At The Lower End of the "Awareness" Spectrum

Are you telling me because you lost them?

Now that's just creepy

Are you? That's great! I'm the embarrassed proud owner of a really stupid cat! See, it says so on my t-shirt too.

Do you need to know this? Does it make you think better of me? Does it spark any sort of feeling in you that perhaps you should read up more about stupid cats? Or does it make you think "why the fuck are you advertising your stupid cat?"

It's the end of Autism Awareness Month, and there seems to have been something akin to a "movement" going on.  It involves announcing - via a t-shirt or bumper sticker - the fact that you are in some way connected with a child on the spectrum.  This movement seems to have confused "advertising" with the concept of "raising awareness".  I'm all for raising awareness about important issues: autism, palm oil, Kim Kardhasian's arse.  There are a whole shitload of misconceptions in society about what autism is, how it affects people, what it "looks like", whether all people with autism are like Rain Man.  Those misconceptions must be changed, so what one needs to be doing is educating people.  Giving them concrete information. Facts. Sound bites.

T-shirts, coffee cups, bumper stickers and pins on Pinterest proclaiming that you happen to know someone with autism does about as much for the cause as me wearing a t-shirt saying "I love polar bears" when I want people to stop being dicks about whether global warming is happening or not.*

So no, I don't need to know that you're a proud parent of someone with autism, in the same way as I don't need to know you are the proud parent of someone gay or on the Honour Roll or the winner of the National Hotdog Eating Competition.  It's good that you're proud. But I don't need to know about it.

If you want to actually do something to raise awareness and educate people, write an article for your local newspaper. Get involved in an autism activist group. Talk to the kids at the school your child goes to, or any school for that matter.  Go on facebook and twitter and rant to the world. Write your own blog. Write to your government and ask why their education campaigns are so pitiful, why the funding is a disgrace and why you cant get your kid in to see an OT for almost a year.

But ffs stop with the ridiculous slogans. All they do is make the dickhead in Aisle 7 (to whom these slogans are generally aimed) think "what the fuck do I care about you or your kid?" and ensure that neither he nor those like him will give a damn about the real message.


*It is real. Stop being a dick.

Stimming or "why every shirt has holes in the neckline and you hear battle noises all friggin day"

Talk about "stimming" to most folks and you'll get the blankest of blank stares.  When I first heard it I thought it was something vaguely, well, naughty.  The definition doesn't help dispel that assumption either. Stimming is any self-stimulating or self-soothing behaviour.  (It turns out it doesn't actually mean having a turn with oneself.)

It can be anything from dangling your shoe on your toes or twirling your hair, to flapping your hands, chewing clothing, biting nails, bouncing up and down...just about anything really can become a repetitive behaviour that a person finds calming. I'm a chronic hair-twirler and always have been. Even now I have short short hair, I still find the longest piece and try to twirl it. I also used to scratch at the skin on my arms when anxious and I have a mass of white scars there now.  F-Man chews his shirts, any cords on his sun hats, his drink bottle. He throws himself against walls or furniture. Bangs his head on the couch, or harder things sometimes. He shouts random stuff. He babbles. At the moment, he waves his arms around and pretend fights and makes light saber noises. All day. Every day. That's such a joy.  He has a certain way of speaking (almost out the side of his mouth, and babyish) that he enjoys and when he is talking about things he is excited about he will use that voice constantly. His life at the moment seems to be one long bout of stimming.

The advice given to parents and teachers is to never force kids to stop their stim because it gives them comfort, enables them to concentrate or relax, or self-soothe. They will end up replacing it with another one that may well be worse, or they may develop anxiety. Though I guess if your kids stim is smearing poo everywhere, you'll take whatever the replacement is. Forcing them to stop would be like having an itch that you were never ever allowed to scratch.

