What can you tell me about Autism?

I asked the nurse about that the other day, she said something about it having to go directly into the bloodstream to work. Even a nasal spray would be more doable than a needle, but if you could it into Nutella the job's done!

*put it

Today I faced off a bunch of thugs who were taking the piss out of Alex. I just called the biggest one a sad prick and gave them the middle finger from the back as I walked past. Because they didn't get a hot rise out of me it nearly killed them. When I got to the bus stop I heard a noise and noticed they had ran off. It turns out this nice old middle class type lady had heckled them from her car and one of them had threw a full lager can at her car and it dented it. When she came and told me what had happened to her car I didn't know what to say because the bus was coming and I was burdened with loads of shopping. I am going to ring the police about this tonight, fuck it.

Oh sweet merciful jeebus calzino. Good on you for defending your boy and generally advocating.

The reason some medicines/vaccines can't be taken orally is that they're protein-based. Give your stomach a protein and it says "yay food" and tries to digest it. That's why diabetics can't just eat insulin, and must inject.

People are working on ways around this - I heard a thing on the radio about a type of subcutaneous capsule that dissolves when hit with a laser, and you can modulate dosage that way. Not helpful for a kiddo who can't have a vaccine, but there is work being done in this area and I hope that work continues.

The obvious solution is to have a nurse stop by the dentist's office when he's already getting sedated dentistry, and just do the vaccinations at the same time. This seems as likely to happen as my butt flying to the moon and back before breakfast, of course.

Just rang the police and it was a waste of time because the lady whose car got damaged hasn't reported the incident.

He has only ever had sedated dentistry once in his life, YMP. The dental check ups aren't much fun either, but we manage to muddle through them:p and thanks for being nice!

Alex finally had his booster vaccinations today. He fought hard and resisted the needles for a good 40 minutes until they weakened him by pouring buccal midazolam onto his crisps! It seems quite funny now but was stressful as fuck at the time.

https://www.youtube.com/watch?v=6JsmtRJ7M24

There has been a lot of hard work to get to this point, but it has been worth it.

I don't know you, Calzino, but that made me cry for joy. Just wonderful.

same, that is beautiful.

:)

thanks people :)

:D

Fantastic :)

Today my son came home from school in a changed t-shirt and jumper. Some classroom assistant had decided that he "smelled bad" because another student said so and refused to sit next to him. So they singled him out and changed his t-shirt and jumper. The returned jumper + t-shirt had a total neutral cheap washing capsule fragrance, but no hint of shit or BO. So I have put a sweary fuck you reply in the dairy (with the caveat of a serious formal complaint if they repeat this pointless bullying shitiness) because I actually mean it and am sick of dealing with these incompetent fucking arseholes. It also coincides with them not offering any other schooling beyond 16 on his latest statement and us telling them that is lame after what they were offering at the educational tribunal we lost.

holy shit

do they let just anyone be a classroom assistant

Definitely yes, as long as you can pass a crb check, then you are fit for purpose to be a classroom assistant or even do any job in schools. Ian Huntley was ok but anytime I worked on a school job this embarrassing caution I have for for theft used to always resurface!

Some of the classroom assistants in special schools are just not fit for purpose and there are more likely to be more of them in the future than less, sadly :(

ime, whether things go well or poorly always comes down to the quality of the people involved. you are, of course, foremost among the great, dedicated people alex has going for him. the others come and go and are good, mediocre or bad without much predictability. how well are you handling the burnout problem (your own, that is)?

I don't really believe I have it that bad tbh. I do drink a bit too much, but I walk a lot and exercise a lot as well. We are all burning out really, nothing spesh about my probs.

glad to hear it. if it were bad, you'd be the first to know

thanks for your kind words anyway, Aimless

you're obviously doing a great job and any child would want a parent like you in their corner

the crb/whatever system is so grotesquely bureaucratic and outdated. we need a revolution to sort out education let alone anything else

dude have they refused him an EHCP?

