What can you tell me about Autism?

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The problem with the watch/bracelet type devices is that ASD people often have an aversion to wearing things. PocketFinder looks quite good but rather expensive, although it does looks rugged and fit for purpose. I am going to read up on some of cheaper devices first, see how reliable they are.

Glad to read that the kid from Hounslow has been found free from harm in Westminster this morning.

calzino, Monday, 15 February 2016 14:25 (eight years ago) link

i think the best bet would be something somehow stitched into favourite items of clothing but i don't know how big the tracker needs to be, assuming real life is not the same as James Bond

one guy i knew used to wear a jumpsuit with parents' phone number very visible on the back

Chikan wa akan de. Zettai akan de. (Noodle Vague), Monday, 15 February 2016 14:52 (eight years ago) link

Yeah labels with contact details are always a good idea and so are jumpsuits! Most of the GPS devices seem to be pocket sized but they do require charging. It seems some of the cheaper ones require a sim-card and send back their current location when you phone them and some require you to pay an annual subscription for online services. Some of these devices have Voice surveillance built in, that seems a bit creepy and indecent tbh - especially when it is a concealed device.

calzino, Monday, 15 February 2016 15:58 (eight years ago) link

one month passes...

I heard some self-congratulatory beeb cack about The A Word on R4 today. Not watched it (and don't intend to either) and just expect it to be The Archers with some added hand wringing about cute-non-verbal-boy, boo-hoo, type trite shit like you expect the BBC to produce ad nauseam. I am not expecting them to portray the diversity of people on the autism spectrum, like young adults, middle aged people or women, or perhaps people not from model middle class families. Or even the diversity of the autism spectrum. No, not the fucking BBC, they are obv going to go down the standard cute m/c boy trope and then pat themselves on the back for being myopic, mediocre, condescending twats afterwards.

I know this lady who works in the local Asda who has two children with autism. One of them has ADHD running with it, one of them has a form of Tourette's running with it and her husband also has a diagnosis of Tourette's Syndrome. She always says she only works there for some time out, but she says it without a trace of self pity but I can see in her eyes, a kind of jadedness/ennui that I understand.

One of the bits I caught from R4 today was that the Eccleston character in The A Word says something cringeworthy like "The boy is broken, we need to fix him". GTf back into yr Tardis, you fucking hack eejit!

Sorry, I have had a few beers and have been arguing with my partner about this shite and needed to vent.

calzino, Tuesday, 29 March 2016 19:36 (eight years ago) link

sure thing!

marcos, Tuesday, 29 March 2016 19:49 (eight years ago) link

i am feeling overwhelmed right now. we are considering a move to be closer to my family but the area where we might relocate seems to have a somewhat substantially lower level of services available than where we are now. my son is in a good place where we live, the inclusion school where he's at is pretty amazing, somehow, especially for a school in a huge urban public school system, and we have a lot of private therapists and groups w/ whom we've built good relationships, we feel pretty established w/ his services right now, so we don't want to leave that, but we are also faced w/ a fucking insane cost of living here which is not sustainable for us in the long term. we are looking into the services available in the city we might move to and they are just not at the level we'd want even if it is way cheaper to live there.

also we just got back from a family trip and my son, who is pretty high-functioning especially when well-rested & well-fed, was just totally overstimulated by all the new people & places, he had a great time but there way more challenging moments & tantrums then we're used to, he pretty much didn't want to be around me in any way and that was super hard

marcos, Tuesday, 29 March 2016 19:55 (eight years ago) link

marcos i'm sorry, that must feel awful when your kid willfully blanks you out, you're right tho about overstimulation being the big distractor.

if you're in the uk please ilxmail me, i've got a few organizations i could suggest that are v. helpful. if you're not here then go ahead and chat anyway, on this thread or privately, there are definitely enough posters here with experience and knowledge who have important stuff to stay

disco Polo (Noodle Vague), Tuesday, 29 March 2016 20:16 (eight years ago) link

xp
Yeah, I know where you are coming from and whenever you feel like your inner psyche has become sufficiently calloused up to deal with various difficult behaviours, they have this tendency to take you out of your comfort zone!

The first time my son started getting violent was bleakly depressing, but now I can deal with it a lot better than I did a few years ago. There never seems to be many comfort zones between these increments of getting used to stuff, but that seems to be the case with many things in life.

Good support vs sustainable cost of living is a real difficult one, GL with it.

calzino, Tuesday, 29 March 2016 20:39 (eight years ago) link

yowza, marcos - sorry you're going through that. Sympathies.

I've done some of the same math in my head - lower cost-of-living, but fewer services provided - so I empathize with you. Hard decisions all around.

