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

Open do you still have to stay with him?

Yes I agree to the world being a shit show.

Cost of living is beyond a joke now too. I put £65 in my diesel on Sunday afternoon, it’s Wednesday and I’m nearly out. I know I’ve been taking ds this week, but other than that I’ve only been to town once and Tesco, and that’s my fuel needing topping up again in the morning and that will get swallowed taking ds tomorrow and Friday.

Food, every time I go to the supermarket it’s darer than the week before.

Its all too much.

It occurred to me yesterday that I either say nothing or write an essay on here! This is going to be the latter….I am reading though.

House works… urgh. We live in a too small house in a very nice area so have toyed with moving more rural where we could get a lot more for our money but the housing market is just flat atm. So we are trying to do up/ extend with a view to ‘love it or leave it’ but the process is so hard work I feel we have to stay! Maybe it’s me but I hate chaos/ disorganisation, it really stresses me out. I’m a bit anal at work, I can’t live or work like that. So at some point we will have to move out and rent for a bit but equally we are so cramped here we had no choice really.

danni, I nearly threw aside the boxes to reply to you, what a nightmare!!! Tho great it’s resolved with the mini bus. I hope that goes ok. DS is def travelling in style 🤣.

dimples hope you are feeling better soon.

im impressed with the new jobs (Ahna and Liv!). If I didn’t have the one I have I don’t think I’d get one at all, I plod along but my appetite for job change/ better pay/ better job dissipated with DS, it’s totally off radar which is a poor view really when we all spend so much time at work. Maybe one day.

Open, great re school hours. Hope it keeps up!

Generally mixed here. Since DS went back to school to my mind he’s been great. Happy and regulated, fine before and after school, weekends etc and so on. Getting the bus nicely. No screaming/ squealing thank the holy lord. So for him, pretty good. However we then had the delights of parents eve (and yes in response to this topic I absolutely make DH go. DD I couldn’t care less, I go myself and listen to how wonderful she is whilst mentally planning what’s for dinner but for him it’s like such a mental feat I’m bloody not doing it on my own.)

it’s the usual stuff from them. I think in essence he doesn’t enjoy learning, or not learning what they are teaching iyswim. So they go through whatever they are doing (which he’s not v interested in) and ask him stuff and she said she knows he knows and often will start the work correctly but then just gets fed up and either just doesn’t pay attention so gets it wrong or just won’t engage. You may remember last year they claimed he was engaging but this is just typical of school reports for DS, completely inconsistent.

it was hilarious though as we walked out and on exit I said to Dh ‘well that was shit wasn’t it.’ I thought the teacher had gone but she was actually right behind me so no doubt heard. I don’t particularly feel bothered though.

the problem with DS in life, with toys, with learning is that whilst he can do stuff and sometimes do stuff v well (like numbers) when pressed he just has so little interest and so there is no motivation there to perform. He likes ‘life.’ He likes being with us, playing in the park, going out etc. that gives him pleasure, a lot of physical/ sensory pleasure with activities, or social pleasure if it’s a family thing. But beyond that in school it’s not stuff that interests him unless it’s sensory based. So he won’t engage. I’m not sure how anyone moves on from that really.

I then felt quite upset at the end and am interested to know views. As said before, I hope for lots of things with DS, we all do, don’t we? Whether they come to fruition time will tell but I do hope for them. Anyway I made a comment about DH and I going out (as in away from DS) and very flippantly said about he is fine with family but they are all getting older. One member of staff then launches into great detail of ‘in the future’ getting payments so someone can take him out into the community and DH and I can have some time. I don’t know if I’m being over sensitive but I just felt so upset, like ‘in the future’ am I off my head to hope that he can be left on his own or is this really their prophesy for him?? Obv by future I don’t mean next week or next year but they just made his future sound so dismal (unless I’m over reacting in which case tell me.) I could feel myself starting to get really upset so legged it and that rounded things off wonderfully….

@carriebradshawwithlessshoes works always such an upheaval, moving too. Hope you can relax for a bit in that respect whilst you figure out next steps for the best move.

re the future hopes, I think it’s important to have those hopes / expectations, think it’s all part of the ‘presume competence’ type thinking? To be honest I struggle with being the other way - thinking the worst case scenarios for future, and I need to reset that. what did DH think? Sometimes when myself and DH are at an apppintment about DD I feel like we have had two totally different experiences - he finds it all fine and positive and I’m more like you yesterday, as in wow that was shit. It can be frustrating !