No, he has a revised EHC plan that seems to have recycled bits from his previous statement and talks about preparing him for post 16 education, but just not at that school. Seeing as it is supposed to be an 11-19 whole autism school/college now and Alex is a definitive case of classic autism, they won't give a reasonable answer why they want rid of him at 16. Which wasn't in the script at the SEN tribunal we lost.

the general standard of EHC plans I come across is terrible and there was a piece in FE Weekly the other week suggesting that most local authorities are way behind in even producing them at all. I'm sure you know your stuff and I know how god-awful schools and tribunals can be when they just plain don't want to deal with a kid, but are you familiar with IPSEA? if not, have a read of their website, it includes advice line numbers iirc: https://www.ipsea.org.uk/

for example I'm pretty sure that by the time you reach year 11 your EHCP should name your preferred choice of Further Ed and any organization that wants to say no has to make a very very strong case

I would say that from my observations you will be completely surprised to learn that the way local authorities, schools and colleges are carrying out this work on the ground looks to my untrained legal eye a lot like they're completely ignoring the law and/or breaking it at every turn

In theory the EHCP should be completely empowering and legally oblige the LA to meet his Further Ed requirements up to 25 - but it sure doesn't feel like it is at times! There is a statement review coming up in a fortnight so hopefully there will be some answers amongst the waffle at this meeting. I really ought to have known about IPSEA, but as terrible as it sounds - I'm often looking for excuses to read anything but this type of important stuff that I should be reading.

Calzino, that is so fucked up. I'm sorry you and your son had to go through that shit.

Is there no way to take this up with someone higher within the school? It's entirely degrading and wrong. Sure you probably already looked into it but this assistant shouldn't be around kids imho. My sympathies.

I am also not a fan of "useful" reading, I feel you. The IPSEA site has some excellent guides to what local authorities should be doing. as I say, my experience on the ground is that most are bending heaven and earth to avoid doing their legal duty. it might be worth calling an IPSEA adviser and seeing if they can do some advocacy for you if you don't feel you've got sufficient legal backing at the moment, because you're right about what an EHCP is supposed to achieve and sometimes it takes somebody who knows the system backwards to make them accept their responsibilities.

I think some medication is probably needed when he is getting violently aggressive at least 5 times a day. As daft as it sounds: the strategic placing of cups of water helps. Even when he is in Id monster mode, if you threaten to pour water over him, he backs off sharpish. And then you can offer him the cup to drink as a calming measure. He has been banned from his transport since last week for persistent violence. Ironic that at the education tribunal we lost, one of the points brought up was that the local authority school don't train their transport escorts properly and they are generally not fit for purpose.

I'm sorry to hear it, calzino. This sort of thing comes up with adults with dementia, too. I've encouraged my loved ones to just give me the damn haldol without hesitation if I'm ever in that situation.

My colleague's book about death for kids (parents and teachers, too) on the spectrum is out! https://www.amazon.com/Have-Question-about-Death-Children/dp/1785927507

can't imagine how difficult this is to deal with calzino; if it's any consolation almost every autistic person i know has grown out of their violent phase once they get into their later teens

well that sounds encouraging. It is manageable inside the house, have explained to the neighbours because the level of noise he makes in rage mode is pretty extreme and some might assume a murder is occurring and call the police! But it is an almost impossible situation if you are on public transport or in any busy, crowded place - because most people can be quite hostile to such situations. The other week some helpful citizen told him to jump off the bridge when he was with my partner. In that type of situation when you are already stressed - I worry that I might lose self-discipline and end up swinging for some impertinent fucker! Not helpful - I know, but part of the risk assessment why going to places and stuff (other than greenbelt walks) is off limits at the moment.

have you got a sense of what triggers the violence?

Sometimes quite innocuous things like whether something goes into the rubbish or recycle bin or the wifi going down can trigger off an episode. But mostly - at least to my neurotypical perception - they just seem to come out of nowhere. As frequent as they are now, there could be so many triggers I wouldn't even know where to start.

also sometimes there seems to be a 10 minute delay in his response to situations, so you can't always tell what it is you have done wrong!

yeah I suspect there always is a concrete trigger but picking them out of the jumble of things happening out in the world can be nigh on impossible, never mind the limited possibilities for preventing these triggers from happening if they're the innocuous behaviours of other people.

it sounds like he's frustrated by disorder and he doesn't have the communicative strategies or patience to deal with it yet except by kicking off. he will develop better strategies and more patience as he grows up. stay strong bro.

