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.