Tuesday, July 20, 2010

Passing it on

The following arrived in my inbox this morning, courtesy of an email list, mostly inactive, that I've been lurking around for years.

It reads to me like the author would like it passed on, and though I usually hit the delete button the moment I see the words 'send this request to ... people you know', this time I think I will post it here.


It's never just about Ability…?
A call for reflection - a few minutes at lunchtime 29 July 2010 –
Let’s make lunchtime today a time of inclusion, not exclusion. Let’s think about recognising and supporting all special needs people, regardless of their abilities or inabilities.

I believe that from birth to death everyone has the opportunity to experience the wonders of ability, as well as the frustrations of inability. We all experience the wondrous diversity of the human mind. For some, the extreme zones of ability and inability are infrequent or short visits. Others are trapped in, or find themselves leapfrogging between, the extremes.

People at either extreme of the ability / inability spectrum are generally recognized as having ‘special needs’. Most commonly, special needs people are associated with having visible disabilities. Yet, the majority of people who have abilities also have disabilities, often hidden from sight. All too often, we fail to see the weaknesses in those with abilities, just as we fail to recognize the strengths of those with inabilities. These difficulties are not always medical or biological. They can also be systemic, situational, sociological or political.

Each person is an individual, with a unique degree of ‘ability’ and ‘inability’. Stereotyping often restricts people to one end of the spectrum. Sadly, this denies recognition of their other abilities and or inabilities.

As a community, how we face these ‘special needs’ helps to shape our culture and attitudes to life long learning. As individuals with special needs, how we feel and how others treat us affects our character, general wellbeing, stress levels and how we cope with life.

On 29 July 2010, I am giving a talk at the 11th Asia Pacific Conference on Giftedness. My paper is about suggestions regarding school policy for special needs children, at either end of the ability spectrum. I decided that to coincide with this presentation, I would run a Call for Reflection campaign. I believe that there is not enough understanding of the difficulties of special needs people. I believe that there is too much stereotyping, and that this needs to be raised in the public eye.

Thank you for taking the time to read this. If you are either in this position, or know of a friend, relative, partner, work colleague, and you would like to take some action on their behalf, then please:

1.     Reflect on these problems and solutions at lunchtime on 29 July 2010. 
2.     Send this request to as many people as you know. 
3.     Send a message of hope to these people, so they know they are not alone.  
4.      Visit our website www.g3n1u5.com for more details.
5       Facebook Event. http://www.facebook.com/#!/event.php?eid=109599895757172
6.      Facebook Cause  http://www.causes.com/causes/506402/members 
7.      Email Tony  tony@g3n1u5.com 

About the Author

Anthony Nolan, OAM, JP, who scored a perfect score in an IQ test at 99.9 percentile, is the current treasurer of the NSW Association for Gifted & Talented Children, and the gifted children's coordinator for MENSA Australia, the high IQ society. He runs online support groups for gifted adults and visual spatial thinkers, mentors children, contributes to gifted publications, and has advised members of parliament. Tony has Aspersers, Dyslexia, and ADHD difficulties. Tony received recognition from Rotary, NSW Parliament (Lower House), a Local Hero Award (Lane Cove), and received an OAM in 2001, for his contributions to community. 

Absentee Note

I've been away for a while, haven't I? Excuses forthcoming -
It was school holidays and my computer is in the main living room, so I had NO PRIVATE TIME, and I can't write about the boys when they're reading over my shoulder.
Once the school holidays finished, the first week of school was just horrible.

I've almost recovered from the trauma of last week, but now I'm on holidays, and have been learning to play on eBay in an attempt to clear the junk from our garage. And isn't eBay a black hole? I'll just do a bit of price research, and take some photos of the junk, and ooh, look, a bid... it's time for dinner already. At least it's a fun black hole, unlike the one I fell into last week.

You see, it goes like this - Dreamer is doing a University chemistry subject while at high school. They have classes after school once a week taught by their regular teacher. We'd received paperwork last term about the need to attend the Uni for 3 days to complete laboratory assessments. Said paperwork was promptly filed under 'worry about that after the holidays'.

Picture me making my first morning coffee on the pupil-free Monday at the end of the school holidays. I'm very relaxed, and plonk myself in front of the computer to do my usual email check. There's one from the University coordinator, with attached schedule of what experiments are to be done on which days.

I'm on holidays, the kids are on holidays, do I know what date it is? Nope. But a little warning bell goes off, and I check my diary...

Watch the coffee go flying. Watch Lisa look at the date, and the clock, and run around the house like a headless chook.

It was 7:30am, and Dreamer had to be at Uni by 8:30 to start day one of the practical assessments, and up until that minute, we'd ALL believed that it was going to be a quiet, last day of the holidays, and Dreamer was still asleep, and Dreamer has a - let's say difficult - time with transitions and coping with the unexpected.

I don't know how I did it. I have NO idea how Dreamer did it, but we made it, through peak hour traffic no less, to the University on time. Ideal preparation? Reading the provided workbook for the experiments? Calm and ready for an assessment? No, no, no.

Day one went surprisingly well, and Dreamer received great marks for his two experiments. During the drive home, however, he looked exhausted, and hardly said a word.

Day two was a disaster. It was probably a delayed reaction to the stress of the Monday, something that is a bit of a pattern here. He went all passive resistance, and just didn't get out of bed, and said he had a headache, and dragged his feet, and I pushed and pulled and nagged... but he got there. Fail marks on the first experiment, and scraped through on the second.

Day three was a half-day with only one experiment to do. Dreamer woke, ate breakfast, cleaned his teeth and went to his room to get dressed. I dropped my guard, and popped onto the computer to check emails.

Wrong, wrong, wrong.
He didn't get dressed - he went back to sleep.
I didn't realise until I called him when it was time to leave.

Recriminations, frustrations, encouragement, hair-tearing.

I remembered reading that the lab. doors opened at 8:30am, and closed at the beginning of the assessment at 9am. We were never going to make it in time, but we kept going. I dropped him off at 9:05, and parked nearby, expecting a call to let me know he'd been locked out and missed the assessment.

He didn't call. In fact, he did extremely well in that last experiement.

I felt completely wrung out. I felt like I'd been dragging a dead weight for three days.
He says he really, really wants to do something, and yet continually self-sabotages with his passive resistance.

Was the stress of unfamiliar surroundings and the pressure of  assessment that hard on him? He was at the Uni. from 8:30am until 4pm for two days, and 9am until midday on the third. He was effectively non-functional for the rest of those days.

Very soon, I have to stop dragging him and pushing him, not least because I'm exhausted by it.

If that's what's ahead in his life (and mine) if he goes to University, then I don't think he'll be going to Uni for a few years yet.

She canna take it Cap'n

Thursday, July 8, 2010

What did you say?

And what did you really mean?

The boys walked down to Blockbuster yesterday, and rented a few movies.
I arrived home from work last night to find them all lined up along the sofa, engrossed in No Country for Old Men.

At the end of the movie He-Who-Has-No-Nickname, feeling all warm and fuzzy, said "It's wonderful how you boys are starting to watch good movies."

A nice compliment on how their taste is developing? Well, no.

The night went pear-shaped.

Dreamer launched into a defensive tirade about how No-Nickname was wrong, and listing 'good' movies they'd watched before. Curly started in also, and everyone was talking over the top of everyone else.

Poor No-Nickname, who'd had a long day of chores* and kid-wrangling** while I'd been at work, lost it and went back at them for being ungrateful, interrupting, not letting him finish, and stomped off outside.

I was in a better place (having had a pleasantly quiet afternoon at work), and was left to pick up the pieces. Thank Maud for tag-team parenting.

Dreamer and I sat and talked.

I had to explain that 'starting to watch' meant 'starting in the last year or so', not 'starting now'.
Dreamer's eventual response, once he'd calmed down, was "Why didn't he SAY so, then?"

The explanations and calming took about half-an-hour. All over one, little, throw away, one sentence, compliment.

**Dreamer's friend C has been staying with us for most of the week. C is  seventeen also, but has not been trained in the ancient arts of avoiding the piss-and-miss, or even in cleaning up if you make a mess, or opening the blinds in the bedroom in the morning and closing them before you go to sleep, or hanging up your towel after a shower instead of leaving it crumpled on the bed, or it might be a good idea to look for yesterday's towel before getting a fresh one from the cupboard, or ...
His mother asks us "Is he normal", and we say "No", but she doesn't believe us.

*Chores included getting the kids to help make dinner. It goes like: C would you slice the cheese please? OK. Dreamer, would you slice tomatoes please? OK. They both do exactly, precisely what they've been asked, and when your back is turned, drift silently out of the kitchen. You go and find them back on the Xbox, and ask them to come back to the kitchen, and they say "But I've done what I was asked."

Meanwhile, Speedy and Curly do their bits, then turn and ask "What do I do next?" And whinge later about how they always end up doing most of the work, which is true.

Sunday, July 4, 2010

The Education System with a capital 'S'

I don't hate it. It's the only way. If you have masses of children to 'educate', you have to design a system that will work most effectively and efficiently for the largest part of the population.