I've read plenty from parents who discuss how they redirect their child when the stimming is getting too much, by giving them some form of distraction or a different sensory input. A bath, sand play, something off the exercise sheet from the OT, bouncing on the trampoline, maybe a cuddle and a movie. There are LOTS of parents who write about this. They never write about how much it drives them absolutely insane and they want to kill their kid if they do it one more bloody time.

Well I'm not like those parents. I'm going to admit that I have no freakin' idea how to distract and redirect my kid and yes, how I just want him to shut the fuck up for one goddamn hour.

Stimming is usually a reaction to a trigger. It might be a bright noisy environment such as a shopping centre. It could be a certain smell or noise level. It could be lack of routine during the school holidays. To control the amount of stimming, we need to know the trigger.  But how do we find the trigger when there seems to be no pattern to it at all?  I'm clearly supposed to know what it is because I should know my son well enough after 7 years to have something resembling a clue. But I don't.

The stimming has got wayyy out of control over the last few weeks.  Every single minute of every waking hour is the Stim of the Moment; fighting noises from Star Wars, recreating battles from Star Wars in Star Wars Lego, or talking about battles in Star Wars. He wont be distracted from it. He has Aspergers ffs; you think he can be dragged from his latest obsession? Hell-to-the-No.  If we try a different activity, he will somehow find a way to incorporate fighting actions and noises into it.

I'm at the point where I think there is no other choice but to force him to stop, naturally making me the Bad Parent who is traumatising her child. I seriously have no ideas at all how to get this to settle down.  I dont know how to get him to replace the stim with something a little more socially acceptable than acting out death and destruction, or how to find the trigger that makes him stim every waking moment.

It was easier before we had his diagnosis. Then I just yelled at him and he would stop for a while. (By "a while" I mean an hour. And by "yelling" I mean I occasionally may have used the F-word and blasphemed.) Of course, now I can't do that because it's not like he is deliberately doing it to be a little shit.  At least I don't think he is. Fuck. What if he is??

May as well call Child Protection.  Maybe they have some idea what to do.

Your Kid Is Not Gifted and Never Will Be

Remember last century, when it became the fashion to "hothouse" your kid? 

You started signing with your baby so they could tell you at 4 months they wanted milk, instead of just grabbing your boob and screaming.  Then you did flash cards when they were 12 months old, read the Financial Times to them and played them nothing but Tchaikovsky and Wagner. By the time they were two they could recite - on command - quotes you had taught them from Business Review Weekly and tell people who their favourite philosopher was, because you had coached them on that too in order to impress your friends.

Then they get to school and realise they are just the same as everyone else. Average. Working at grade level, producing acceptably average work and passing tests aimed at the lowest common denominator with a average mark.  That's all fine, except their parents have inculcated in their child high expectations that they cannot possibly fulfill.  

There are several attitudes towards giftedness and they all pretty much shit me.  A lot of things shit me and you'll learn that pretty quickly. But the above quote shits me more than most things.

"All kids are gifted!"  And apparently, sooner or later this giftedness will become apparent to all! Your kid will magically transform from average kid in an average class with an average grade to a maths whiz or suddenly code a successful rival to Facebook. Interestingly, this is the polar opposite of what ignorant uneducated many teachers say about early-identified gifted kids: that all kids level out by Year 3 anyway. Which they don't.

It's unclear how this average-to-gifted transformation will occur. When they have been hot-housed enough or put through enough summer schools and enough private home tutoring?  When they reach puberty? When they pick up a violin or meet calculus? And what about before then? Are they average or are they hiding their light under the proverbial?  Are they having the same thought processes and learning in the same way as other kids or have they slowly "learned" to be gifted?  

Well I hate to break it to you, Mr & Mrs Neurotypical and your extremely average Miranda, but every child is NOT gifted.  In fact, only 2% of the population is gifted.  Giftedness has two parts: #1 is a position on the bell curve of measured intelligence. An IQ of over 130 is the baseline of giftedness. 
 