For us, I know we're paying a lot to live where we do (CoL, taxes, etc.), but we simultaneously feel fortunate that so much care is provided as a matter of course. Some time ago I had a little a-ha moment of connecting all these "free" services to the exorbitant tax bill and cost of living, but I know it isn't as simple a tradeoff for everyone.

scott beowulf (Ye Mad Puffin), Tuesday, 29 March 2016 23:42 (eight years ago) link

thanks everyone, it is nice to be back home at least, seems like me & my son have a completely different relationship when we are back into our normal routine, he is happy to see me again. the trip was also just completely exhausting for both of us so that exacerbated things -- when i'm not my best and he is not his best, things deteriorate quickly. when i'm exhausted i tend to get really impatient and attempt to take a "harder line" approach which is ... not at all what my son needs. now back home into our routine i'm much more aware of how much patience he requires of me and i feel like i can be a helpful & supportive father again

NV i am us-based but i appreciate the offer of support very much!

good news too is that my wife found what seems like a really good agency in the prospective city, so that's exciting

we're also aware that if we move we might have to fight a little to get the services specified in our IEP, here in boston it has been a breeze so we haven't had to fight at all. we're a little nervous about that possibility, my wife is an amazing advocate and i know we can do it but i also want to avoid going into "battle mode" and making things worse

marcos, Wednesday, 30 March 2016 14:45 (eight years ago) link

Good to hear things are more positive today, Marcos.

I bumped into this 36 year old man with autism today at the swimming baths, wonderful guy who likes to shake both your left and right hand. As was his support worker who has been working with him for 14 years. It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day. When you feel like you are on your own you can sometimes become vulnerable to other peoples hostility and shittiness. Sometimes just a simple chat can be good therapy.

calzino, Wednesday, 30 March 2016 15:09 (eight years ago) link

Some depressing bullet points from the latest NAS survey. I am quite a bloody minded, stubborn type - so when people are arseholes towards Alex I get in their faces and let them know how wrong they are and it even makes me even more determined to take him to his favourite cafes, swimming pools etc, not that it isn't completely depressing but I do have the armoury to deal with it. When ASC people + carers are becoming socially isolated because of arsehole behaviour then attitudes need to change and perps need to feel the full weight of anti disability discrimination laws or something.

In a separate study: "Researchers from Newcastle University said the age of diagnosis has not decreased in a decade - still averaging four-and-a-half years. Jon Spiers, chief executive of Autistica, the autism research charity that funded the study said ways to speed up diagnosis were needed, especially for "those left isolated for too long, such as girls with autism".

*79% of autistic people and 70% of family members feel socially isolated
*84% of autistic people said people judge them as strange
*50% of autistic people and family members said they are so worried about how people will react to their autism that they "sometimes or often" don't go out
*74% of family members said people tut or make disapproving noises about behaviour associated with their child's autism

calzino, Friday, 1 April 2016 18:18 (eight years ago) link

It is always refreshing to talk to people who actually understand autism, sort of gives me a positive lift for the day.

completely, i am so grateful for these people, friends of ours who get it and know how to communicate w/ J are so important to us

marcos, Friday, 1 April 2016 18:39 (eight years ago) link

and connecting w/ other families w/ kids on the spectrum or who have related conditions has been immeasurably valuable

marcos, Friday, 1 April 2016 18:41 (eight years ago) link

one month passes...

I got an email from an autism support group about a local school having it's autism provision closed. Then after a google I noticed that my LA has been closing all the autism provisions at all the mainstream junior + high schools, including the one Alex attended for 2 years. Fucking cuts.

calzino, Tuesday, 17 May 2016 11:39 (eight years ago) link

We just donated a zorb (huge fucking inflatable ball that you wear) to the school for some sensory fun, because it wasn't practical in our garden or without a car + portable pump. I was loading it onto the school transport + this kid at the front who is never short of something to say says "You are giving it to the fucking school? Why didn't you give it to me?". You had to be there obv

calzino, Thursday, 19 May 2016 20:19 (seven years ago) link

two weeks pass...