So, I'd guess that the traditional system works OK-to-great for about 80% of the population.

Now, what to do with the other 20%?

The general system will fail them. It has to. It is not designed for them. Statistically speaking.

Oh, there are PC nods towards the minorities, but they are so thinly spread. I doff my cap to the many wonderful special ed. teachers and learning support specialists, who are given maybe 4 hours per week per student to work miracles, and keep trying.

Let's take a hypothetical inclusive school. They have 100 students. Of those, 80 are catered for in 4 classrooms. Great. What happens to the other 20 students?

For the kid in the wheelchair, the school must build ramps and paths. For the one blind kid, railings along the paths, purchase expensive technology, deliver all resources in braille.
For the sole deaf kid, the media teacher has to re-write the assessment piece that had the students analyzing radio advertising.
For the gifted child, there will need to be university level maths courses taught, while not clashing with the timetable for her physical education classes.

Have I mentioned the dyslexic child, the autistic child, the ADHD child, the sensory child, the ... I'm nowhere near 20 unusual children, am I?

Has the school exhausted it's budget and teachers? Yes.

Does each of these 20 children need a truly individual education plan, with ample resources to implement it, to gain an equivalent education to the 80 who are able to (more-or-less) benefit from the 'system'. Yes.

Is it easier just to educate the majority, and treat the 20% as an acceptable number of failures for society?  I think that'd come under the heading of Risk Management Strategy.

I'm sure some will struggle through despite the system, and manage to develop some ability to contribute (albeit not to their full capability) and therefore the actual failure rate - those who are never able to function in society - will be lower.

Toss them to a sheltered workshop, or unskilled 'work', and don't worry about them. Pay the rest social security, and let their parents take the burden of caring.

I really do wonder if the cost of 12 years of intensive, individual education would be greater than the cost of 50 years of social security payments. Call it 'early intervention'. Or 'preventative education'.

Tuesday, June 29, 2010


Delay. Developmental delay.

Have you noticed that ASD's are medically described as a 'delay'. Yes, I'm repeating that word. I tend to do that when the delay is looking like a yawning chasm; when the race leaders are so far in front that I can hardly see them in the distance.

Delay. Delay. Something which can be overcome with time. Your flight is delayed - it'll get there, but not quite as soon as you'd hoped.

Not deficit - which has uglier implications of falling short, gone.

Delay. When I realise at the end of the day that I've been giving Speedy and Curly more responsibility than my eldest son Dreamer, and they've coped and Dreamer has not.

I have to say delay. I have to remind myself that those 12 year old skills today are so much better than the 8 year old level skills of last year.

There is progress.

I remind myself that after the rest of the world finishes their developmental process and arrives at the finishing line of adulthood, Dreamer can, and will, keep jogging along, getting back on track after regular distractions by the side of the road to get to the finish line.

It's just a longer journey.

(This blog post brought to you by: Year 12, Semester One report cards)

Sunday, June 20, 2010

Birthday party wrap-up

The birthday party waS very teenage. Just teenage. Possibly not normal for a bunch of seventeen year olds but damn close.

I arrived home from work about half-way through. There were about half-a-dozen girls, and one boy. Dreamer's best-friend-since-age-seven was under house arrest to study, and for the second year running, not even allowed out to attend his best friend's birthday party. Don't get me started on my opinion of how he's being raised. Another boy failed to get an invitation due to Dreamer forgetting. The boy who did attend had glandular fever and had to go home early exhausted.

Which left the girls.

Out the back, in the BBQ area, standing around, sitting around, chatting, drinking Vanilla Coke, waiting for the pizzas to arrive. Oh how almost-adult.

They played on the Wii, they all crowded onto the sofas and watched some anime DVD's while eating their pizza. Someone raided the cupboards for doonas and the heater. I suspect that was the ever-organised Speedy - he is very good with parties and hosting duties. All very cosy.

At the allotted witching hour, cars began to arrive outside. I was sitting on the front balcony enjoying a glass of red.

A car pulled up. Stopped. Nothing happened. Two minutes later, a party guest emerged from our house, got into the car, and the car drove off. Odd.

Then it happened again, and I laughed - the parents were sitting in their cars texting their daughters. A distance of about all of 10 metres. Ohhhh. One, and one only, parent actually made it to the front gate before being hustled away. Maybe they were in their pyjamas, or maybe they'd been ordered by their children not to embarrass them. Either way, it's a new generation.

In other news to hand this week:

Curly has been home sick all week, and due to the kids' habit of trying to read over my shoulder when I'm on the computer... no writing has been done. I'm rattling through this early on Sunday morning while the boys are still asleep. Shhhh.

Curly now has an asthma diagnosis, to join his eczema (those words never look right). Does this mean that we'll have to investigate the third of the holy trinity, Allergy?? Probably. Grumble. Who wants to take bets that we'll find allergies to gluten and casein in the boy with the 'white food' diet?

Dreamer has completed his end of semester exam block in spectacular style - he FORGOT to attend his final exam. I'd sent him off in the morning, and reminded him that he had two exams on Wednesday, and made sure he had his printout of his exam timetable and room numbers. He did the first exam, and walked home, by which time the second exam was well underway. @#$%#

It's OK. I'm breathing deeply. One more week until holidays.

Saturday, June 12, 2010

Birthday Party

It's two weeks post-birthday, and the party is still not organised. No present yet either.

It used to be easy - set the birthday budget, invite the same three or four friends for pizzas, movies, and a sleepover, spend the remainder on items from the always-growing list of 'must have' Xbox games and books. Done.

He's 17. Things have changed. There is a wider social circle, and girls involved.

We ask questions about what he wants to do - actually we started doing this a month ago.

What do you want to do for your birthday party this year?
Dunno. Have some people over.

Coming up to birthday weekend -
Have you invited anyone?
Ah, no. Well, some can't come.
OK, well how about next weekend?
Yeah, ok.
And what do you want as a present?
Ah, dunno.

OK, so he ended up having a cake on his actual birthday. Nothing else was organised. No way would I buy an unsolicited birthday present for a teenage Aspie. It'll have to wait.

The following week -
What do you want to do for your party?
Umm, have some people over, and maybe a couple can sleep over.
OK, so can you invite them?

Have you invited anyone?
Yeah, ah, no. Some can't come this weekend.
Right, so how about the following week, the long weekend?
I'll check.

The following week, and we're starting to pressure him -
Saturday or Sunday?
Err, everyone is doing different things, and none of the days work.
OK, well Sunday then.

Friday afternoon -
How many people are coming? 'Cos I need to go shopping and get drinks and munchies and stuff.
I dunno.
Well, how many have you invited?
How many is that?
I dunno. Should I phone them?
Yes, please. I need to know how many are coming so that I can shop. Have you told them when?
Ohhhh K. (plucking numbers from the air) Tell them 7 'til 11.

Saturday morning, now.
I've still got no idea. He's been doing all this on his phone.
I'm longing for the good old days, when I could just phone his friends' parents. Now I don't even know half of the friends, let alone the parents.

More coffee.
I'll have to sit Dreamer down and not let him move until he tells me who he's invited, and what he's told them. If he remembers.
Then off to buy the supplies.

I still have no idea about a present.

Thursday, June 10, 2010

Changing Obsessions

My life was overrun by Dinosaurs. They were everywhere. Plastic dinosaurs underfoot, the bookshelves filled with dinosaur books, and it seemed the only conversation within these four walls was about dinosaurs. Heaven help me if I said something wrong- if I didn't know my T-Rex from my brontosaurus.

I only used T-Rex and brontosaurus as examples there because I don't remember any others. The dinosaur era ended, and I promptly forgot it. Dreamer probably still remembers each and every one.

We did Pokemon. How many are there? Over two hundred, and they all bloody well evolve so you have to remember multiple names and who evolves into which.

The Legend of Zelda game. I blame that one for Dreamer's long hair. He wanted a long floppy fringe like Link, and during the growing process got out of the habit of haircuts and hasn't been able to get back into it. It was alright though, because by the time the Lord of the Rings obsession arrived, his hair looked just like Legolas'.

Shiny things. That one was more of a collection, and they also doubled as fiddle toys. Pockets full. At least my memory circuits were spared during this phase - all I had to do was provide shoeboxes, and remember to always empty his pockets before doing the laundry.

Yu-Gi-Oh cards.



Mediaeval period. During his mediaeval period, Dreamer learnt archery and tried hawking. We never got around to the horse riding.

Now we have anime and manga and zombies.

The odd thing is that once you get to these more adult interests, there are actually a surprising number of people out there in the world who share them. Put a few in a room, and yes, they're talking another language but they share it. They even hold conventions where they gather in their thousands.

They sure aren't the 'normal' Australian interests - going to the footy, and hotting up the Commodore- and it would have you labeled weird to talk about the latest in anime around the water-cooler while the blokes are discussing this week's footy tips.

Hang on. In depth discussions of Japanese film techniques vs. discussions of the on-field punch ups at the football?