 #2 is its cause. Giftedness is a neurological state. It is a difference - an extreme difference - in the functioning of the brain.  Studies show that those with a higher IQ use a completely different part of their brain to do complex tasks. Frontal lobe activity is significantly higher. The parietal lobe - an area of the brain that is usually folded and associated with visual-spatial and mathematical abilities - is frequently unfolded. They have lower testosterone levels. They have lower cortisol levels, which affect cognitive processing speed, and higher levels of dopamine, a neurotransmitter responsible for reward-driven learning.  I suppose that is one reason why "they" say it is a fine line between genius and madness: too much dopamine and you have schizophrenia.

Last time I did any reading about neurology, it seemed pretty certain that the brain wasn't able to change any of these attributes in order to "open a package" and make mummy and daddy proud. 

 I keep mentioning the intention of the parents here because it isn't the kids coming out with such pithy bullshit quotes. They don't walk around the schoolyard proclaiming, "I'll be gifted too, someday!"  In fact, the gifted kids are more likely to be hiding away from the other kids so they aren't given shit for being the Weird One. "If you're so smart, spell Lamborghini" said a 3rd-grader to my 6yo son.  FFS I just had to look up how to spell it!

It's the parents who create these false beliefs and therefore expectations, reacting to something they don't understand.  It results from them believing that parents of actually gifted kids feel somehow superior (we don't, and we're not) or railing against the outdated concept that giftedness is somehow "elitist". (It isn't.)   Secretly, they want a piece of the "superior, elitist" pie too.  But if they actually did some fucking reading and knew what "gifted" means then they would understand that giftedness comes with a whole raft of psycho-social problems, and in reality I wouldn't wish it on anyone. Maybe then they would stop wishing it on their own kids, and on themselves too.


Whether you are gifted or average, so what if you don't "reach your full potential" and "open your package?* I wasn't aware there was an obligation to do so. Are we a disappointment if we don't? If we don't do anything Nobel-Prize-worthy have we failed our parents? Why is there pressure to "open that package" and DO SOMETHING with your abilities?

Just let kids be. Be gifted. Be average. Be below average. Have a learning disability. Be gifted with a learning disability. Cut the crap about "everyone is the brilliant!" We're not the same. We are not all brilliant. We are not all going to change the world. We're not all good at something.  Suck it up: Miranda is not and never will be gifted and she may not want to do anything more than sit on the grass and look at the clouds. Let her.



*Revolting term and I hope I never have to use it again

The Road To "What The Fuck Just Happened"?

From the first weeks of F-Man's life he was different. He took 5 weeks to get back to his birth-weight. He had to be swaddled as tight as possible and bounced in his baby hammock to be able to sleep. He scoffed at daytime naps.  He had a look that I can only described as being "switched on".

He hit all the milestones early, didnt bother crawling at all and was walking unassisted at 9 months. One day, before he was 1, he sat on the floor near me. One by one he held up his toys, looked me in the eye and said "dis?"  As I gave them their name, he said "hm", put it down, picked up the next and asked me "Dis?" That's when I knew things would be interesting.

By the time he was 18 months, he had gone from such a limited vocab that we had taken him in for assessment to the following week deciding to suddenly talk in complex sentences.  He was obsessed with lining up Hot Wheels cars. They had to be in order, They ALL had to be lined up, and this had to be done on his car ramp every single night or the world would surely come to an end.  He would not, no not ever, have an afternoon nap unless he watched "Wallace & Grommit: Curse of the Were Rabbit". Every.single.day.  I can tell you every hidden joke in that movie since I have watched 10 gazillion times. The paediatrician I insisted we see said "No, he can't have Aspergers because he came over and showed me his car."

He started child care at 2, mostly because I was pregnant with E-Boo and he had to get used to it sometime.  He was anti-social, only playing with his two lifelong friends.  He wouldn't respond to people asking how he was, or saying hello. He didn't cope with being left there at all, but by that time we had no choice.   He was clearly mentally way ahead of the other kids and we were told "I wouldnt be surprised if he's gifted". Well, no shit.  They'll test for that at Kindy, apparently.

