Travelling

aircraft-airplane-blue-219014
Photo by Fancycrave from Pexels

Feeling a bit guilty because I haven’t posted here for a considerable amount of time (and I haven’t kept up to date with the other blogs I follow either – sorry). However, excuses abound — most of them revolving, sadly, around work. This unfortunate blip in my day is a necessary evil, partly because it is funding my second excuse — our upcoming trip to Italy.

 

We’re away for five weeks — three of them during the term, followed by two weeks of school holidays.

Now that our departure date is just around the corner, excitement is starting to creep in — for three out of four of us.

Geordie is not what I’d call keen.

At all.

I quote:

I’d rather go to school than go to Italy.

This is pretty huge for a boy who hates school.

In fact, he revealed the other day he is now telling kids at school that he’s just being dragged along to Sydney with his Mum for three weeks for a “stupid dragon boating event”.

Why Sydney?

He figures it’s the least exciting of any potential destination so nobody will bother asking him about his trip when he returns to school.

I have to hand it to him — it’s a pretty good strategy for someone who hates talking about himself and answering a myriad of boring questions. Sydney is just down the road (sort of) and everyone goes there, so who would bother asking about his time away?

Except, his best friend AND his teachers all know where he is really going.

Oops! My bad.

Just about everyone is astounded when they find out he doesn’t want to go.

Who wouldn’t want to go to Italy?

It’s not Italy, per se. It could be anywhere.

It’s the unknown that’s the issue.

We’ll be staying in lots of places we’ve never been. Sleeping in beds that aren’t ours. Eating off crockery that’s not ours. There’ll be lots of people — way too many people. We don’t have a fixed daily schedule.

It’s like a never ending minefield of what-the-hell-is-going-to-happen-next-edness.

The other issue is the ‘fact’ that “Italy is just full of boring old buildings and museums.”

And then there’s the unexpected twist — in Social Studies, Year 7 have been studying ancient civilisations. Our hopes that this would inspire him in a positive way were dashed when we found out he doesn’t like his teacher. Bugger.

Finally, the ultimate insult. Not only are we making him go and making him miss his downtime at home in the holidays — we get back with a weekend to spare and then the first day back at school is his birthday.

Anyway — we’re going. We’ll modify what we do to ease some of his pain, but not all of it. He will have to deal with new experiences, and I am just living in the hope that once we get there, with new ‘early birthday present’ video camera in hand, he’ll find something to enjoy.

Before I return to my packing (and repacking), I’ll share one last gem from Geordie … I’m not sure whether to be impressed by his creativity or chastened by the reality:

I’m just like an old blanket you drag around behind you everywhere you go.

linus

 

 

Advertisements

A message for and about Mums

 

art-backlit-beach-256807
Image courtesy of http://www.pexels.com

 

Most Mums know their children better than anyone else. (I apologise for this generalisation—I am fully aware this is not the case in every situation, but I’m a Mum so am writing from the Mum’s perspective.)

We interpret the cries of our babies; we know when they’re hungry, tired, grumpy, happy; we know what they want; we understand toddler babble-speak.

For many Mums, this need to decode everything ends to a certain extent when their child becomes more articulate and verbal (at least until the teenage years, when it’s a whole new ballgame).

However, for me as a Mum with a 12-year old high-functioning, verbal, articulate child who also happens to have Asperger’s, it is yet to end. I’m still wading through a daily sea of interpretation, misinterpretation, guessing, second-guessing and problem-solving.

If a job required expert skills in ‘code decryption’, I reckon I’d be a shoe-in candidate.

While Geordie is very articulate in other ways, he often struggles to identify and find words for how he is feeling; or, he knows how he is feeling but can not work out why. This is common in Autism/Asperger’s, but not necessarily definitive, and can be the cause of what many people see as ‘anti-social behaviour’ or meltdowns.

Sometimes, working out the cause of Geordie’s anxiety or distress is simple; it may only take a couple of minutes. At other times, it may take half an hour, or longer — sometimes several days and very, very occasionally I am unable to work it out and we just have to move on.

The process involves a lot of questioning, a lot of guessing, a lot of elimination technique and an ability to decode expressions and read ‘between the lines’ of Geordie’s responses.

No matter how long it takes, or what the outcome is, you can be sure of one thing —

I know my child!