I am more than thrilled about Dreamer's choice of interests.

Oh, and Pokemon is back. Apparently, it's a cool retro thing for teens, although I suspect we're only talking geeky teens here. At least by, now he's learnt not to expect Mum to know or care about Pokemon evolution.

Wednesday, June 9, 2010

End of Semester Review

Six months ago, Dreamer was a bit of a mess. Dragged his feet out of bed each morning, off to school (usually late, because he'd get distracted and not have his shoes on when it was time to go), arrive home, fall on the bed, sleep. Nagged awake, nagged into the shower, he'd stay there through dinner time, and be out in time to microwave re-heat his food and eat alone. Sleep, rinse and repeat.


We found a nice psychiatrist, to help with his disability pension application, and she promptly diagnosed him (on top of his ADHD and Aspergers) with major depression and OCD, and talked him into trying an SSRI

He was rapt. He thought it was more than wonderful. He's only missed about two days since February, which is amazing considering he has the attention span of a goldfish.

He told me that the kids at school were rapt that he started talking back to them. His social life has improved ridiculously. Amazing what happens when you actually talk to people.

I've been enjoying the change so much, so happy to see him happy, and thrilled to have him going out and doing normal, teenage, social things. For the first time in his life.

I suppose I knew that we'd have to address the academic issue eventually, but no way was I going to slam down on his new social life to have him catch up on school work. One thing at a time...I wanted him to enjoy his new-found confidence and self-esteem first.

So this week is end of semester exam block, and I can see the reality-check hitting him over the head. He's probably an inch shorter each day when he gets home from school.

I don't know, maybe he thought that with everything going so well, he'd magically pass his exams, and his assignments would magically get done in 10 minutes.

Uhuh. I'll wait for the report card next month, but my feeling is that the marks will be better (as he's been more available for learning in class), but they won't be pass marks. I haven't actually seen him doing any assignment work or homework.

Current status:
Social life - big tick
Happy and confident teenager - tick (except for exam week).

Next priority:
Getting the OCD out of the house.
Maybe in the holidays I'll help him sort out his room, and possibly even throw away some of the junk thats so 'precious'. There are things lurking in the cupboard that have been there for eight years - paperclips, silver paper and other 'shiny things' that were the collectables of the day back in Grade Four.

We could symbolise some fresh starts. Change some habits. He has admitted that (since medication) he doesn't have to do things, but is doing them from habit. Some days he's fabulous, and others he slips back into old habits. 

We could also do some work on timetables. Previous attempts have been abject failures. That'd be something to do with the fact that you actually have to read them (not put them away under a stack of books), and keep track of time.

Next semester:
Academics. Making attempts on things that have been brick walls for so long that he's afraid to even try. It's going to take bucket-loads of encouragement. And reminders. And probably timetables.

Do you think I could get a 'My Frontal Lobe' app for his phone? Because mine is sorely over-taxed.

Sunday, June 6, 2010

Basket Case

Today I remembered a book I bought many years ago, and which has been hiding downstairs in a bookcase for the last few years. A book I credit with saving my sanity, and possibly Speedy's life. No, really, I was about to kill him.

Upstairs it came, for a re-read. It's called The Explosive Child (Ross W. Greene). Just look to your right for a clicky. Dr. Greene's "basket" concept has been underpinning life here for such a long time now that I'd almost forgotten it.

Children do well if they can. If they can't, we need to figure out why, so we can help.

Your child is drowning in a sea of frustration and inflexibility. You are the lifeguard. If you child could swim, he would.

He sets about teaching swimming... no, not really. It's about communication skills, negotiation, and problem-solving.

He advocates beginning with a user-friendly environment. If water was involved, you wouldn't start out being thrown in the deep end, in an unheated pool, in the middle of winter, with the coach yelling at you. Nope. A nice, warm pool, with Mum holding you, and talking calmly is a more user-friendly environment.

If I come home from work tired and hungry, I'm likely to react badly to being told that Curly needs a costume for an assignment presentation due tomorrow. Especially if he demands it before I have five minutes to pour a glass of wine and sit down. "I'm too tired and overwhelmed and I have 25 things to do before yesterday, and I can't do it" would be about my thoughts. Then I'd start ranting irrationally back at him about how poor his planning skills are. When I calmed down, I'd probably be able to think more clearly, and decide that 24 things could wait. Oh, and that he probably had reminded me last week, but I'd forgotten.

Have you ever had someone yell at you, and have your mind just go blank? Where you just can't think, and have no idea what to say? And later, when it's all over, your brain suddenly starts working again, and then you can think of 17 cutting responses, but it's too late.

Do either of those situations remind you of your kids' meltdowns?
Damn, am I still having meltdowns? (Answer: um, maybe, yes, only when I'm stressed out)

This Dr. Greene's contention is that some kids (err, adults), for whatever reason, get overwhelmed, and can't get their thoughts straight, can't process the thoughts fast enough, can't get the words out, or don't know the right words. Their brains get stuck, frustration builds, they explode.

His book outlines the concept of three baskets to teach kids ways to get out of 'stuck' before the explosion:

Basket A is for really, really important things. Safety. Basket A is for times when you say "No", or "you have to", and mean it. Even if you know it's going to trigger an hour long meltdown. For sanity, you don't want to go there very often. I put sibling violence here.

Basket B is for learning. This is the hard one. A couple of high-priority things go here. Pick something that you know often triggers a meltdown, and practice what Greene calls 'collaborative problem solving'. Pick something small at first, because you're learning, and if it goes badly a meltdown will happen. It takes time and effort to negotiate, so choosing something time-critical is also a bad idea first up. If possible, do some collaborative problem solving ahead of time, but be ready to negotiate on the fly as well.

Basket C is for later. Yes, you'd like to solve these behaviour sticking points, but it's triage - some things can wait. Ignore them, let them go, find workarounds. In my Basket C were going grocery shopping, finishing homework, writing legibly, refusing to wear climate-appropriate clothing, not eating what I'd cooked for dinner, messy rooms.

I read a great example today:
Billy had to go on a school excursion, so he and Valerie worked out what problems could be expected, and what Billy could do, and how he could be prepared to avoid them. Billy showed terrific self-advocacy by loading up with his anti-noise hat, headphones, and checking that Valerie had her iPhone with music loaded.

At my house, it was likely to go like this:
"Turn off the TV and get into the bath."
(Now, I could go inflexible right back at 'em, and just know it's going to go pear-shaped, or make it a Basket B moment.)
"Why not?"
(hmm, may or may not get an answer here)
"Is it the middle of a show?"
"You don't want to miss the end of the show?"
(modelling nicer, more expressive language than a flat NO)
"Well, I want you to be clean before dinner, and you want to watch TV... How are we going to make this work?"
"I'll have a bath tomorrow."
(insert negotiations...)
"How about if you watch the end of this show, but then you'll have to have a very quick shower instead of a bath, to be ready in time for dinner"

Yeah, it takes time, but less than the meltdown overall.
And hopefully, eventually, when you yell "Bath time", the kid will yell back "Middle of a show, can I finish it and then be really quick?"

And if they get the idea that you won't ask them to do stuff that they really can't do, and you'll listen to them if they try to tell you why they can't do something, they might not get to that horrible overload state where the words disappear, the brain shuts down, and you have an incoherent, irrational mess on your hands.

And that's just me, when I don't get my glass of wine in time.

Wednesday, June 2, 2010

There's a Merry-go-Round out there

The blogosphere is a big, bad, dangerous jungle. I went autism blog hopping yesterday and it frightened me. Not all of it, but I found some pages that I could only describe as tub-thumping rants written by single-minded zealots.

I remember back in the dim distant past my years of membership on listserves, which were possibly the forerunners of blogs. I remember the years of googling, testing, and searching; of taking the boys to appointments here, there and everywhere; of wanting answers. I remember the boys getting sick and tired of it all and telling me to stop, and realising that I was tired of speaking in acronyms too.

I'm glad I did all that, and I wish I hadn't.

On the positive side, all the testing and reading and questioning definitely helped me to understand the boys, and find tools and explanations that helped the boys understand themselves.

On the negative side, it took so much time. Time from their lives and mine, that could have been spent...

There is an ASD merry-go-round. You hop on when the you get that first ticket that says 'something is different about your child'. The hardest decision to make is when to get off.

The merry-go-round lures you back - a new therapy, a new test, a new cure possibility. This could be the magic bullet for your child, and if you don't try it, you've ruined your child's life. You have to try everything, just in case.

Hop off too soon, and you won't have the information and tools to help your child.

Stay on too long, and your child will be all grown up, and berating you for turning their childhood into a science experiment.

My little guinea pigs grew up and said "enough", and I had to respect that. About five years ago, I stepped off the merry-go-round.

Reading round the blogosphere yesterday freaked me. I found the merry-go-round again, and it was tempting me back for another ride.

The maybes of doubt were creeping in:
"Maybe if I'd put more effort into..."
"Maybe if I'd tried..."
"Maybe I should do a bit more research on..."

Begone, you wicked maybes. I did what I reasonably could. Some things worked, some were a complete waste of time.

