What can you tell me about Autism?

I confess that the bus is an absurdly high percentage of what I like about my son's school arrangement!

The school's a mile away and he typically has a 30-minute bus ride (a it's gathering special-needs kids from a wide area). That's a whole extra our per day in which I know he's safe, I know he's loved, but I don't have to deal with him. Also he can sleep on the bus, so he gets some much-needed extra rest.

I hear that YMP, and can remember being just as content as you are with the transport. But alas not any more, and in my case the school is 20 miles away, hence my reluctance to do a daily 40 mile round journey, twice a day. Because certain people have just gone on their holidays this summer, and not given a 2nd thought about their dysfunctional transport problems that need urgent attention.

I hope things work out for you, calzino.

I'm not sure if I am being stubborn and unreasonable here, but will stick to my guns on this for now. Lol! will probably get browbeaten by formidable Julie (who is the head of education/family liaison person) who is an expert at getting her way, and crushing all opposition, without even seeming like a bad person.

i don't think you're being even slightly unreasonable

I'm going to quote you! I'll say there is a x-person who works with ASC adults, who says I'm being completely reasonable here!

i'm not a lawyer calz but in very simple terms the question i think is: is his school experience/quality of life being adversely affected because of local authority failing to meet the needs of his disability? if the answer's even halfway yes then i believe you're in Equality Act territory.

of course the reality on the ground is tempered by bloody-minded cash-starved local authorities but in principle their financial situation has no legal bearing.

(if you wanted to get devious i wonder if you could argue that the bus ride itself has a therapeutic value, as YMP was saying upthread - it gives the lad a sense of structure and mentally prepares him for school, whereas you could say he finds it more of a wrench being in the car with you.)

sorry for rambling, guess who's started back at work this week

No that sounds a reasonable argument and I will use it, and as well as the sense of structure it develops his sense of independence, because god knows - he already spends too much time with his parents.

also an excellent argument - other kids his age can travel independently

I had a heated argument with a social worker today, and under the pressure of me being 100% no surrender on the transport issue. And the arrogant pricks in Transport just as implacable. And him in between us, he was getting desperate and made a very judgemental comment to which I retorted his professionalism was going to shit here, and I called him a smarmy little prick. Probably not the best response, but fuck the little pissant! As usual Judith from the school is a formidable manipulator and player and is always on my side. Oh she was in tears when she heard Andrea had taken an OD etc.. But she hasn't phoned me back tonight. I think I'm just going to withdraw him from the school again, and home educate him for his last year. Whole autism school my fucking rectum!

Judith phoned back in jubilant mood, and Alex shall have transport and an escort from next week. She actually thanked me for being so obstinate on this and i suspect she is settling scores with people from transport who are causing her much angst in her job, and it is going to get much harder for them to throw students off transport in the future. Sometimes you have to stick to your guns, even when arseholes are making judgemental comments and you start to doubt yourself. Sorry for dissing you on ILX last night, Judith!

excellent!

Great news

yay Judith!!

I needed to get a new Autumn/Winter coat today for the kid and S M L XL type sizes are so un-standardised and random in the cheap shit world of Direct SPorts, that they have to be tried on. And I knew that it would be problematic trying the first one on, but then having to try on a 2nd when that fucker didn't fit would be a veritable bloodbath! And it was!

I went to a coffee morning earlier where some T2 councillor dronesworthy type gave us all a questionnaire on which disabled services should be annihilated. It gives you a chance to rate services in terms of importance by ticking emoticon smileys or thumbs up/ thumbs down or shit like this: If the Access Fund paid no more than 15 hours support per week for vulnerable 2 year olds, would this be good, bad or make no difference to you?

This is just the pretext for some really shitty deep cuts coming that will wreck the lives of many, and then LA can say b-b-but we consulted you!

christ

we had an IEP meeting with the school system the other day. just some of the dumbest goals in the first draft. like our son "will learn to enter a play space three out of five times" um he is 5 and he knows how to enter a play space, thanks

he has literally been playing in your classroom for the entire last year

Sometimes they put utterly achievable goals are there so as to be able to demonstrate progress/success. But you as a parent can presumably tell them that this skill is mastered and they can take it out, yes?

yea that's what we did

There was a grandmother at the meeting who was explaining that she needs the transport that is provided because her teenage grandson had always been taken by her late husband and couldn't adjust to getting on the morning bus without him, without going into meltdown. And this was only a recent bereavement, so she breaking down in tears at this point. I was sat behind the councillor drone and seriously felt like garroting the bastard. Don't kill the messenger etc, but damn he was such an oily slimeball. And his haughty, arrogant manner really pissed me off.

Ask autistic kids the wrong question- not even autistic kids - "do you wanna be at this college?" - it's ridiculous. My spiel is usually "yeah I'd rather not be here either but the government says you have to be so is this as comfortable as you can be?"

Alex is getting his first respite from his shitty parents in 15 years on Thursday. I told my partner: imagine how much help I'd have got if you had actually succeeded in fucking topping yourself! JOKES OF COURSE.

I mentioned formidable Judith upthread. She did it again and took down a pompous doctor type tosser who refused to sign a prescription for over the counter painkillers. Alex severely self harms at times by banging his head on solid floors and walls. His paediatrician reckons he is suffering growing pains within his dome and his brain might be pushing on his skull. But that he needs some painkillers at times is not up for dispute, but the school won't administer anything unless it has a doctor's signature. The doctor was implacably arrogant until formidable Judith steamrolled the fucker into a tiny ball!