So, when I have other parents, family members, teachers, school psychologists or medical professionals telling me that what I am seeing and hearing and knowing must be in my imagination or the result of helicopter parenting it really makes me cranky. (**understatement)

I have weathered this storm of disbelief for nearly nine years now. On and off.

 

It all began when I asked Geordie’s paediatrician for a referral to Therapy ACT to get him assessed for Asperger’s/Autism.

He didn’t think it was necessary. I did.

If my natural personality weren’t that of a pig-headed, stubborn mule — I would not have taken it further, and we would not have a diagnosis! Our life today would be VERY DIFFERENT.

Since that first run-in, I have dealt with another paediatrician who thought Geordie’s refusal to eat and subsequent weight loss was because I didn’t understand nutrition, so she tried to send me to a dietician to learn how to feed my son. (She met the pig-headed stubborn mule.)

I have come across strangers in the street who’ve suggested I learn how to discipline my child. (They met the ranting tyrant.)

I’ve also known of several teachers (some of them Geordie’s, but not all) who’ve refused to acknowledge the need for ‘downtime’ among other things — I don’t have space here to list them all. (When they were Geordie’s teachers, they met the ‘parent from hell’ eventually.)

On the flip side, I should acknowledge that I have come across equal numbers of people, if not more, who are supportive, wonderful, understanding, flexible …

 

Over the years, my openness about Geordie’s diagnosis and its associated behaviours has increased — in parallel with my lack of tolerance for the non-believers.

Top of my list of people I’m gunning for at the moment is those who listen with false sympathy to a mother’s description of her child’s behaviour. They nod when the mother wonders if the behaviour might be a sign or symptom of Autism/Asperger’s — and then they blow it by turning around and saying something like:

Oh, I’m sure he’s just being a boy.

It’s just a phase — he’ll grow out of it.

Don’t you think you’re just being overprotective?

Really? My child does that too — everyone does.

Or my current personal favourite for its insinuation that it is the mother’s parenting skills that are at fault:

I don’t think it’s Autism — I think it’s behavioural.

I have heard each and every one of these ‘opinions’ multiple times — both directed at me personally, and at other parents.

They achieve nothing positive.

All comments like these ones achieve are to make the recipient (usually the mother) feel like she’s not doing a good enough job, or that she has failed her child.

The other thing they do, I’ve decided just recently, is paint the deliverer of the comment as someone who does not respect the opinions and observations and knowledge of others. In other words — a total tool who is not worth listening to.

A mother knows her child.

We need to respect this knowledge.

We need to acknowledge it — not belittle it.

To all mothers out there who are, or have been, struggling with the negative perceptions of other people:

Do not listen to them!

Listen to yourself! Believe in yourself! 

Do what you know is right for your child — even if you have to fight, even if you shun people along the way, even if it becomes difficult.

Your child is more important than anyone else!

It will hurt. It will be stressful. IT WILL BE WORTH IT!

 

 

Asperger’s – a part of who you are

I need more routines

and less surprise

I need more notebooks

to keep track of my thoughts as time flies

 

ID-10046071 puzzle
image courtesy of digitalart at FreeDigitalPhotos.net

These four lines come from brilliant poem by Devereaux Frazier in which this talented young poet captures Asperger’s and portrays it to a tee. You can read the rest of it, and more of Devereaux’s poetry and musings here.

The point of poetry is to evoke emotion and thought processes. The words mean different things to different people; so what I take from Devereaux’s poetry might be totally different to what other people take. That’s the point.

For me, Aspergers Will Always Be By Our Side is a reminder that this is who Geordie is, and we should embrace his personality rather than try to fix it. Some lines ring particularly true:

   ♥ I need more honesty

Geordie has an inbuilt lie detector (or ‘trying to shield you’ detector) — he needs to know the full truth about things that are going on, nice or not. And he can pick a non-genuine person (‘they don’t get me’) a mile off.

   ♥ the world is just too loud

Yes — literally and figuratively. Loud noises are confusing and confronting. Getting in Geordie’s face is never going to win you brownie points.

   ♥ I need more routine; and less surprise

Sameness brings comfort; it’s only when sameness brings boredom that I know we can safely move onto something else. Surprises? Definitely not. The unknown and the unexpected brings nothing but anxiety.

