June 10, 2013

Warning Signs Your School Is On Crack

When you have a kid with special needs, there will undoubtedly come a time that you wonder if a traditional school environment is the right place for them.  We didn't have that worry until this year.  He enjoyed school, to the extent that he didn't want weekends or long holidays. He wanted to be at school, learning.

Then he got to Yr 2 and there were signs that things were not going as well as previous years.  Stomach cramps. Frequently.  Some of them were fake - to get out of school (telling in itself, right?) - some of them were real and clearly very painful, with no food-related pattern to them.  Reports of negative behaviours in the classroom increasing. Kids being deliberately mean to him. Not liking school at all anymore. "Its BORING. Nothing is interesting. I should be doing Year 4 work!"  And he was right. He does Yr 5 work at home.

Those were the little things.  Then the BIG things started.

 1. His teacher knows he cant handle more than two pieces of information at a time,  is extremely literal, and that he has attention issues. So she spends 3 minutes (his friend timed it) in class - in the midst of his hyper moments - telling him how he needed to take responsibility for his learning and blahblah about his potential and he has to stop behaving the way he is.  Erm...NEP, anyone? The conversation about his SPD? Being assessed for ASD? Anyone in there???  A 7yr old ASD kid take responsibility for his learning? Are you on crack???? 

F-Man asked me later that evening "what does 'potential' mean?"  She made him sit through a lecture that he had no hope of understanding, blaming him for the results of his own disability.  Good work, that.

2. Not just one, but 4 ASD kids in one class, with an SSO for 15 minutes in the morning. No other support. No pull-outs, no OT, no breaks.  Crackheads, clearly.

3. No supervision for the spectrum kids that get in trouble every single day for being extrememly rough with other kids. Hurting people (intentional or not, kids get hurt) every single day. There was never any change to the supervision levels, and the school consistently blamed other kids for what was happening. Blamed my kid for trying to defend himself.  One kid is in the office weekly for the same behaviours and has been for 3 years!  The definition of insanity is doing the same things and expecting different results.  Insane from crack.

4. We made our feelings about F-Man being in that particular class VERY clear at the end of last year due to a long-standing issue with one of the ASD kids who would be in with him.  This boy has been consistently aggressive towards him since pre-school, stabbing him with a sharpened pencil in Reception being merely one of many incidents.  So they put them in the same class.  And the crap keeps happening.  Well duh.  Here, have a pipe.

5. We agreed on the NEP in week 5 of Term 1.  Everything in it was ignored.  Everything we mentioned about how F-Man feels about certain things, how he thinks, how he approaches situations, what he can and cant do, psychologically speaking.  "He wont ask for a break. It wont ever occur to him. You have to give him the break card."  So of course, no break card was ever given.  What the actual fuck, even? 

6.  A report from the teacher for his ASD assessment in which she wrote "F-Man occasionally reaches an appropriate level of work, with significant scaffolding" which in normal speak means that "most of the time he doesn't do enough Yr 2 work to pass, but if we give him heaps and heaps of help, then he can sometimes manage Year 2."  Last year - Year 1 - he was doing Year 3 work with no "scaffolding" at all.  Hmmm...what is this telling you???  At home he is coming up with the concept of algebra all by himself.   I give up.

That report made me feel sick.  He was gone within the week, leaving the staff to think "what the hell just happened?" I'm sure.

A week after he left, Monkey-Boy mentioned to him "you seem happier".  He replied "since I left school, I haven't had to worry about B (arch nemesis with ASD) anymore."

After testing, he was immediately put up a year level with his distance ed school, the principal saying he was "more than capable of at least Yr 3 level."

Not surprisingly, the stomach cramps have disappeared completely.

June 06, 2013

What To Do Before An Assessment

In every ASD Facebook group or page that I am part of, inevitably someone new pops up and asks "We are having our child assessed soon. I've no idea what to expect. What do I need to do to prepare?"

My answer: Write down everything. And I mean everything.

Every little thing that you remember about your child from the day they were born about the way they did things, how they slept, how they ate, developmental milestones, behaviours that weren't quite right, things you thought were a bit strange but you couldn't put your finger on what was going on. Wouldnt sleep unless wrapped tight as a bug? Write it down. Screams at hand dryers in bathrooms? Write it down. Changes the type of voice used sometimes? Write it down. Cant handle paint colours being mixed together? Write it down. Takes a long time to respond to questions? Write it down.