My boys are now in control of their own futures (aided and abetted still, and ever, by their mum).

No more merry-go-round for me.

Monday, May 31, 2010

If all you have is a hammer

(This was going to be a comment to Valerie's post: There's always something to learn..., on Jump on the Rollercoaster, but it grew, and grew.)

Is Autism a nail, or something completely different?

Is it a disease, mental illness, behavioural problem... curable, preventable, natural?

It's all so frustrating. Psychiatrists, psychologists, biologists - all merrily researching in their own separate directions.

They're all being theoretical, and we parents have to be practical. We're living it.

Sometimes I wish I could pack all the theorists into a big room, and not let them out until they talk to each other, swap their hammers and screwdrivers, and find the big picture. I'm sure it's there.

At the moment, I don't care so much about cure or prevention - I just want to know the cause(s). Then, we can decide what to do next.

If a child cannot read (general symptom), the underlying cause could be that the child cannot see at all, sees differently, processes language differently, is deaf, learns differently, speaks a different language, has been taught poorly... and in each case there is a specific treatment and/or intervention required to help the child to read.

If you don't know why the child cannot read, you are stabbing in the dark with interventions. Any one thing might work for some, but not others.

Give the whole non-reading class glasses, and you might get some miraculous successes, but for those who can already see, glasses won't help and may even do harm.

That's a clunky analogy, but the best I can think of this morning.

I've learnt to always look underneath a behaviour for the 'why'.

When he was little, my youngest was known as Cautious Curly. He didn't climb or run as recklessly as the others. He'd always hold the railing when climbing stairs. We thought it was just the way he was. His personality.

Nope. There was an underlying reason.

When he was 5, we discovered that he only had sight in one eye. That meant that he couldn't judge distances. And that explained the physical cautiousness.

That was a simple one. It's not curable, not fixable. It is understood and accommodated.

I want to find the 'why' for Dreamer's ASD.

I suspect that what is currently classified as ASD could turn out to be caused by multiple combinations and permutations of the biological, genetic, and environmental, which point to each of the various symptoms
that are found in the DSM. Which is why I want to lock all the researchers from the various fields into one room to swap notes.

I've never heard much disagreement on the saying that "if you've seen one ASD person, you've seen one ASD person". The mix of symptoms varies, and the severity of each symptom varies from person to person.

Can we tease them apart and look at them separately?

We are starting to hear more about sensory processing and auditory processing as separate issues. Allergies are understood to be real. Anxiety, obsessions and compulsions are recognised, but are defined again by symptoms not cause.

I wonder how they might be linked; is there one cause, or a separate cause for each; and why a certain group of people win the lotto with multiple disabling symptoms when others deal with mild single issues.

Maybe I wonder along these lines because I have three children, genetically similar, brought up in the same environment, yet so different.

Pass me the shovel, and I'll keep digging underneath the ASD umbrella for clues. Hey, theorists and researchers, wanna try a shovel instead of a hammer for a change?

Sunday, May 30, 2010

Maths is Useless


There I was, checking updates on my favourite blogs this morning. I popped over to 2e: Twice-Exceptional Newsletter to browse their eclectic collection of stories and links, and found:

"DYSLEXIC HUMOR? The comic strip xkcd gave us pause the other day with a one-panel joke that had us not understanding the joke for awhile, then wondering whether a dyslexic would find the strip funny. See for yourself."

When I clicked the link, I found myself at a familiar looking website.  It's one I often see Dreamer reading. Twice Exceptional minds think alike? That was enough of a sign that I thought I'd stay and have a look around.

Which I did.  
By the way, I think a dyslexic would find that comic funny, but I'm not dyslexic so I could be wrong. It's sure better than jokes about dogs and gods and uniting and untying.

I clicked on a random comic, and the first one I found crystallised where my current worries are,  for my just-turned-17, science/math nut,  Dreamer.

No wonder he has this site bookmarked!
I'm feeling all 'two degrees of separation' now. 

Friday, May 28, 2010

Hard Mode Social Stories

For years, Dreamer has been your average geeky, aspie, introvert - rarely talking, definitely not to strangers, only comfortable in the company of a few chosen friends. Yes, I know the geeky girls adopted him, but that was because he was tall, handsome, and distant. A safe bet. They would talk to him, and adore him from afar, even though he was monosyllabic in response.

After starting on an SSRI a few months ago, he's become positively garrulous. And funny, and cheeky (in a eye-twinkling way). Overnight, I have a 17 year old son who is being social but hasn't a clue.

Last weekend he arrived home at 2am and 1am respectively. Friday night he went with his brother Speedy to a board and card games night. Speedy had organised transport home, but the driver, being geeky, had begun a new game and wanted to finish, so they were later than expected. Fine.

Saturday was another matter altogether. I dropped him at the local library, where he was going to borrow some books, study a bit without sibling distractions, play some DS, and catch a bus home when the library shut at 3pm.

At 5pm, I phoned him:
"Where are you?"
"I'm at (couple of suburbs away)."
"How'd you get there? Did you catch the wrong bus?"
"Yes, well no. I met K's sister and her friend at the bus stop, and they were going to K's house and I thought I'd just go and say hi."

Long pause from me.

"OK, can you catch a bus home now? Be home for dinner please."

At 6:30pm, He-who-has-no-Nickname phoned him.
Apparently, they were having pizza. HWHNN spoke to K, who assured him that she knew the bus timetable, and would organise Dreamer to the bus stop.

At 10:30pm, HWHNN phoned again. I was asleep by then.
"We can't come and get you, please get a bus and come home."

What Dreamer didn't tell his Dad then, was that he'd just missed the last bus. All he heard was the tone of 'you got yourself into this, so you get yourself out of it'. He didn't dare say anything. So, he began to walk home.

At 12:30am, I answered the phone.
"I'm lost. Can you come and get me please?"

After I'd worked out where he was, and picked him up, praying that I wasn't over the limit from a few glasses of wine, we talked on the way home. He'd thought if he just kept walking, he'd eventually get home. He was tired from lack of sleep on Friday night, from walking for an hour and a half, in boots that hurt his feet, with a backpack full of library books. He'd come to an intersection, and had no idea which way to head for home. He was ready to curl up on the footpath and fall asleep.

Big lesson learnt about the danger of missing the last bus, but he was safe, and I'm sure that every teen misses the bus at least once. What am I worried about?

He said the next morning, with a grin, "I'd had caffeine, and I just got spontaneous." No, that's not so bad, either. That's a matter of teaching him that if he's going to be spontaneous, he has to phone and let us know.

What I'm really worried about is that he doesn't know what he's doing, socially.

Inviting himself to a girl's house, just dropping by uninvited on a Saturday afternoon? Not a brilliant idea, but not disastrous. Staying for seven hours, staying for dinner? I hope he gets away with that one. He could either be thought rude for overstaying his welcome, or, K could think she's found a boyfriend.

Dreamer really doesn't have a clue. He already has another girl inviting him out fairly regularly. They are all just friends with common interests, right? Spending an afternoon and evening at a friend's house, eating pizza and playing card games is just that.

Or is it? Are we heading into the murky depths of teenage relationships?

I've got no idea. No idea what Dreamer is thinking. Which means that 'social stories' may have just jumped to a whole new level of complexity.

I previously assumed that the whole bunch of them were as naive as each other, which is why they hung out together. I'm not sure any more.

Help, I think they're growing up.

Saturday, May 22, 2010

This is not my Beautiful Life

As in, this is not the life I had planned before I became parent to a child on the autistic spectrum. It applies also, I think, to becoming a parent full-stop.

Honestly now, who, and I mean name... one... person... that you know, is leading that perfect life?

That beautiful life that you imagined when you were maybe sixteen?

Doesn't everyone imagine when they are young, that they will have a fabulous career, make pot-loads of money, live in a perfect architecturally-designed mansion with a perfect husband, and 2.5 perfect children who never make a mess, or if they do, there'll be a perfect Mary Poppins to sort it out?

What part of sixteen-years-old knows anything?
Life happens, and then you wake up one day, only just on the right side of fifty, and think "How the hell did I get here? Woah, what happened?"

I'll tell you what happened to me - A little decision here, a change of direction there, and a big bunch of 'it seemed like a good idea at the time'.

I...(at sixteen) was going to conquer the world! And be famous as well. Of course.
From that... to a crumbling house in the 'burbs, with a mortgage, three neurologically diverse children, a part-time Mac-job, and loving it?

Looking back with my perfect retro-vision, I would have been miserable as conqueror of the world. It's not really my gig.

So here's a few things that I've found out over the last 17 years since becoming a mother:

I really wouldn't want to wear suits and high-heels every day. I prefer wearing shorts and t-shirts and sandals. Much more comfortable. Besides, suits and  tailored clothing require a tailored body, which brings up the whole issue of (wash my mouth out with soap) exercise. That costs too, these days- time and money.