we had a catch up w DD’s SALT. I feel like any expectations for verbal communication any time soon seem to have gone on hold, which I kinda understand and agree with, and now we are trying to do more with pictos (in a small steps, manageable way that is realistic for the family life and busyness of every day). But the SALT started on about are we getting enough support, respite care options etc - I mean she’s fairly well plugged into the SEN ‘scene’ /
offerings around here so I guess it came from that experience, but I felt a bit like, can you not focus on getting our DD to communicate ! Maybe I am BU there.

ive noticed lately that DD is interested in the form of words. Like prefers nursery rhymes with subtitles and looks over the text of books for ages. She’s always been like that with numbers but I wonder if she’s trying to learn words a bit - I know you hear about that sometimes, kids who can read before talk. I figured maybe should
try and give her more opportunities for that, beyond subtitled things I don’t have any ideas. Is this something anyone else recognises?

carrie the implication was that he’s going to need adult support ‘in the future’ wasn’t it. Rather a pointless comment when he’s only 8yo. Maybe he will, maybe he won’t, it’s far too early to say isn’t it. I don’t think you are unreasonable for having expectations for the future.

With my ds I’d hope but really have no idea. I worry that if his temper doesn’t improve he’ll need adult support just to avoid being imprisoned! But this is just catastrophising because he is better than he was even though we still sometimes have incidents. Hopefully he’ll get there with time and support.

To prevent spiralling I think a good approach is to take it a year at a time - where are they now, what are the next things I can teach them to move them forward, that sort of thing. Otherwise we can end up just sleepwalking through it rather than being productive.

Ahna definitely support this interest. Plenty of non-speaking children and adults can read and write. Buy books, maybe one of those Leapfrog things might be a good idea as it speaks aloud and she can use it independently. You can buy loads of stuff for them I think?

Agreed Open re the implication but why do people say these things then? Do you think they really know? They say them so casually too. I actually feel like I’ve been physically punched when they do. It’s as bad to me as, I don’t know, having some illness and going to the dr where there is treatment and the dr just wanting to talk about funeral planning. Yeah that may be the worst case scenario but can’t they just focus on treatment and the treatment working (to be clear I’m not obv talking about this as a disability needing treatment I’m just using a ‘let’s talk worst case scenario’ analogy.) maybe when I’m on my deathbed talk to me about funeral planning but not til then. it just makes me think do they know something, are they thinking what a deluded parent, we need to burst her bubble for her own sake? Are they seeing DS as something different to what I do? They see hundreds of DC whereas I see DS, so is their view better than mine?

unfortunately Ahna DH wasn’t at this very last bit of the meeting. I 100pc agree with what you say tho re the words, ds can read v well.

carrie I think they believe they’re being helpful and not setting unrealistic expectations. Even if their experience is such that (completely made up) 90% of dc who are non-speaking and have attention issues at 8, let’s say, end up needing assisted living as adults, there are still the 10% of outliers. What happened with them? What was the difference for them? We know that plenty of children and adults alike are given grim prognoses by professionals that turned out to be nonsense.

Personally I like to tell myself that, ok ds may not be ready to go off to uni and leave home at 18. Maybe his education takes longer, maybe he stays with us longer but that’s ok. Getting there later is still getting there.

Absolutely it is Open and we are not running a race are we. DS is just so tiny/ young still in every way. I find it extremely ironic that the people who are there to ‘help’ actually end up making me feel a million times worse, surely that can’t be right.

anyway I’ll end my rant and hope everyone is doing ok.

carrie your identical to me, don’t post for ages then all your thoughts go down at once. 🤣

I know what you mean with the way / and what you write though. I also feel similar with how negative professionals are with projected outcomes, but I totally understand what open said, ds is going to need tons of adult support when he’s older, just to stop him being given a life sentence I suspect.

I naively thought disabled people didn’t get the brunt of the law like we would, I mean how could you pass a sentence on to somebody who doesn’t fully understand implications? But seems they do, I have read some things recently that backs that up. They take it into account, but it doesn’t fully absolve them.

Not that I’m wanting ds to get away with everything in life, but it’s quite different when they have challenging behaviour from being toddlers and grow into adults like it despite best efforts in teaching them what’s right and wrong, this is perhaps why they are the type who live in accommodation and have carers assisting in the community to prevent situations like that. (My aunty does this job and her clients / patients whatever they are called, are in there 30’s and have to have adult support for theirs and others safety)

If look at ds over the past say 8 years, then how he still is now and he’s only got worse, and then forward think the next 8 years, I can’t see him being able to be left as an adult and that is totally depressing to think about. He’s going to be an adult and still needing supervising like a small child does.

I don’t genuinely leave him in a room on his own unless he’s asleep, that’s just because of ds personality and impulsive way’s unfortunately.

