves saying things, and admitting truths, about your child that no mother should ever have to say. It can be incredibly difficult, not to mention stressful and demoralising. The ‘blame game’ and ‘mother guilt’ both come into full force.
But, it is worth it!
I am, on a daily basis, thankful for the fact I am a strong person.
I am thankful I am relatively well-informed about most things Asperger’s, and have a network of support to keep me going.
I am thankful I was able to stand up to not one, but two so-called medical professionals who insinuated I was both an ‘overprotective mum’ and a ‘bad mum’.
The fight was long and hard, but every day I look at the outcome of this — my gorgeous, maturing, loving son — and I know I did the right thing. I also know the battle is not over, but am confident I will continue supporting and advocating for Geordie in this way.
This is the message I hope I imparted to my friend, who is really only just beginning her fight.
To all who are in similar situations now (and in the furture) — good luck!