Then, what about the amount of time and money involved in 'doing' hair and makeup? Anyway, why should women have to do it if men don't? By the time you add up the cost of hairdressers, product, curling irons and straightening irons, creams for this and colours for that... I could buy a library-worth of books instead. Mmmmm, books.

Add up the time it takes each day to fight your hair into some semblance of what that sadistic hairdresser designed, and apply all that makeup, only to spend almost equal time at the other end of the day removing it. Is it worth it? By my reckoning, by not wearing make-up and wearing my hair in a pony-tail, I save about and hour and a half each day. With that time, I can read the above-mentioned library-worth of books. Nice.

I'll move on now to the benefits of  living in an old house: it doesn't show the dirt. It's impossible to get the house looking 'like new', so I'm off the hook. 'Good enough' is a bonus.
I don't have to worry about combining kids, marker pens and designer leather sofas. All I have to do is not have leather sofas. That's easy. Spaghetti stains are only an interesting design improvement on our sofas.

I use the same reasoning about cars. Once, and only once, I bought a brand new car. Within two weeks, someone had scraped keys along the length of one side. I was distraught - my perfect car was damaged. Since then, I have bought only old cars, and when they get scratched, or dinged, it doesn't seem to matter as much. They just gain personality. Same as the walls in the hallway. If those walls gain any more personality, I'll have to call in Shaun of the Dead.

I laugh madly at that television ad - the one where the new mum is surprised by friends at her front door, and all she can think about is whether her toilet is clean enough. Don't you think she should just be happy to see her friends? If they don't like the state of her toilet, they can ask where the cleaning stuff is. Otherwise, they can shut up and eat cupcakes (that they brought themselves, because no new mum ever has time to bake) like real friends.

Thanks to autism, and to be honest, thanks to all my kids, I have been forced to withdraw from the the waste of time and money that is fashion, beauty, home improvement, entertaining, interior decorating... and all those other things that are advertised in glossy magazines.

Ah, there are the occasional regrets, and some (past it's use by date) make-up in the bottom drawer, but I have found so many ways to spend more time and less money.

Someone else can conquer the world - I don't want to any more. I'm happy here.

(Valerie, over at Jump on the Rollercoaster came up with the title "This is not my beautiful life", which I believe is a quote from a Talking Heads song, and started me thinking)

Friday, May 21, 2010

Meme? WTF is a MEME?

I was tagged by E. from Whining at the World
I think I am supposed to answer the same questions, about my Seven Deadly Sins.

(This meme was started by Lori @ Ramblings of a Stay At Home Mum who I don't know, but will visit).

Hey, don't blame me, I don't know what a meme is, except it sounds like it's all about Me, Me.

Sloth - how do you relax?
Reading a good book, or reading a trashy book, playing online computer games (World of Warcraft), and now I have discovered reading and writing on blogs. Argh, too many black holes of distraction.

Gluttony - What can't you get enough of, even though it's bad for you?
I choose the poisons of nicotine, caffeine, and alcohol.
No, I haven't forgotten it - chocolate comes under the heading of caffeine.

Greed - What do you get greedy for?
Refer Sloth. I am a very slothful person. One can never have enough sloth in one's life. Really. If I didn't have a family, I don't think I'd do anything. In fact, He-who-has-no-nickname believes that I don't do anything.

Envy - What makes you green?
Very little. I have this attitude which says that if you want something, you can either do something about it, or not. But if you don't do anything, you have no right to whinge. As you can see from the above, I'm not big on doing things.

Lust - What does it for you?
Can't go past what E. said: "But if we are talking pure animal lust, aka Man I could so do him (sorry to any family members who ever read this), then: Hugh Jackman, Johnny Depp, Robert Downey Jr (that Iron Man body is nice) ….. I think I should stop there."
I'll only vary my list a little bit - Johnny Depp, Hugh Jackman, then I'll go Viggo Mortensen. That should keep me busy enough.

Pride - What are you inordinately proud of?
My three children. Myself and my husband for creating them. The boys again, for growing into such wonderful people despite our, ahem, less than perfect parenting. Hubby and me again, for sticking together through the tough parenting parts.

Wrath (Anger) - What makes you cranky?
Politics for politics sake. Lying. The kids having the same argument for the umpteenth time. The volume on 11. Telephone and door-to-door salespeople.

I need to tag 7 people.  I don't know if I know 7 people in the blogosphere. That's what you get for tagging a noob. How about three. Three is a nice number.

Val, Ro and MM - you're it, because everyone can do with the occasional distraction of writing about Me, Me, Me.

Ro goes over it, MM goes around it and back again, and Val goes up and down at high speed.
Get over it... I did
Meaningless Meandering from a Madmother
Jump on the Rollercoaster

Lisa: Can I go play now?
Mummy Lisa: No, not until you've finished the laundry.
Lisa: Awwww, but I did the dishes. Just one chapter?
Mummy Lisa: Absolutely not. One chapter will turn into two, and by the way, you should have a shower, too.
Lisa: I'll do it later, promise.
Mummy Lisa: That's what you always say.

Tuesday, May 18, 2010

No Apologies

At sport on Sunday there was a new kid. He would have been about twelve.

The boy was asking questions of He-Who-Has-No-Nickname. One after the other after the other. Intelligent questions. He wanted to know all (and I mean all)about the game. Nickname was answering question after question. As you do.

Neither of us gave it a moment's thought, until the boy's mother said "You can tell him to stop if he's asking too many questions".

And the penny dropped - She was apologising for her child.

She must be assuming we were NORMAL people, with NORMAL kids, and this was a NORMAL sport. She must be assuming that we were at that very moment thinking "this kid is a bit weird", and about to start edging our way out of the conversation.

Yes, she had been hovering, watching her child carefully as he initiated social interaction, becoming a bit nervous as the flow of questions became a torrent, and eventually, intervening.

Of course I am imagining all this, but for me, in that moment, it was so real and familiar. The nervous hovering- nervous because you know at any moment the situation is likely to turn, and your child will need rescuing. The watching and waiting - for your child to be rejected by the person he is valiantly trying to converse with.

I considered striking up an ASD conversation with the mother, but just then, I couldn't think of anything 'right' to say, and the moment passed. I think a game started.

I wanted to tell her that her child was safe. That she could relax. That there probably wasn't an NT in sight, child or adult.  That she could untangle that knotted ball of fear in her stomach - the one that twists itself tight every time her child ventures near other people or into unfamiliar territory.

That Sunday afternoons in the park were a safe zone. Sanctuary. No apologies necessary.

Monday, May 17, 2010

Me and Centrelink - Job Capacity Assessments

This was the part where I thought the wheels would fall off.

I knew that the interviewer would be a 'health professional', but what sort of health professional? Psychologist? Social Worker? Physiotherapist? Would they have a clue about autism? Would they see a tall, healthy, walking, talking teenager and say 'Nothing wrong here'?

We got an Occupational Therapist. He had a clue.
I realised that he was deliberately addressing questions to Dreamer. As he should. He would wait an appropriate time for an answer, then, and only then, turn to look at me, indicating that it was now my turn to answer for Dreamer, or expand on Dreamer's answer.

He explained that his job was to translate the medical reports into Centrelink-speak, and to apply the legal 'disability tables' and decide where Dreamer fit.

There are 22 tables. Dreamer might be assessed on Psychiatric Impairment, or Neurological Function, or even Communication Function. I didn't really care, and I have no idea which table the nice OT picked.

At the end of the interview, he said that as far as he was concerned, based on the contents of the report he would send to Centrelink, Dreamer should have no problem with being granted a Pension.

Less than a week later, we received a letter with an application for a tax file number. That was heartening - Dreamer wouldn't need a tax file number unless he was receiving money. Checked the bank account, and there was the money.

A pension application is approved for two years. Phew. That gives us  breathing space. Dreamer can focus for the next two years on learning and training and working at his own pace. He can also buy his own movie tickets, and the occasional can of Coke, or CD, using his own money, just like his younger brother.

ASD is often referred to as a 'developmental delay', implying that given time, the 'development' will get there in the end.

I believe it will. I believe that Dreamer will grow to be a productive member of society. I'm just glad that he's not expected to achieve that by December, when he'll be squeezed out the end of the education system sausage factory after his allotted 12 years.

Centrelink and me - The Visit

I know that Centrelink offices are designed to be off-putting. It wouldn't do to make them welcoming, with helpful staff, and brisk service. That might attract more customers. The plan always works for me - I walk through the door and immediately have this overwhelming urge to turn tail and flee.

I queued. Dreamer stood beside me, hiding behind his fringe, and playing his DS. We queued for twenty minutes to tell the receptionist why we were there.

"Dreamer is here to lodge an application for a Disability Support Pension".

A second receptionist looked Dreamer up and down, and snorted "Youth Allowance more likely". As if Dreamer didn't look disabled enough.

I restrained the impulse to punch her in the nose, THEN turn tail and flee and never come back to Centrelink, ever, ever, again.

We sat, as requested, and waited for someone to call us.