Do any of your students have a PDA diagnosis? This is something that has come up in a conversation with a GP - not in a professional capacity, just chatting on a bus.

I think I've come across the odd one, it tends to be a footnote if there's a full diagnosis of Asperger's or autism. I've noticed some CAHMS services seem to be using DSM-V which lumps everything under autism and gives it a type 1,2 or 3 status. I'm deeply distrustful of DSM-V, it feels riddled with politics and unhelpful faddishness to me.

having said that I think demand avoidance is pretty common amongst young men with Asperger's, and it usually seems to be rooted in a desire to just do the thing they're most obsessed with - frequently that's video-gaming or some internet variation of that like gaming videos etc. it's pretty difficult for some young people to get their heads around the idea that somebody won't always necessarily be there to feed, clothe and house them and that they need to do things they find unpleasant or boring in order to develop their independence.

at the more confrontational end of that, I often advise tutors and support workers to use non-demanding language, to phrase instructions as requests and to treat work targets as something that the student has signed up to for their own benefit and progression, so that if they're not doing something they should it's not a failure of "discipline" but a case of them letting themselves down. tbh I think this is the approach you should use with every student, diagnosed disability or not. it comes more naturally to some people than others.

CAMHS, always cock that spelling up

We have just drafted and scanned the deregistration from school letter, because basically they are a bunch of useless fuckers that don't want him there anyway. The head of education lady played me quite smartly. When he got banned from transport she acted quite outraged and asked "can I be your representative here, because this isn't on". She didn't phone back since and is always in a meeting and I have called 3 times in the last 10 days and she never returns the call. If I don't pull him out of the school I will be in the farcical position of getting fined for non-attendance. These fucking people are more full of shit than Blairites and more monosyllabic than TM on mogadons. Absolute fucking nightmare to deal with and completely full of shit.

calzino I am so sorry that you are having to deal with this garbage. you and your son deserve better. sending you love.

Don't worry, he is better off out of that place. And thanks for the good vibes Owen.

Please say that "basically a bunch of useless fuckers" made it into the text of the letter somehow

I'd put in much stronger terms than that if I could, but you have to be careful in these times!

the "bunch of useless fuckers" have delivered bigtime today! I had to offer humble and profuse apologies to the head of education lady who I previously slated to some of her colleagues, but she didn't answer my calls for a fortnight. Anyway she has persuaded us to retract Alex's withdrawal from school letter at the SEN office. For a couple of weeks she is going to take him to school and back as driver and escort, until a taxi can be arranged with me as his escort at first, at least until a suitably trained one can be employed. And she assured us his violent behaviour is something they want to help him overcome and they have the personnel to help him. I can't really ask for a better response than that, especially in the current climate. Sometimes it is easy to forget that his dramatic behavioural shift towards daily violence and anger is a major challenge for them as well, and it doesn't always run like a well-oiled machine.

good news, glad to see people prepared to put the work in - no sarcasm, altho imo every child has an absolute inalienable right to have the work put in

I could be uncharitable and say the school have not dealt with the situation well + shit it about losing funding, but I'm quite humbled when someone is willing to put that type of personal 1to1 effort in. But yeah, I get ya.

https://www.vox.com/science-and-health/2017/5/11/15508006/what-causes-autism-spectrum-disorder-vaccine-theory

the url is misleading, this is a good piece

The idea of some people being more genetically disposed to external/environmental factors that may cause mutations linked to autism sounds plausible, not that I know shit. Definitely wouldn't have clicked on that url anywhere else but here!

I have just had my own kind of autism moment this week when I couldn't realise why someone who is very jovial and talkative with most people at the school keeps looking at me like he wants to drop me. It didn't occur to me that getting a taxi to park in a no-parking zone before the electronic gates to avoid all the transport chaos within the small car-park would absolutely enrage someone whose job it is to stop this kind of shit happening :p