At Kindy, he wouldn't play with others. He was remote. They didn't "get" him. They don't test for giftedness or behavioural disorders at Kindy, apparently. They'll do that at school.

So we send him to a private school, after enquiring about their abilities to extend gifted kids.  Special program this, extension that. No, the school doesnt test for giftedness or behavioural disorders. Being a private school they dont get any funding.  We have to pay for that ourselves, privately.  Plus, he's a year too young for the IQ test. They can't give him any special considerations for anything because he doesn't have a diagnosis.

But he is very emotional in the classroom, cant concentrate, quite disruptive, unable to follow rules. He is already at the end of Reception reading at the end of Term 1.  There are other disruptive special-needs kids in the classroom that take up all the teachers time.  No support for behavioural difficulties, to the point that the teacher BEGGED us to talk to the principal about it.  F-Man was stabbed with a pencil by one kid.  Still no support. 

By Year 1 we can finally get his IQ test done.  140.  Highest in logical/sequential and literacy domains.  No shit.  30 points lower in comprehension of emotion and inference from texts. (A difference of 30 pts or more shows a reason for concern.)   Shows some possible aspergers traits. Oh really?

He has a decent teacher who realises what he needs. She does "get" him. He starts thriving intellectually under her guidance.  We get an NEP (Negotiated Education Plan) at her instigation.  Meetings, agreements about what his educational and social needs are.  I requested a referral to an OT to have him assessed for sensory issues. As I am wont to do, I had done a shitload of research on the behaviours he had shown at school.  At the start of this year he the OT diagnosed him with Sensory Processing Disorder.  Well, well.

Year 2.  No fewer than 4 high-needs kids in the classroom. Fuck-all support, no surprise there.  The fears we voiced about that situation eventuated.  He couldn't cope with the noise, the disruptive behaviour of the other kids, he couldnt possibly concentrate on his work.  But he had to do his Year 2 work before he was allowed to do his extension work. He was capable of Year 4 maths, but he was stuck at doing Year 2 because his special needs couldnt possibly be attented to. What the fuck had happened to our agreement in the NEP meeting the year before? 

He was miserable, absolutely miserable. He had gone from being excited about school to hating it and finding nothing interesting.  Extremely upset that he should be on year 4 maths and wasnt allowed to do it. He was being teased about being "smart". He was teased about having to wear headphones in the classroom so he could work. Other teachers were still treating his behaviour as if he was being deliberately "naughty".  The number of kids who would play with him diminished  down to two, one of whom was his lifelong friend.  He was regularly physically pursued and harmed by one of the ASD boys in his class. It wasn't deliberately intended to hurt F-Man, but that's what happened. And when it's your kid you don't give a fuck why.

I put him on the list for an ASD assessment. It was going to cost us a fortune, but the free public health waiting list was over a year long and I was well beyond the point of  listening to what everyone else had to say about it.  The teacher had to fill out a form indicating her experience with him.  "Manages to complete work at appropriate level on occasion with scaffolding."  Appropriate level. Year 2.  On occasion.  WITH SCAFFOLDING??? Are you fucking kidding me????

We pulled him out of school the following week.  Monkey-Boy and I discussed it long and hard and have had many discussions in the past about homeschooling. I always came back to the answer that I didn't think that I could cope mentally and that we as a family unit wouldn't be able to manage it. It would place too big a strain on a situation that was already straining us to the limit.  But this time, there was no choice to be made.  He could stay there and it would kill his soul. The passion he has for learning would be extinguished by a school that couldnt or wouldnt provide the support for any of the special needs students it agreed to enrol.  It wouldn't appropriately teach a gifted child they way they agreed to in his NEP.  It was appalling. It was infuriating. It wasn't going to continue for one more day.

