Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

Carrie no I don’t want to go in the taxi, I did my time for 3 days last week, (unpaid) as they let their staff take term time holidays and don’t have staff available as back up 🙄 I’m pretty sure ds has had every one of their PA’s though and they don’t want to do it, I’m not stupid. The driver see how I dealt with ds last week, incidentally we had no issues at all for those 3 days I was in the back with him! He said on the Friday his behaviour had been exemplary. And in the car it had been.

I told the driver loads about him, how to / how not to, we had 3 days of driving back home and back up there to chat about everything, and his PA has been his PA since January and I’ve spoken to her countless times already this year.

Monday PA came back, got ds in the car in the morning, she said to me ‘driver said ds was fine last week, I’ve warned him he’s not often like that’ and sure as anything he wasn’t fine. I think they just assume he behaves better for his mum, but that’s not the case, he can be a total shit bag for me (a lot of the time) and doesn’t listen. So he wasn’t just good because ‘mum’ was in the car, which is what they are thinking. They know he’s not good for me, if he’s riled up when he gets home he will kick and spit at me on the front before I’ve even got him through the door in full view of them.

I’m just really done with the taxi company now, it’s been 2 years of issues, I’ve had to take him myself quite a few times now due to issues with the driver or PA. They came late on quite a few occasions and ds has been late to school, they can’t arrange cover, all the changing of PA’s every few months isn’t good for him, and before long I’ll be asking the council to change, but then I imagine the next company will be like it and the next after that, they just don’t have enough disability awareness nor training or they expect every child with a disability to be the same, and I think that’s universal between all companies.

I’ve never met a happy taxi driver. I think of a taxi driver and the first thought that pops into my head is a miserable old bastard. They are Renowned for it. Which literally describes this new one down to a T. He’s so old school, telling me he stopped the car once and told a disabled teenager to get out and walk, or him and his old PA would have a bet each morning what mood the child would come out of the house in and whoever was wrong would buy the coffees on the way back. 😳

I’ll leave them to keep mismanaging him and him terrorising them, I’m past it all now. You can’t help some people. If they refuse to take him, the council have a duty to arrange alternative arrangements so it’s down to them. Not me. I can’t take him that far every day anyway, because as you all know I work full time. Lol.

Carrie ds is a bit similar in that way, he’s REALLY bright in some areas, but has a lot of more severe autism behaviours, that his school say are what they would associate with other children they have in the school of a lower academic ability, ds last week taught his flaming teachers about space. It’s insulting! 🤣 they were doing planets, the standard earth, mars, Jupiter, ds knows the ins and outs of everything space related, freakishly so. They then tried to teach him Earth, mars, jupiter 😭

He knows about Stephenson 2-18, Olympus mons, Ton 18, how many moons each individual planet has, how long each planet takes to orbit, and stuff like that, so not basic stuff at all, His knowledge has no limits, and he knows far more than most adults. He’s learnt it all from reading his books i buy him and watching his videos. He’s really interested in space and he needs credit for how clever he is with that topic. It amazes me. I said to dh he’s like a young version of Elon musk. I just hope he pays me back out of his billions when he’s older for all the shit he caused me growing up 🤣🤣

I have to Google what he’s talking about half the time and I would say I’m quite switched on. He will tell you the exact date a planet was discovered and why it was given the name etc.

His female teacher commented on it and said his knowledge is unbelievable and the male teacher had been corrected several times with the wrong answer he’d given ds. My 9 year old is basically schooling his teachers.

Yet he’ll smear shit in the classroom, shove things in his mouth, totally incapable of following rules of any kind, doesn’t understand danger and has to have somebody by his side at school (and home) all the time to keep everyone safe.

I find it SO mind boggling.

@ElizabethBennetsBoots they do say that he is better regulated now and more communicative etc, just no where near what they need him to be for him to progress and learn. Their answer is an OT review and more OT. Oh they mentioned hippotherapy. As a new tac. Anyone tried it??

Carrie what I’m trying to say is, I think quite big spikes in ability is fairly normal,

it’s what I’m used to with ds anyway, he’s always been like that.

Like that with space v still putting things in his mouth like a toddler or that with space v still drawing on furniture / my walls (he still has a lot of toddler type behaviours)

My nephew is 2 and ds is still doing things my nephew is doing.

Just ignore your ds school, I think they are all disregulated to a degree, some more than others. Some kids are just not calm kids.

Let’s be honest if they were all regulated calm and ready for learning they’d be in a mainstream school?

Interesting discussions. I don’t think very spiky profiles are that uncommon but I don’t know what the typical schooling is for kids that are like this. It’s called ‘twice exceptional’ or 2e isn’t it? Quite a big thing in the US at the moment. carrie is ds’ school in a large city or rural?

danni where to start on the taxi… incredibly inappropriate to tell ds they would take him to your dad’s and get his pocket money stopped. Completely unprofessional. Do you think your dad would tell them where to get off if they tried? Maybe have your dad at yours one day when they get back from school with him.