Our document-lodging was much more pleasant. A nice young gentleman noted details of ID, checked the forms were completed correctly, and chatted. Towards the end (and this was the endless document, remember) he started flipping pages faster and faster.
I joked "Is it almost time for your lunch break?
"No, I only work 4 hours a day. I'm on a return-to-work plan. This place gives me anxiety attacks".

I didn't know whether to laugh or cry. I think working at Centrelink would give me anxiety attacks as well.
He picked up the phone and booked Step Four - The Job Capacity Assessment, for the following week.

We turned tail and fled.

Centrelink and me - Forms, Reports and more Forms.

The application forms (for the Disability Support Pension) that arrived in the mail almost sent me to clean the shower with a toothbrush. It was almost a ream of paper.

Baby steps, Lisa, baby steps.

Step One. Obtain a Treating Doctor Report.
But Dreamer hadn't been to a doctor in years. His paediatrician of about 8 years standing had disappeared. I had nothing.

Step One, part 2. Deal with the Department of Health, and obtain Dreamer's medical history. That should help at least.
Put in a 'Request for Medical History' request. More forms!
Receive letter stating that I could not access another person's medical history, and that Dreamer would have to request it.
Request the documents again, in writing, in triplicate, this time with Dreamer's signature on the forms.
Receive a 2 inch thick envelope of photocopies.

Step One, part 3. Find a new treating doctor.
Phone, phone, phone, "I'm looking for a nice, aspie-friendly, teen friendly adult psychiatrist".
I didn't want a child psychiatrist, or a paediatrician, because in a couple of years, Dreamer would outgrow them. I really didn't want him to have to transition to another doctor, and I wanted a doctor who would be able to prescribe medication if needed in the future.
Found one!

By this stage it was October, and I was able to get an appointment for February. Specialist waiting lists are such fun...

On the bright side, I didn't have to deal with those pesky Centrelink forms for quite a while.

February rolled around, and the psychiatrist wanted to 'see' Dreamer for a few weeks, and read his previous medical histories before writing the Treating Doctor Report for Centrelink.

Two months, and one overworked credit card later, we had taken Step One.

Step Two - Completing the forms.
Steeling myself, I allocated an afternoon to completing the rest of the forms. The hardest part up to this stage was answering the questions honestly, quelling the urge to say "no, he's fine".

With each stroke of the pen, I had to force myself to focus on what Dreamer couldn't do. I felt I was writing him off.

I knew that Dreamer would have to read the forms, and know what was written.
How, after all these years of being positive, supporting Dreamer's abilities, could I do this to him?
Spin. Put a positive spin on it. Mummy Spin Doctor.

We talked. We discussed ability and disability. We spoke about how it wasn't wrong to accept help with disability, and how these forms were only about the dis-. Centrelink didn't want to know about the -ability part. Dreamer is well aware of his disabilities. He knows he can't do 'stuff' like other kids his age. It was hard, still to put it out in the open, on paper, in black and white, and hand it to a stranger in a Centrelink office.

I was proud of him (and myself) for going through with it.

Saturday, May 15, 2010

Changing Seasons

Yes, it's that time of year again. The mornings are getting chillier, and the kids are driving me crazy.

Autumn and Spring are the transition seasons, and we all know how much sensory-kids and ASD kids love the T-word.

It seems like only yesterday that I finally convinced Dreamer that it was too hot to wear jeans and long-sleeve shirts, and I swear it was last week that he finally stopped resisting and started wearing shorts without complaint. Now all the pleadings have to start again, as I try to get him wearing long pants and jumpers again.

Speedy was sitting watching TV the other night, and asked if he could get the electric heater out. I looked over, and there he was on the sofa in his shorts and t-shirt summer pyjamas.

"No, we are not putting the heater on and wasting electricity. Go and put some warmer clothes on".
"Oh, so you care more about money than your son freezing" was the pathetic response, and he sat there and shivered for another ten minutes, complaining about his stingy mother.

Ha. I'm a bad mummy, and he lost the standoff. He eventually appeared back on the sofa wearing trackpants and a hoodie.

That was the easy one done.

Except that he's grown ridiculously since last winter, and his trackpants barely reach past his knees, and I'll have to buy new ones, and they won't be comfortable, and... oh, I'll deal with that next week.

Next, Dreamer. I'll probably have to have 'the argument' with him every time he gets dressed for the next month.

I might even have a bit of luck this year. He has his new Senior Jersey to wear for school, and it's nice and soft, which means I get to avoid the arguments we've had for the last four winters about the horrible, scratchy, polyester-knit school jumper. The old scratchy jumpers can be passed down to Speedy, and I am hoping that after a few years of being washed, they'll be a bit softer and attract less complaints.

The seasonal transitions are definitely easier now with older children.

Now that they're taller than me, I don't worry as much about them dying from hypothermia in winter and heatstroke in summer. They probably won't, and if they do it's their own silly fault.

I also don't worry about what other people think.

People will assume that 17- and 15-year-olds have chosen their own clothes. It's not like when you have to send a 5-year-old to school in winter in shorts and t-shirt and you just know that everyone is thinking "What a lousy mother, she doesn't even care if her kid freezes to death".

When they were younger, I played dirty tricks. I used to sneak into their bedrooms while they were at school, steal all the seasonally-inappropriate clothing from their cupboards, bag it up, and hide it. Twice a year.

Then I would endure the cries, whines, and tantrums when they couldn't find their favourite clothing item of the moment. And eventually, they would become so attached to their next favourite clothing item of the moment that I'd have to steal it when the weather changed a few months later.

Apart from that, I'm enjoying the crispness of the autumn mornings.

Friday, May 14, 2010

How to be Popular

To be popular, you have to first be good at something. Or just good looking, but I think that's cheating.

Being the best footy player in the school is always a good start, or being the girl with the coolest clothes.

You could always be the best academically. At least then you'll always be in demand helping the footy players with their assignments in return for protection from the rest of the footy team. Academic excellence is useful as a protection strategy, but doesn't exactly bring status credits.

If you're autistic, and a bit odd, you have a problem.

Luckily boys and girls, technology has gone mainstream. Gameboys brought it out of the closet, and into schoolyard cool.

Want to gather a posse of devoted followers? Just collect the most pokemon, and have the highest score on (insert latest greatest game craze here).

Get those obsessions working to your advantage, and it's a cinch to be best in school.

Hand out a few tips on how to beat that boss, and watch the adulation flow. The other kids will even overlook a few odd habits to get their hands on your DS.

Mums and Dads, don't think of it as wasting time obsessing over a stupid game, think of it as an investment in social credibility.

If you don't believe me, put your child into a social situation, and let them sit in a corner with a DS in their hands. Sit back and watch in wonder as kids drift up to see what they're playing. Marvel as other children ask questions, and get answers. Listen to them ooh, and aah over the leet skillz of your child.


Tuesday, May 11, 2010

The Weirdo Gang

Dreamer collects strays.

Not dogs, not cats, (I will write about the dead possum another day), but humans. Being a gentle soul, Dreamer would offer friendship at school to anyone who seemed as out-of-place as he felt. He collected rocks, shiny things, and all the bully-bait.

He befriended the super-smart kid with the super-fast mouth that made the other kids feel inferior. He adopted the sensitive, gentle kid who was being bullied. He hung out with the kid with the second-hand clothes and uncoordinated gait, and the super-hyperactive ASD kid who drove Dreamer mad with his noise and movement but was welcome anyway. There were a few more who drifted in and out as their need or lack of friends dictated.

By the time year 7 rolled around, they were half-a-dozen strong, and they called themselves the Weirdo Gang. The larger used their strength, the smaller used their wit, and together they were untouchable.

When I asked Dreamer if he had any problems with bullies at school, he'd tell me "No, nobody bothers the Weirdo Gang." They had safety in numbers, and I loved those kids.

I did not choose a high school based on recommendations of the best Special Education Unit, but on where the Weirdo Gang were going. Even so, numbers were thinned to three for Year 8.  Motor-mouth drifted away to another group, then the gentle kid moved away from town.

By this time, though, Dreamer had found the Library Kids, and they had adopted him.

Do all schools have Library Kids? It seems to be a bit of a given - if you like books more than 'footy on the oval', and realise that libraries are open and staffed during lunch breaks, then you quickly discover that you can sit outside the library, and duck inside if bullies are lurking with intent. I know these things because I was a Library Kid too.

Gangs and cliques and school... workplaces... everywhere.

It's survival of the fittest and strength in numbers, but you can't beat a gang of weirdos.

Monday, May 10, 2010

A Breakthrough with my Pancakes

You know that feeling, where you are doing a happy dance inside, while desperately trying to keep a poker face?

Speedy was cooking pancakes yesterday, for my Mothers Day  breakfast. I was starving, it was 11am, and so I was 'helping' by clearing and washing abandoned cooking utensils, and suggesting changes to frypan temperatures.

Everyone else was elsewhere - it was just Speedy and me.

"Dreamer really does have problems, doesn't he?" came out of the blue, quietly, thoughtfully, with a sense of new-found belief.
"Yes. They're real. He's not just faking it".
"When we were at the movies yesterday, I was trying to organise eight people, and every time we wanted to leave somewhere - the game shop, Maccas -  it was always Dreamer who wasn't finished. He took forever to eat his burger and almost made us miss the movie."
"It's a real disability."