Last week he saw a wonderful ASD Assessment Team of a psychologist and speech therapist.  Again, I'd done my research and presented them with a massive list of all the behaviours he exhibited that were concerning, matched against the criteria in the DSM-5 for ASD.  I think I floored them.  I think they picked me as having Aspergers on the spot and they may well be right. I think once they'd spoken to Monkey Boy for more than 5 minutes they had him picked for it too.  After 3 hours of testing and $900, F-Man was diagnosed with Aspergers.  No shit? I would like to take that report and throw it in the face of the paediatrition who wouldn't even assess him 5 1/2 years ago because he showed him a car.

It's one more week until Term 2 begins. F-Man will be starting distance education with a wonderful school that has assessed him as being a grade above where he was. Who understand that he may need Year 2 Integrated Studies, Year 3 Literacy and Year 4 Maths. and in another term may need Year 5 Maths.  And that's all okay.

Fuck knows if we'll all cope with it, but we have to try. 

The First One

...in which we learn about a family that is most definitely not "normal".

I started blogging in 1996. Except it wasn't called a blog then, it was a Home Page and I coded the damn thing myself. In HTML 1.0. With Blinkies!   I have been writing a "proper" blog since 2005. That has to be some sort of blog-world record for longevity, and my god that's a lot of talking shit.   I wont be linking to that blog for privacy reasons. I'll explain later. Then you'll be all like "man...that's fucked up" and I will agree. I also don't allow Anonymous comments here. Own what you say, or don't say it.  No hiding behind the screen allowed!

I stopped writing at the lowest point of my life, hospitalised for suicidal ideation. I'm properly medicated now. It's all good. Over the last year, my life has taken a turn for the better, then it took another - unexpected - turn down "we totally didn't sign up for this" lane.  What better time to start afresh with my blogging than having absolutely no idea what I am doing and telling the world about it? 


This is a blog about neurodiversity. About a whole family of people who are anything but the Average Bear.  About how the hell are we going to deal with all this shit and not go more insanerer.  Its about Autism, giftedness, mental health, homeschooling, disability, raising a special needs kid when you are special needs yourself, and sharing information. It's about building a community of people in the same boat on the high seas without a life-jacket and no compass.

Let me introduce the Cast of Characters:

Me - "Tawanda."  Some people have thought my name was "[adjective] bitch".  Sometimes they are right, but they just used the wrong adjective. Diagnoses: Bipolar 2, Degenerative Disc Disease (my discs are all getting irreparable squished), Peripheral Neuropathy (one of the discs squished my sciatic nerve and caused permanent damage), Chronic Fatigue Syndrome, probable Aspergers, gifted.  Recovered from alcohol dependance. Live with pain 24/7.  Full time mum. Full time Carer of Number 1 son. Soon to be homeschooling teacher.  Not "normal".

Husband - "Monkey Boy." Pretty obviously Aspergers but undiagnosed. Gifted. Studying to be a librarian.  Full time official Carer of me. Soon to be homeschooling teacher #2. Not "normal".

Number 1 Son - "F-Man", 7.  Recently diagnosed with Aspergers and Sensory Processing Disorder. Assessed as gifted at 6.  Pulled out of school at the end of term 1 this year to start homeschooling.  Not "normal".

The Little Sister - "E-Boo", 4 1/2.  Performer extraordinaire. Singer, dancer, writer of songs, teller of amazing stories about her teddies.  Starts school in 8 weeks. No doubt will be assessed as gifted in 12 months when she reaches the age limit for testing. It would be a bloody miracle if she isn't Aspergers too. Not "normal".

I will be writing about all of the stuff that goes along with being anything BUT neurotypical. Not being "normal" can be confusing, isolating, painful, lonely, exhausting. It can also be fun. Sometimes.  When it is, I'll let you know and we'll celebrate it annually.

So welcome!  Let's get this freak-show show on the road.

Under Construction

I haven't constructed a blog since 2005, and HTML has changed a tad since then.  Things will be weird for a bit.  In the coding.

Art imitating life.