Spend weeks doing this. Every time a thought pops into your head, a vague memory from years ago perhaps, jot it down. Write a catalogue of your child's behaviours and put them into groups. If you are having an ASD assessment, match them against the DSM5 criteria. Otherwise just put them into logical groupings: development, communication, sensory, behavioural, social.  Print it up and take it with you to your first appointment and watch the doctor fall over in amazement and gratitude.  It makes their job so much easier when there is a clear list of the issues at hand, and they take you far more seriously than if you (like so many) sit down and in a moment of anxiety forget every important thing you ever knew. Sometimes the Parent Questionairre they give you doesn't contain the right questions to elicit all the pertinent facts, or the clinician doing the assessing doesn't probe deep enough.  Hell, if you have to, take videos of your child so they can see for themselves what may never present in a clinical setting.  If you have everything that you know about your child in black and white in your words it will be more powerful than you can imagine.

June 05, 2013

Diagnosis: confirmed

There is a neatly stapled pile of papers in my house tonight. They confirm my son has special needs, and that he will always have them. That he is not like other kids and never will be. That my life will present many more challenges than the average parent's.

Today's mail contained the thing I have been waiting 6 years to receive: F-Man's Diagnostic Assessment Report.

With that piece of paper comes an official label and as we know, people love labels. E specially those who decide if you should get any help.   His label is Aspergers, which from July 1 will be known as Autism Spectrum Disorder when DSM5 kicks in.  He met every single criteria, not just "must meet two of 5". High achiever.

Its weird, seeing in writing that professionals recognise in him what I have for years.  A verbal confirmation is one thing: It's a tick in a checkbox, a chance to flick the doubting husband the metaphorical Bird, and a surprising sense of relief.A 12 page report with observations of behaviour is something entirely different. It's a shock to read about his functional difficulties & how clearly he struggles with communication and social skills.

I have spent countless hours over those 6 years wondering "well maybe it's not anything serious, maybe it's just (insert random excuse for behaviour)" while at the same time being certain that he had Aspergers. Second-guessing myself for 6 years. That's a lot of not trusting my intuition. I hope I have finally learnt that lesson, for my intuition has turned out to be right every single time, but I rarely listened to it.  I'm none too bright sometimes.

Now we have it written in unequivocal black and white. No more arguing-with-self about it.  Our child has Autism.

There is a neatly stapled pile of papers in my house tonight, which will allow our child access to services he has needed his entire life.

Let's get this show on the road.

Starting Over

I seem to have hit upon some sort of scheduley arrangement for our school day that would appear to be kinda-sorta working. As much as anything can work with a kid who is constantly bouncing of the freaking walls.

F-Man is a dude who needs structure. Or to be doing exactly what he is interested in. Then its all good. No structure = complete and utter chaos and several meltdowns (mostly mine).  So I wrote up a School Day Schedule for him, dividing the day up into roughly half hour segments:
  • online lesson
  • food/free play
  • OT
  • specific school-focussed bookwork
  • lunch break/free play
  • a learning activity from our big list of fun things to do
  • some more OT 
  • and finally some literacy or reading aloud
Having a plan is giving us a focus for the day, rather than feeling like we are just wandering along aimlessly and freaking out because ohmygodheisntatadeskfor6hours.  The amount of work he is expected to do for the school is so minimal I think something must be wrong - and its wayyy below what F-Man wants to be doing - so we are slowly devising a loose curriculum to fill in the gaps. Cool science experiments that cant possibly go wrong dadeda  and learning the structure and process of story writing. Creative stuff here and there, and the best thing of all:  Lego Quest.  52 challenges, one each week. I posted a link to it on a homeschoolers Facebook page and we have now taken up the idea as a group project for a year of fun-filled square-block based learning activities.  It is FULL OF WIN!

Quest 1: Bug Truck has 7 wheel drive, adding stability and traction control during racing across chenille bedspreads.
So while his behaviour continues to be mostly hyperactive and completely inattentive 90% of the time, we are at least managing to get him to engage in SOME learning.  And some days, playing Magic: The Gathering is all the learning he can manage. But we justify it by citing mental maths skills (adding and subtracting attack/defend points) strategising and social skills (not losing your shit when you are losing).

It's a start.