   ♥ we are what we love

Geordie knows himself so well. My greatest pride in him is that he is true to himself and what he wants/needs — without worrying what others will think of him.

If you want some truly deep insights into what it means to have Asperger’s, Devereaux’s poetry can give you just that. But you have to be willing to listen.

Having a child with Asperger’s doesn’t make me all knowledgeable on the subject. I’ve said it many times — what I write on these pages come solely from my own experiences and don’t apply to everyone … or anyone.

I love that there is a growing community out there of people who are sharing their own experiences, and listening to those of others.

stimming

keep-calm-and-stim-on-8

For many years, Geordie used to intermittently stop what he was doing and start pacing forwards and backwards over a distance of 4-5 metres. Along with the pacing he would do little skip-jumps, move his hands and arms up and down, clench and unclench his fists and sometimes talk to himself in a very low voice.

When he first started doing this, we would try to stop him or talk to him to distract him out of it. We soon came to realise that when he was in this zone, he was unreachable. If we physically stopped him in his tracks, he would become agitated. So we would leave him to it, knowing he would be ‘back to normal’ again in anywhere up to fifteen minutes.

This ‘pacing’ activity started, I think, when Geordie was about four years old. It wasn’t until he was in Year 1 (at the age of 6) that I found out exactly what it was — a stim.

‘Stimming,’ explained the psychologist we were seeing at the time ‘is like an itch.’

If you are itchy, you can end up being super uncomfortable until you scratch it. For people on the spectrum, the need to engage in whatever movement their stim involves has to be met, or they become uncomfortable and agitated, increasing the possibility of a meltdown.

So, Geordie’s ‘stim’ was this pacing activity. Suddenly it all made sense.

For Geordie, the need to stim can occur anywhere: at home, at the shop, in a playground, at school, on public transport, at someone else’s house …

And, the stim can occur at any time: during dinner, in the middle of watching a TV show, waiting to go out, during a lesson … morning, midday, evening.

Over the years we have noticed that Geordie stims more when he is:

♦ stressed, anxious or worried about something. This includes times when he has had a bad day at school, is having trouble completing or understanding something (or losing on the Wii) or when we are going somewhere he hasn’t been before (or has not liked previously).

♦ bored or waiting for something to happen. This is particularly evident during transition times at school, or when he is waiting for something to start.

He is often able to control the physical stimming itself, but not the urge to do it. In his words, ‘My body tells me I need to jump … if I don’t jump it hurts.’

At some point last year, we noticed the ‘pacing’ stim had stopped … completely. We haven’t seen him do this for well over a year now. For a while it was replaced by an alternative stim. This only happened at home and involved Geordie going outside and walking around the yard bouncing a tennis ball. He has stopped doing this now too.

At the moment we are seeing no stimming behaviours at all. The only thing I can think of, that may be a stim, is his compulsive nail-picking. He has been doing this for years, usually when he is bored.

I doubt the need to stim has ‘gone away.’ I suspect as he has become older, he has also become more aware and self-conscious, and has actively sought alternatives which are not as obvious.

Whatever the stim, the important point to realise is that it is a necessary activity for people on the spectrum.

Before we knew what Geordie’s ‘pacing’ actually was, we worried about taking him out, and about what people would say. People do stare. They make insensitive comments. Some look at you with those ‘oh you poor thing’ faces.

You may think that I would be wishing his stimming would stop. But knowing what this would do to his wellbeing, my thinking is actually quite the opposite.

My one wish is for tolerance.

Stimming is not something Geordie does to be disrespectful; nor is it a reflection on how he feels about individual people around him.

To Geordie’s teacher (many years ago) who referred to his stimming as ‘flapping around’ and told me he was doing it on purpose to disrupt the class — bugger you!

But to his teachers in the following years who accepted Geordie’s behaviours and were supportive — thank you. You have really helped to make him the boy he is today. He has come a long way … stims or no stims.

thank-you-animated-zxigBq6cA

If you want to know more about stimming from the perspective of someone who does it … or just want an excellent blog written by an adult, female with Asperger’s, click on this link. Laina Eartharcher is a brilliant writer who is absolutely down-to-earth about her Asperger’s and does not beat around the bush when talking about her experiences.