Ds has had an excellent start back to school. I’m trying to remain quietly optimistic and not get my hopes up too much at this point.

I need to go back and reread.

Ahna yes it’s called receptive language. I think it’s always good to presume competence though, ie presume she can understand when talking about her or to her, because as you said you don’t know for sure. Have they replaced the targets with new ones? Targets need to be achievable so it’s not necessarily a bad thing if they’re adjusted to something more suitable - better than having the same ones in unmet for years.

dimples sorry you seem to be fighting in all directions at the moment. I hope you get a break soon.

Open that's great news re return to school. What sort of hours is he doing now? I do feel like I am fighting on all fronts but the good thing is that DS and DD seem happy at the moment - which is normally my biggest worry.

DS went to cookery club after school. I was worried that it would be too much for him but he seemed v happy. He brought home a pasta dish that he and DD have just had for tea - result!

He’s been staying most of the morning, up to lunchtime some days. It’s better than we could have hoped, so far at least

Well done to your ds, no cooking which is a bonus for you. Ds avoids his cooking lesson like the plague.

@openupmyeagereyes great re return to school!

and yes, we do presume competence (so try not to talk about how difficult we are finding it etc in front of her) just in case.

@carriebradshawwithlessshoes yeah they do the shoes together etc but she has resisted for ages and tbh it’s a goal I’m not fussed by , some of the others more so but communication and self regulation the main ones. Unfortunately the SALT and the school disagree on the best approach (SALT still firmly believes in the ‘gestalt’ short sentences approach that DD can hopefully then break down. School sees single words as more logical in the same way you’d teach a baby. they are in contact w each other and the school already knows the SALT from other kids so figure they will come up w a plan).

hope everyone has a decent weekend. Some more summer ish weather here so will enjoy that whilst it stays. I’m terrible for feeling down when the nights close in.

Ahna sorry, I didn’t mean to sound condescending.

@openupmyeagereyes no you didn’t at all. You never do and always value your wisdom (and see you share it loads on the forums). Sorry I responded in a few bits as DD was all over the place, so it probably read weird.

No apology necessary Ahna I know you have your hands full.

Wishing everyone a peaceful night. Ds slept until 5:30 today, if he could do that every day It would be great!

How is everyone? DS had a tricky day and explosive evening yesterday. His year went on their residential this morning and yesterday his classmates were a ball of nervous energy and excitement. I think I wrote before how school said that he could only go if I stayed locally and collected him at bedtime and in the end I decided due to the cost, my job and DD that wasn't viable. I feel bad now even though I think that I made the right call. I just wish that DS was in special school and was not being excluded from his classmates activities. That said I really don't think he would have enjoyed the Lake District in the pouring rain. I took him in late to school today to avoid seeing his classmates departure. I can't decide whether I should take him out tomorrow or Thursday but it's a bit tricky with work. My Mum had offered to help but she and my sister's kids are unwell. I guess I will just see how he is after school. It's freshers week next week and I am a yr1 tutor so it's all rather hectic getting ready to welcome our new students.

Got my appeal in at the weekend so that's one job ticked off

dimples i can understand your guilt, but I would have done exactly the same.

You make the best decisions for a reason, it’s not like you wouldn’t have sat and balanced all the pros and cons up so trust your judgement, don’t beat yourself up. I would never let ds on a residential for the reasons you listed, he couldn’t be trusted, but I too would still feel like shit. I think that’s natural x

Ds wanted to join a football class (he see it on a field on the way to the park one time) I knew it wasn’t a sensible decision, he can’t kick a ball for a start, doesn’t follow rules, he picks a football up and runs off with it in his hands when given the chance if he sees anyone playing with a ball at the park etc, and these sort of classes aren’t SN friendly, so I said no. I felt awful afterwards thinking poor kid.

Same when he wanted a birthday party at the local soft play, we have no one to invite, if i invited the few kids in his class (the school is 40 minutes away) chances are no one would turn up and it would cost me a fortune for nothing. So again I had to say no, I also felt like shit then. He’s never had a birthday party and I always feel bad about that, but honestly I know it’s the right choice, he’d be more heartbroken no one turning up and then I would be heartbroken for him too. I try do other nice things on his birthday but feel pissed off he can’t have a normal thing like a normal kid.

Thanks Danni these things are tough. I don't think DS gets at all why he can't go. I am worried that he has now decided it's because he is 'bad'. He asked me on the way to school if he is on Santa's naughty list. I have always told him that there are no good and naughty lists and that he is not naughty - I went a bit further today and told him that the whole list thing was invented by adults to try to control children! Do your children still believe? My sister decided to break it to her 11 year old autistic twins over the Summer - she thought that they already knew but they were heart broken

Apologies for the Christmas discussion in September! My other sister bought us a 100 day countdown to Christmas calendar. DD was dancing around earlier after turning to 97 days shouting 'it's nearly Christmas'. I feel like mislaying this gift

That’s really hard dimples but I’m sure you’ve made the best decision for your ds. What are they proposing to do with him while the rest of the class are away?