Today my son was punching me, scratching my face, trying to gouge my eyes out, he ripped my shirt and he grabbed my glasses and snapped them. This violent anger is a newish thing to him, it was a rough day. People with ASC can be the worst and best people in the world within the same hour sometimes.

(I know this was 3 years ago but still, I feel this point should be made)

"People with ASC" are all different so not all of them are going to resort to violence when they get angry. For people with autism like myself that implication is a huge generalisation and slightly unhelpful.

sorry no offence intended, but my sanity hanging on a very thin thread has been the default position for a long time now. And my son's particular spot on the autism spectrum involves daily episodes of quite extreme violence/self harm at times. To the point I have arsehole neighbours phoning the police/authorities, even though they know very well he has serious behavioural problems at the moment. Any sweeping generalisations were not intentional.

No offence taken and I understand. I think the main problem with ASC in society is that because there isn't much information in mainstream education surrounding the issues that people (not referring to yourself) make wide assumptions based on the little they hear about it when in reality it's such an enormous spectrum.

Alex turned 16 last week, so now begins the fun process of the PIP application. I need to concentrate on the task in front of me, rather than constantly poring over stories of ATOS badness. At the moment Alex is going through a very volatile phase where little things like the lighting being too bright or a stone in his shoe is enough to send him into a rage. From school we get about half head bump notices to his positive behaviour awards. Let's see if these fuckers can find some way of presenting him as an independent and secure young adult! I have the backing of a statement, he's qualified for CAHMS assistance in theory- but they haven't done anything yet, twice monthly respite stopovers. It would take a serious work of fiction to turn him down, but stuff happens. At this point I'm expecting they might try and put him on the lower rate and I'll have to appeal against that. No point getting stressed.

I understood about half of that

PIP = the Disability Living Allowance. I don't understand half of the shite I post tbf.

new* DLA

ATOS = satanic corporation with gov contract for Disability Assessments.

I'd give a more comprehensive explanation, but rushing out the door r/n for a bus ..

This PIP form is a lot of fun. I'm probably better off not adding "a lifelong developmental condition's Approximate start date is birth, you low-down disabled killing creeps".

they need the education

An updated EHC plan arrived yesterday which has the NAS run Robert Ogden School in Rotherham named on it as his 16-19 destination. I don't think the Local Authority will be able to stop this because they don't have anything in their area offering the same, and the next closest college is in Oldham. Way to go Kirklees, you're doing a stunning job of providing education to young adults with autism.

I'm also going to have to fire off an angry email today re: the local swimming baths timetable. Now the only window of opportunity for disabled people to access the pool is 5.30 7.30 on a Sunday while this noisy "Wipeout" nonsense with floating bouncy castles is now 6 days a week. It's fucking infuriating is the contempt they have for disabled people, and local services aren't supposed to be dictated by the bottom line.

Is the Rotherham plan good news or bad news, Calz? Sounds like a good place but far away from home? How would the travel work?

He'd get transport to and from school directly from home and it's roughly an hour's journey on a good day, which isn't totally ideal, but the best available option. It is an excellent school and some of the teachers are quite highfalutin figures in autism studies. The school in Oldham is also excellent but the transport would take about an hour and 20 mins which is even less ideal. It is good news because the last time we tried to get him into that school, it went to an educational tribunal and we lost. His current school has improved a lot since then but sadly doesn't cater for 16-19's who are on the non-verbal area of the autism spectrum. Which is something that will cost the LA a fortune in transport and fees (Robert Odgen is a private school) until they get their act together.

His current school was transitioning from a non-specific special school to a whole-autism one, so as improved as it is now - it was abysmal about 4-5 years ago.

Once the school is named on the completed EHCP they're legally obliged to comply so well done.

Overall I will allow myself to be pleased about this development in that case! Hope he likes it there.

Thanks Tim. I think that makes it practically a done deal, but in the current funding crisis, I sometimes worry they might be fixing to wriggle out of it, but I don't think they can really.

Not saying they mightn't try, I've seen that happen plenty, but it sounds like they can't meet his needs in county and therefore ultimately they'll have no choice if challenged.

You may have to make a contribution to the transport costs?

I don't think so. The transport is also covered by his EHCP, which came in very handy when they tried to ban him from it. I heard it suggested at a meeting if people could make voluntary contributions to help them out, but nothing more than that has been suggested to me.

it varies from authority to authority. at the moment in Hull and in the East Riding families have to pay £300 a year last i checked. i'm not sure how the EHCP would factor into that but if they haven't said anything then you're probably right.

Is it that charge a recent development? It sounds fucked up to me, but obv in my Communist fantasia nothing gets paid for!

since my memory of recent history is terrible i can't be accurate but i think it goes back 2 or 3 years.

i'm trying to think and i have to say the majority of EHCPs i come across don't specify transport as a requirement, even when the student is in fact using local authority transport. that's contracted out round here tho, the councils pay local taxi companies, some of which are great, others not so much. i definitely advise every parent/carer to try and get anything they even think they might need down in writing in the EHCP - they are binding, even when authorities do everything they can to bend or ignore them.