We left it at that.

Speedy knows as well as anyone what Dreamer's problems are - he's lived with him for 15 years.

He resents that Dreamer isn't asked to do as much around the house as him. He resents that Dreamer always makes him late for school in the mornings by not being ready in time. He resents that he gets yelled at and threatened when Dreamer gets so frustrated he loses any higher language skills.

Just because Speedy can shower, dress, and peel vegetables for dinner in the time it takes Dreamer to find his towel... Just because Dreamer goes downstairs to put on his school shoes, and gets distracted before getting to the bottom of the stairs and is found at 8:30 reading a book, still shoeless...

It's not FAIR. It just IS.

Which is a difficult concept for a kid. Up until now, I could never quite convince Speedy that Dreamer's behaviours weren't deliberately designed for the sole purpose of annoying Speedy and getting out of his 'fair share' of work.

I hope it's a milestone. I hope Speedy can let go of some of that resentment.

Saturday, May 8, 2010

Mothers Day. Can I has Pancakes?

No, I can't send 'em back, and return to my little inner-city flat where my non-work hours could be spent reading books (because the internet wasn't invented then).

Now that I've got that out of the way.

When I first decided on this parenting thing, I had NO IDEA. I knew nothing about babies or children. It just seemed like a good idea at the time.

When Dreamer arrived, I just thought "This is hard work". I would read all the parenting advice in books and magazines, and think "I must be doing it wrong. My life is nothing like that. I just can't get a grip on this parenting business".

While I was staggering through the first year, still thinking I'd get the hang of it, I kept hold of the ideal of the perfect family- a pigeon pair. And so, 22 months later, Speedy arrived, and it got worse.

This was ridiculous.

I grew to hate those magazine articles where mothers spoke of the Joys of Motherhood. It was all lies. Or if they were telling the truth... what was wrong with me?

By trial and error, I found a few things that helped make it easier. Bugger the parenting guides - they just didn't work. Bugger the child health nurse's advice - it just made things worse. It was impossibly hard to ignore the 'experts'. After all, what did I know? Doubting myself? Always.

And... I still wanted another child. Was I completely mad? Ah, it was the lure of a daughter. What woman doesn't want a daughter?

It took more than a while to convince he-who-has-no-nickname that we should make our lives even more difficult, so it was three and a half years until Curly joined the family.

Curly brought with him huge changes.

It wasn't ME. I wasn't a bad parent. I had actually developed awesome parenting skills in the three years I'd been doing it.

Curly was EASY to parent. He did all the things that babies are supposed to do, and it was dead easy. I loved it.

The feeding, the sleeping, the discipline - all the parenting advice just worked first time with Curly. Bloody hadn't for the older two.

With Dreamer and Speedy, I'd tried the parenting advice, persisted through failure, thinking it was my failure, then experimented, abandoned, tried everything I could think of and then some, and, in utter exhaustion, invented 'things that worked for us'.

With Curly, I'd fire the first shot in my arsenal - and it'd WORK.

Sheer joy and utter bliss.

So Happy Mother's Day- Especially to those who are doing it tough.

May you find paths that work for you, and remember that Parenting Advice (with Capitals) that doesn't work, can always be used in the Kitty Litter tray.

Friday, May 7, 2010

Me and Centrelink - it's Complicated

I am perhaps not alone in being overcome with a sense of dread when faced with 30 page forms.

Taxation. Centrelink. If yes, go to question 25, if no, go to question 94. Checklists are on the back page. If you answered 'maybe' at quesion 5a (part B) ensure you have attached every document you can dig from the bottom of the filing cabinet covering the last 20 years, duly notarised.

I consider myself reasonably literate, but these forms leave me with a headache, and send me into a procrastinating flurry of, oh, almost anything. I'd rather clean the toilet than deal with Centrelink forms.

It all started last May (see how good I am at procrastinating?), when I received a nice letter from Centrelink, informing me that when Dreamer turned 16, he would become an adult...

You have to be joking. Eeeek. What a terrifying thought.

... And when he became an adult, I would cease to receive my Carer's Payment (child), and he would have to apply for an appropriate payment on his own behalf, and if I wished, I could apply for a Carer's Payment (adult). It was accompanied by a nice 15 page booklet, listing a million possible combinations and permutations of benefits, for which Dreamer and/or I may/may not possibly be eligible.

Right. How hard could that be?

When Dreamer was younger, on a friend's advice, I'd applied for a Carer's Payment. It wasn't hard- Attach a document specifying that he was diagnosed with a condition on their 'automatic qualifying' list (such as ASD), and bingo. That the payment was barely enough to keep Dreamer in Pokemon was irrelevant. Every little bit helped.

So on that fateful day in May, I read the Centrelink book of suggestions and carefully vaguely worded eligibility criteria.
May as well try for the Carer's Payment (adult) for me, and for Dreamer... oh, the most likely looking was a Disability Support Pension.

That sat me down with a thump. That word 'Pension'. It just resounds with failure- can't get a job, useless, good for nothing. Dreamer is not that. I know he is not. He knows that he not. But Dreamer, as a fresh new adult, would have to sign the paperwork, and go through the assessments. Would he do it? I didn't even want to suggest it to him.

Yet, at 16, a teenager needs his own bit of income. Speedy was on track to find a part-time job, and Dreamer, 2 years his senior, was not even coping with part-time school. No way he'd be able to take on anything more.

I put the idea to Dreamer in those terms. It felt like I was slapping my own child in the face.

I told him it would be temporary - just for a couple of years.

Breathing space, to let him focus on getting as much learning done as possible.

I suggested that he didn't have time for a part-time job like other teens, and that the Pension could be like his part-time job.

He liked the idea of a bit of his own income, no matter what label it came attached too.

He agreed, and I phoned Centrelink to ask for the forms.
(to be continued)

Communicating in Cars

Overheard in the car on the way to school this morning:

Speedy: Like, they had to do an essay on How to Kill a Mockingbird.
Dreamer: (deadpan) Wouldn't you just strangle it?

(Note: Speedy has not read To Kill a Mockingbird, and has mis-heard the title. Dreamer was being his usual literal self. He is getting much better at recognising when he is being literal, and turning it into a joke. Speedy has been working on improving his marks in English with a view to moving to the advanced class. He needs to get A's and is almost there-. He was telling me why he has changed his mind about doing advanced English).

I shouldn't really drive Speedy and Dreamer to school. They have legs that work. They could do with the exercise. School is only about 1.5kms away.

Dreamer, though, absolutely insists on carrying everything he might possibly, even conceivably need - a folder with a notebook for each class, previous notebook for each class just in case he needs to refer back to something they studied last term, text book for each class (whopping big Physics, Chemistry, Maths texts), lunch box, drink bottle, at least two novels, and a Nintendo DS.

I've tried. I've tried to the n-th degree, where n = ASD. "Dreamy, do you really need two novels? Wouldn't one be enough?".
"But Mum, I might finish one, and then I'd need a spare"
"You're only half way through the first one. You won't finish that today. Leave one at home. Please?"

And so, his backpack weighs in daily at around 15kgs, and I take pity and make a deal. I drive them to school, and they walk home.

They say that taxi drivers and hairdressers hear more secrets. Mum's taxi drivers do too. I'm delighted to say that my ASD son becomes positively verbose in the back seat of a car.

I can ask leading questions, and actually get thoughtful answers instead of the usual "dunno" or "maybe". If there are two or more kids in the car, I can just keep my mouth shut and eavesdrop. If I want to find out what's really going on in their lives, how they are feeling, or what's upsetting them, all I have to do is offer to drive them somewhere.

Why don't they realise I am there?  Why aren't the usual rules of censoring disclosure in conversation applied? Does it have anything to do with the speaker not facing the listener?

Is it like an ostrich putting it's head in the sand to avoid enemies- if you can't see someone's face, then you aren't talking to them, and they can't hear you?

Wednesday, May 5, 2010

Once Upon a Meltdown

Once upon a time, when Dreamer was at pre-school, Curly was just a bump, and Speedy was three, we moved house.
We moved into a nice old house, in a nice old suburb, with nice old neighbours.

At the time, we were stumbling through this parenting business. Speedy did meltdowns. Big, loud, long meltdowns.

We were also just discovering that whatever the parenting books said, the opposite worked best for Speedy. If I tried to hug him close to calm him, he'd escalate, and escalate, and escalate until I let him go. Only then would he begin to calm down. We'd joke that he sounded like he was being murdered. There were more than a few days where I would find myself sitting on Speedy's bed, hugging him, while he screamed "Stop, stop, let me go, let me go".

We never thought about what the neighbours were hearing.

One day, DH (he-who-will-get-a-nickname-when-I-think-of-one) was in the garden, watering the plants with the hose, when he got chatting over the fence with the neighbour. Speedy and I came out to chat too. It was all very neighbourly until Speedy asked if he could water the garden. He didn't want help. He wanted to do it all by himself.