Things aren’t great here today. Ds had an aggressive tantrum on Sunday and has had another today, both about something he wants. Trying to keep both him and us safe is quite difficult when he gets like this. I’m feeling pretty sad and emotional right now as he seemed to have made some progress in this area. Possibly it’s connected to the return to school but who really knows.

Sorry to hear that Open. DS has been very aggressive the last couple of days. It wasn't a good day at school today. At home time his TA was v shocked to see him hitting DD - a daily event at home but she said that he is always v kind to her at school. This is typical of him. Open it sounded from your description that your DS's aggression is a bit like mine in that he doesn't seem totally dysregulated, it's more that things are not going the way he wants, eg he trips and thumps DD, he asks me for something and I say no, he slaps me. I have signed up for a CAMHS training session in December about Child to Parent Violence and Aggression- living the dream! If I learn anything useful I will share. Fingers crossed it's a brief blip Open.

Absolutely dimples. He does get dysregulated but if he was given what he wanted it would stop the behaviour. He doesn’t just hit once, he keeps going for 10/20/50 minutes depending. Today he was trying to bite me. I couldn’t leave him alone as he was also threatening to try and leave via the window.

Oddly enough we’ve been invited on a non-violent resistance course run by CAMHS but this is 11 weeks long. I really hope it will help matters.

Hope that course helps Open. DS tends to hit me once/twice then resorts to screaming. I think that he would keep hitting DD but I pull him off her.

I wouldn't have trusted DS' old mainstream school and one of the great things about th3 special school is that he's usually able to go on things, but I'm still not sure about a residential trip! DS has been quite heightened after school today too, I think it's usually around week three of term that all the demands catch up with him a bit. Onwards, four weeks left after this one until half term!!
We are doing a Halloween countdown first and then will begin the Xmas one although DS has started his Xmas list. He's asking some very tricky questions about santa these days but still believes, I don't want to break it to him as he'll call us all liars etc.
Dreading it!
Work is v busy here too although still going well.

@openupmyeagereyes I’m so sorry you’re experiencing that, hopefully it is linked to the return to school and something that will settle down. No advice but just sympathy. It’s so hard to deal with isn’t it?

@dimples76 It’s so sad he thinks it’s down to him being naughty, it does make you wonder how MS schools and the world in general impacts on their self esteem. Is he at still going into school this week or staying home?

Possibly going to massively out myself but DS came home with an injury yesterday. No one can account for it. I sent a probably less than polite email to the SENCO as we aren’t getting any sort of handover from anyone. She’s come back with that the agency worker has left so DS is just having and old random person and they’re struggling to cope with him. I think we’re teetering on the edge of exclusion again, despite being told he was having good days and everything was fine until this morning. They’ve asked for a meeting so I’ve suggested today. Still no news on a specialist place.

I’m trying not to get upset and be full of doom and gloom. But I just can’t go back to how things were last year. I’m really enjoying being back at work, the other two are loving nursery, I’m not completely depressed and full of self loathing… DH is signed off with stress too at the moment which isn’t helping. I feel I need to try to maintain the calm ‘everything will be okay’ approach.

@Jaberwockky that's so tough, your poor DS. Did school even tell you that the main person had left?? If they can't keep him safe, that is great evidence for needing a special school, although it's hard at the time. I would preempt the exclusion (which puts the blame on your DS rather than their staffing levels and lack of expertise) and email about the injury, copy your caseworker in, then email caseworker separately saying how worried you are about this placement and try to call a review of ehcp.

@ElizabethBennetsBoots The frustrating thing is after his EHCP review in April-ish specialist was agreed to - it’s just proving an absolute mess to sort out. School haven’t said anything beyond ‘oh he’s had a good day XYZ at lunch did XZY’ it’s been very basic, and obviously a complete lie from what I’m now hearing that he’s having an utterly shit time. I’ve emailed his caseworker and forwarded her the email from the school, so hopefully she’ll get back to me.

See I don’t know where we stand with exclusion. I think with DS it’s more running off and not being able to engage him, rather than behaviour that’s endangering himself or others, though I guess disruption is enough of a reason to push exclusion (though who actually knows at this point!).

I’m half considering pushing for EOTAS, but it seems daft when he’s got a school place sorted for when we move next year. I’m so sorry that I can’t remember if anyone does EOTAS on here - but do you think the transition from that to then being in full time specialist school after say 8 months would be too disruptive? I’m just trying to work out what it would potentially look like for him.

Or we see if they can accommodate DS sooner and see if we could move sooner.

I would push to move him sooner if you can.