April 17, 2013

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. 


Tegan Churchill said...

Good luck with starting Distance Ed. F-man is so lucky to have you batting for him, it's so easy for kids to get caught up in the system.

Anything But Normal said...

Thanks Tegan. My experience as an unidentified gifted kid at school, as well as a social outcast, put me in a good position to advocate for what he needs. At least all that shit can be put to some use!

Lioness said...
This comment has been removed by the author.
Lioness said...

I knew all this but it is mesmerising to see it unfold all the same. We are so very unprepared still for greatness.