Picturing a three-year-old aiming the hose up, down, through the window, and all over the neighbour, and being in the middle of a conversation, DH said the magic word. "No".

And it started.

Speedy stood there and screamed. And cried. And howled like he was being beaten. It was an Oscar winner.

The neighbour watched with a look of horror on his face.

Then he spoke. "Is that all it takes?" he asked, in a stunned kind of way. "To make him scream like that?"
"Yep" I replied, with a tired, watery grin.

It was only afterwards that it dawned on us how close we'd come to having the neighbour report us for child abuse.

Monday, May 3, 2010

Public Face/Private Face

I think I was about fourteen when I realised that my friends didn't think the way that I did.

It probably happened when a group of friends were gushing about their latest band crushes, and I just sat there, listening, and thinking "How absolutely inane, I really don't care who's the cutest boy in the Bay City Rollers. I'd rather be in the library with a good book".

I also knew then, with absolute clarity, that if I actually said what I was thinking, I'd be friendless during the lunch hours for the rest of my school days. At the time, that was a big thing. I did not want to be friendless in high school.

And so I discovered observation and acting.

Oh, I gushed, and bought Sherbet records, and fan magazines, and had long conversations over vegemite sandwiches about what I'd say when I met the popstar of my dreams!

"Oh Eric, he's so cute!"
"Shut up, Eric's mine"
"Oh sorry, I forgot. Umm, Who do I get then?"

Then I had to go home afterwards and have a good lie down, listen to some Doobie Brothers, do maths homework, and read Lord of the Rings.

It was hard work, having school friends.

I watched the ABC Doco  on Compass from last night, and it was Akash (the musical one) that reminded me of all this.

Lately, I've been aware that gradually, imperceptibly, over many years, I've been using the public faces less and less. I just don't want to any more. I still have to keep it up at work, of course, but I forgo the gossip and water-cooler talk.

I don't want to go to parties, or social events, or even for coffee, unless I can wear my private face. It's too much like hard work.

Hey, am I turning into a grumpy old woman? or releasing my inner Aspie?

Sunday, May 2, 2010

Alphabet Soup

Yeah, well, I'm home alone, with a new baby blog, and no kids reading over my shoulder asking "What are you doing, Mum", so why not say a few more things?

Like, first off - Valerie, you're responsible for this.  Is this blogging going to chew up my life? Normally on a Sunday afternoon I'd be raiding with my guildies on World of Warcraft.

And then, I was debating whether or not to even mention diagnoses here, or just leave our family as neurologically interesting.

Some of us have labels, and some don't. That's not to say we aren't all peculiar in our own ways, it's just that for some of us, getting along in the NT world has been more difficult.

Being a practical person, I'm not averse to using Alphabet Soup to get what my kids need, if that's the only thing that a school or a government department understands.

But still, there is more to a person than a label, so I'd much rather talk about aspects or traits or tendencies.

Alright, I'll do it. *takes a deep breath*

ADHD/ADD, AS/ASD, CAPD (APD), OCD, major Depression, Anxiety.

They are the official ones, and I don't think I've forgotten any.

Then it starts to get blurry.
The child who is not ADHD is a hyperactive, sensory-seeking, kinaesthetic learner, who the school wanted on Ritalin.
The child who has no labels has oral-defensive issues that have me tearing my hair out.
And I'm still not sure where the line gets drawn between ASD obsessions and anxiety and the seperate labels of OCD and Anxiety.
Executive Functioning, anyone? Where does that fit?
Then start to look at the adults, and surprise, surprise, the apples don't fall far from the tree. 

But there you go. Bit of this, bit of that, whole heap of the other, stir up the family gene pools, and you get what you get - just your average family. ROFLMAO.

The Phone...

Dreamer, at the grand old age of 16 years and 11 months, bought himself a mobile phone yesterday.
So what? Most kids have their own mobile at two these days, don't they?

I'm excited because he asked for a phone.

I mean, a phone is a social status symbol. A way to waste time and money chatting to and messaging friends.
Um.. did I just use the words 'chatting', 'friends' and 'social' in connection with the name of my Aspie son?

I never thought I'd see the day.

He has begun to develop a social life. His very own social life.

Fellow students contact him on MSN, and invite him to a semi-regular study group at the library. Fellow physics nuts, admittedly, and I have my suspicions that not very much studying goes on, and there's a fair bit of going to the mall and buying Maccas and Mother, but to me that's even better.

He attends conventions - Supernova and GenCon - with fellow anime, manga and gaming geeks.

He even appears (ssshhhh!) to have a girlfriend. Well, a girl who phones him and asks would he like to go comic book shopping with her and her Mum. OK, the next step is to work on having him phone her, but it's all good so far.

And so he decided that a mobile phone might be useful.

Since when did a phone overtake a new DS game on his spending priority list?

He's spent the last 24 hours getting it all set up. Yes, it takes that long, and I don't think he's even added any phone numbers yet. There's the time, calendar, ring tones, message tones, wallpaper, copy MP3's from the computer, tune the radio stations, connect the wi-fi to the home network, alarm clock, and OMG I want a new phone too. (sorry, techno-junkie here got carried away)

I'm sure I'll have to provide more than frequent reminders over the next weeks to actually ask people for their numbers, and give them his. That's just small bikkies.

I can't get the grin off my face.

Friday, April 30, 2010


As the mornings get ever so slightly chilly, it's time for Dreamer to wear for the first time his Senior jersey.

Each year, the school seniors are allowed to wear a personalised jersey instead of the regular school jumper. It's a rugby jersey, the number on the back representing their graduation year, and each student gets to choose what to have printed in the 'player name' area.

Most students have their name, or nickname, and raps are given for the level of cleverness or witticism of their chosen words.

I wonder what raps Dreamer will get for his choice, or if more than a couple of his classmates will even begin to understand. He had 20 letters to use on his jersey, and he chose just one word to represent who he is.

His jersey says UNCERTAINTY.

When the jersey arrived, I asked him why he chose that word.
He told me about the Uncertainty principle. The boy loves his physics! And he explained that life was uncertain, and that he was uncertain most of the time, and that it was a word that worked on many levels.

I can only marvel at the insight of this sixteen year old.
I hope he wears his jersey proudly.

Wednesday, April 28, 2010

The Culture of Eye Contact

In a world of blind people, you  speak a person's name to get their attention and let them know that you are talking to them. Nuances of voice are important. Eye contact is not, and neither is facial expression.

In a world of deaf people, you turn your face directly to them, so they can read your lips and facial expression, and possibly attract their attention using touch.

In aboriginal culture, speaking with eyes downcast, and not looking directly at the speaker is a mark of respect.

Do autistic people really need to be trained to 'look at my eyes'?
Is there any reason why it should be unacceptable for an autistic person to listen and speak with their face averted?
Because it is the currently accepted way in the 'real world'? Because it makes other people feel more comfortable?

Why shouldn't the rest of the world just get used to a bit of neurodiversity?
Diversity is all too hard. Homogenous is easy - everybody the same.

Speedy is not ASD. His brain wiring, however, means that translating audio (right brain) into language (left brain) ain't easy - he can listen, and he can look, but both at the same time means neither works well.

OK. So real-life implications?

How often have you heard teachers and parents say "Look at me while I'm speaking to you?" And why? Because, of course, if you are not looking at the speaker, then you must not be listening.
An assumption.

Speedy needs to avert his eyes, to concentrate on what he is hearing.

If Speedy is reading or writing, he has to switch off his ears.
The teacher then stands at the front of the classroom, and says "Alright children, finish up now, and get out your maths books".
And Speedy is in trouble for ignoring the teacher, and not following directions.

What a troublemaker - he deliberately ignores the teacher when he's being spoken to, and doesn't follow directions. Off to behaviour management classes with him.

Maybe if he wore dark glasses and carried a white cane?


Uneventful. Morning.
Speedy is ready for school, and prowling the house.
"Why am I always late for school because of him?"
Dreamer sits in front of a bowl of weetbix while reading manga. Four reminders from me.
"Put the manga down and eat please".
Another few from Speedy.
Not quite as polite.

Curly is half-ready, and follows me around the house nagging me to pay for a new game download that he discovered yesterday. He needs his mother. He needs his mother's paypal password. He won't take 'later' for an answer, and starts whining.
Was it only last week I was suffering the same nagging, about the previous latest, greatest, new game?
Run away to the laundry and fill the machine with clothes. Back upstairs, and Dreamer is sniffing scented highlighter pens.
Take a deep breath and practice my morning mantra.
"Breakfast, teeth, get dressed."
First part finally accomplished, however the few metres from kitchen to bathroom proved to be filled with distractions.
"K. One more pen"
 Threaten Curly - any hat/lunchbox/musical instrument left at school today will incur a complete monitor ban until such time as the offending item arrives in our house. I hope that the threat is frightening enough. His poor memory amazingly seems to affect only the (in his opinion) unimportant, unlike Dreamer, who once forgot to get dressed for his own birthday party.

Have I forgotten to eat breakfast?