Alex was supposed to be getting his booster immunisation jabs, it is not happening because he starts kicking and throwing punches when he sees needles and he is very switched on to any types of kidology or "surprise attacks". I explained to the school that the only successful invasive treatment was when he was put under gas for dental treatment. But they sent me to a health centre to try again and the only way I could restrain him adequately for two injections would bruise him or he could get sufficiently upset to trigger off an epileptic fit. And it was the exact same nurse who had failed to inject him at the school. Just a complete waste of fucking time, again.

calzino, Tuesday, 7 June 2016 21:54 (seven years ago) link

surprised nobody has come up with another way of administering meds for situations like this

The Brexit Club (Noodle Vague), Tuesday, 7 June 2016 21:56 (seven years ago) link

i'm so sorry calzino, those situations freak me out and they are super hard

marcos, Tuesday, 7 June 2016 22:02 (seven years ago) link

miraculously we had a dentist trip that worked out very well, amazing senstive dentist who works w/ all kinds of kids every day so he had some idea of what to expect. it was basically just a cleaning though and i have no clue (other than gas) how J would make it through a cavity filling

marcos, Tuesday, 7 June 2016 22:03 (seven years ago) link

That was exactly what I was thinking. The nurse told me to talk to the GP who was a total supercilious arsehole with a withering "what's this got to do with me attitude" so trying the paediatrician next, he is a good guy and has so far been pretty solid.

calzino, Tuesday, 7 June 2016 22:04 (seven years ago) link

xp

calzino, Tuesday, 7 June 2016 22:04 (seven years ago) link

obviously any google search for autism and injections is doomed to founder in a sea of idiocy

The Brexit Club (Noodle Vague), Tuesday, 7 June 2016 22:05 (seven years ago) link

Gas is a good solution because of it's rapid speed but I don't know if there is some issue of mixing it with immunisation jabs, but it is the only solution I can think of.

lol yeah! we were joking that Alex is going through an anti-vaccine period!

calzino, Tuesday, 7 June 2016 22:10 (seven years ago) link

haha

marcos, Tuesday, 7 June 2016 22:11 (seven years ago) link

i think it's more that the risk with gas makes people reluctant to use it unless there's a "serious" need? they don't seem to routinely offer it to kids at the dentist any more like they used to

The Brexit Club (Noodle Vague), Tuesday, 7 June 2016 22:12 (seven years ago) link

Alex got gas about 7 years ago to remove a first tooth he had damaged by constantly tapping it with stuff. There literally is no other way he could have had dental treatment without it. I will sign a waiver for gas any time, the chances of it killing him are absolutely minuscule.

calzino, Tuesday, 7 June 2016 22:32 (seven years ago) link

absolutely! just saying it seems to be shied away from by medical people nowadays.

wonder why you can't take everything on a sugar cube like in ye olden days?

The Brexit Club (Noodle Vague), Tuesday, 7 June 2016 22:36 (seven years ago) link

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!

calzino, Tuesday, 7 June 2016 22:59 (seven years ago) link

*put it

calzino, Tuesday, 7 June 2016 23:00 (seven years ago) link

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.

calzino, Saturday, 11 June 2016 22:30 (seven years ago) link

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.

too much blood in my alcoholstream (Ye Mad Puffin), Saturday, 11 June 2016 22:49 (seven years ago) link

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!

calzino, Saturday, 11 June 2016 23:12 (seven years ago) link

two weeks pass...

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.

calzino, Monday, 27 June 2016 10:47 (seven years ago) link

one month passes...

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.

calzino, Sunday, 31 July 2016 21:36 (seven years ago) link

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

The bald Phil Collins impersonator cash grab (Joan Crawford Loves Chachi), Monday, 1 August 2016 00:58 (seven years ago) link

same, that is beautiful.

estela, Monday, 1 August 2016 03:57 (seven years ago) link

thanks people :)

calzino, Monday, 1 August 2016 05:58 (seven years ago) link

:D

oh Shi (Noodle Vague), Monday, 1 August 2016 07:53 (seven years ago) link

Fantastic :)

Le Bateau Ivre, Monday, 1 August 2016 11:24 (seven years ago) link

five months pass...

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.

calzino, Tuesday, 17 January 2017 01:29 (seven years ago) link

holy shit

illbient microtonal poetry Surbiton (imago), Tuesday, 17 January 2017 01:42 (seven years ago) link

do they let just anyone be a classroom assistant

illbient microtonal poetry Surbiton (imago), Tuesday, 17 January 2017 01:47 (seven years ago) link

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 :(

calzino, Tuesday, 17 January 2017 02:15 (seven years ago) link

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)?

a little too mature to be cute (Aimless), Tuesday, 17 January 2017 02:23 (seven years ago) link

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.

calzino, Tuesday, 17 January 2017 02:34 (seven years ago) link

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

a little too mature to be cute (Aimless), Tuesday, 17 January 2017 02:36 (seven years ago) link

thanks for your kind words anyway, Aimless

calzino, Tuesday, 17 January 2017 02:51 (seven years ago) link

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

illbient microtonal poetry Surbiton (imago), Tuesday, 17 January 2017 02:56 (seven years ago) link


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