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Autism


Nick Soapdish

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53 minutes ago, hallicks said:

She found the blue blanket that we'd had over the seat cushions on the old sofa, which I'd forgotten about. (After all of 2 hours in between getting rid of the old one and the new one arriving). She brought it over to us so we laid it on the new one. After a bit of encouragement, she sat on my wife's lap on it for about 5 minutes. Then a bit later with a bit more encouragement, she sat on it. She's been fine since and is sitting next to me on it right now. Thanks @Devon Malcolm and @quote the raven for your words yesterday. It seems silly now but it was such a massive downer and I was worried about her.

Ahh, glad it worked out alright.

Even when they're older and you think you've experienced everything that you think might upset them, something else will come along, but I kinda love that challenge from time to time because it keeps me on my toes and it's always really satisfactory when you find a solution and discover a bit more about them. They're absolute treasures, the little sods. This little experience will have helped you in more ways than you probably realise right now.

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Well looks like I will lose my appeal for high rate mobility. Judge seems to think having to hold on to him at all times to stop him running away/ into roads etc is not extreme behaviour require physical restraint. 
 

They wanted to hear he punches bites and kicks that ends with being pinned on the floor.

 

 

Edited by quote the raven
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30 minutes ago, quote the raven said:

Well looks like I will lose my appeal for high rate mobility. Judge seems to think having to hold on to him at all times to stop him running away/ into roads etc is not extreme behaviour require physical restraint. 
 

The wanted to hear he punches bites and kicks that ends with being pinned on the floor.

 

 

So frustrating to hear that. I don't understand how that cant be

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Just now, Hannibal Scorch said:

So frustrating to hear that. I don't understand how that cant be

I did point out that I considered holding onto him when ever he leaves the house to be permanent restraint. And that I do it to stop him hurting himself or others.  I also pointed out that if I was to pin him on the floor that would be abuse.
 

The two people with the judge seem to accept it but the judge not so much.

 

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I think that the awards are done extremely arbitrarily. For instance, my son is autistic and has cerebral palsy - and he doesn't get the highest rate either. The judgement being that because he can walk unaided that he does not fall under needing mobility assistance despite the fact that he does need to be held on to most of the time in public. It's massively shit so I sympathise entirely.

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13 minutes ago, Devon Malcolm said:

I think that the awards are done extremely arbitrarily. For instance, my son is autistic and has cerebral palsy - and he doesn't get the highest rate either. The judgement being that because he can walk unaided that he does not fall under needing mobility assistance despite the fact that he does need to be held on to most of the time in public. It's massively shit so I sympathise entirely.

Thats fucking awful. 

 

By definition he failed on not having a severe mental impairment. Even when they have a letter saying  he is learning at the rate of a 2 year old.

UGH 

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After just over 3 years I've finally heard back from my local Autism service today. They gave me a call, outside of what I'd presume to be their normal hours, apologised for the wait, and said that they'd be writing to me as soon as they can with asn invitation to go and see them. I'm still not holding my breath thatit'll be anytime soon, but at least I know I'm going to get something. They're probably so overrun and underfunded, especially regarding adult diagnosis.

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My eldest is currently going through the process of a PANS/PANDAS diagnosis, to get there a number of other conditions need to be ruled out.

She was referred to the local paediatric unit for Autism tests, she clearly isn't and only gets her episodes around times of ill health, but it needs to be elimated for the process to continue. The local paediatric unit have come back and claimed she's too old to be tested by them and she has to go through CAMHS. My wife's pissed as she claims this could now take years rather the weeks we were originally looking at. Is this true?

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I feel like I'm slowly coming out of the end of a pretty big meltdown. Yesterday shopping with Mrs Jazzy I lost it at the checkout. No attention span, couldn't breathe, then I'd just go off into a daze and do a thousand yard stare, then my eyes couldn't focus properly. Managed to get home and I cleaned the kitchen without even realising it, did a pizza in the oven and literally just stared at the TV while it was on, played some Killer Instinct on XBox because I felt like mashing buttons was as involved in a videogame as I could get, but I needed to do something. I've shaved my beard and my hair this afternoon, and had a shower in the hope that I feel a bit better, and popped down the chemist's to collect Mrs Jazzy's latest prescription. I just still feel really restless. 

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Potty training 4 year old. She can control bladder and knows when she had a wet nappy. Hit the jackpot on day 1, she did a big wee in the loo before any accidents. Half an hour later, accident. It’s currently Toilet 1-9 Accidents. Also she won’t wear underpants and has a massive, massive meltdown when we suggest them/try putting them on her. We’ve got a social story, a sticker chart, we’re being encouraging, we’ve put up big teletubby stickers in there and she had the tubby phone for exclusive use whilst sitting on the toilet. Still, it feels like eternal hell and is just beyond depressing. Any suggestions? 

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Yesterday and today at work I was pretty much just told what needed doing that day and left to it as my shift leader was back in. I just go and potter about my day and try to get as much done as possible. Sometimes something else comes up so I try and get that done before I go back to my original stuff. My days are so much less hassle when there's an actual shift leader in. I managed to get the last of the returns returned to stock today ahead of a stocktake tomorrow and my new manager declared me his "fucking hero" as a result. The start of the week was shaky as I'd not had to properly lead a shift in probably over a year (last time was during the warehouse move, and was a disaster), but they got better as the week progressed. 

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I don’t have much to say right now, so not really sure why I’m posting, but this afternoon my youngest son (3 in July) was formally diagnosed as Autistic.

Its not a shock as such, suspected as much for about a year now - some things became quite apparent in the early months of the first lockdown, feel more numb than anything.  It feels like huge news and no news all at once because there’s no clear pathway from here, all very reactive, based on development etc which whilst obviously the right approach, doesn’t help us feel like we’re able to do anything in the meantime.

Speech and Language therapy awaits, but one of our biggest challenges is getting him to engage with us for long enough to cut through, so I’m less than optimistic.

Head is all over the place. It’s not worry, or panic or sadness necessarily, I just don’t know where to start in terms of being any use to him.

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