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.