But they aren’t all like that, can you remember the 19 year old in ds last taxi? To me he was very disabled, but he was as good as gold, he was the opposite to ds, appeared more disabled with his speech and the way he appeared, but he’d been one weekend travel training with his foster family and caught the train on his own to a destination not too far, if I go by how ds is and think about that being ds then that train driver would of been tied up and ds would have single handidly derailed that train as soon as it departed the station.

I pray with all my life he doesn’t grow up how I think he will. And I do hope this thread continues for many more years yet so we can update each other! 🤣

Also carrie at ds school which I’ve seen regularly this week, at pick up most kids are bought out by a teacher, the younger ones maybe under 12/13 they are all assisted.

But the older ones, say 14/15/16 year olds, they get left at the gate and make their way over to who ever is collecting or make there way over to their buses on the car park by themselves. They don’t seem to have as much Velcro attached as the younger ones… just my observations and I have been observing a lot this week as I don’t often go to ds school.

But they are 14 years plus I would estimate, so generally speaking much older than what you have with ordinary kids,

especially if you think by year 6 (10/11 years?) most are walking to mainstream school alone at this point.

So I think with our kids, naturally things just come later.

I can see why that comment stung Carrie. I imagine it was just something said on the spur of the moment, thinking of your wellbeing after you had mentioned family support possibly reducing. And 'in the future' not necessarily meaning when he's a teenager/young adult.

I try not to look too far ahead, too depressing. Like Danni our lives have got harder of the years. Until DS was 6 although parenting DS involved a lot more work than for a NT child (and I can really see that now with DD) I didn't find his behaviour particularly challenging most of the time.

I really don't know if DS will ever be able to be left alone. Don't watch the Missing documentary on BBC - a lot of those cases involve people with learning disabilities wandering off.

DS did his best ever reading to me last night. I was really so happy. Don't know why I then checked reading age of book 6-6.5 - DS is 10.

Transitional EHCP review meeting is now 2 weeks away. Hoping that I can keep my cool with the case officer

*But they are 14 years plus I would estimate, so generally speaking much older than what you have with ordinary kids,

especially if you think by year 6 (10/11 years?) most are walking to mainstream school alone at this point.

So I think with our kids, naturally things just come later.*

I find that quite reassuring danni.

Great with the reading dimples. The most important thing is that he’s making progress.

And if it’s any more reassuring to people my NT DD at 11 isn’t walking anywhere much on her own at all and I’d only leave her at home on her own for very short periods.

There was a lovely post on here and I can’t find it now of a poster charting her child through his years, at the younger end still rampaging, lots of behaviours, even in his teens she said she couldn’t imagine him not tagging on with them full time or being independent. However a few years later he was in a great college etc and doing really well.

Carrie I'm sorry about the meeting but your comment and the teacher overhearing did make me laugh. I can imagine doing something similar. Agree with others that it's far too soon to know what kind of support they will all need as adults!

The reading is great dimples! I hope your meeting goes well and well done on getting the OT back. Infuriating that you had to go through so much for them to do what they are legally obligated to do though.

We've had a real success this week. Ds didn't actually want to leave school today and he made it to three lessons with his class which is major progress. Going to try and get him to do nearly a full day tomorrow. Still no sign of him getting back on the bus though.

One thing at a time liv. Sounds like he’s doing well.

That's great progress Liv.

DS got moved up a reading level by his teacher today - he had been on the same level for a couple of years. He was very proud . He has also been helping DD learn her letters.

He did basically a full day today, which is amazing phew!

Dimples brilliant news about the reading!

Well done minidimples & miniliv

Pretty good week here. I met with SENCO for a chat and ds had a great swimming lesson.

I had the send team ring me back today (after I left another message) ds ehcp caseworker it was.

We were talking for an hour, basically she advised me not to apply to our local special school, she said on ds ehcp he’s too severe for there and they don’t take in kids with severe behavioural issues, they claim they have to safeguard their other students as the excuse and if an ehcp mentions frequent hitting (unfortunately ds does mention things like this) or any of the more challenging behaviours they reject you on consultation, she said they are well known for it, and she said if ds did for some reason get offered a place they’d say not long after they couldn’t meet his needs. So getting a place there isn’t advisable, so they can basically fuck off.

She’s going to ring me after half term to see how ds is getting on with his mini bus and if not much better then she’s going to arrange a meeting with herself, myself and transport manager.

Also she was suprised ds didn’t get high rate mobility, she’s told me to collate as much evidence as I can and do a change of circumstances with DLA, I did explain he gets high rate care, low rate mobility, but yes I wasn’t sure why he didn’t get hrm either, no one is sure really. She said looking at his ehcp and the school he attends she would of thought it would be a given.

So I’ll have to ask for some back up from the professionals who work with ds, I do have all his reports but I need specific shit, I’ve done the smi test and ds meets all 5 points of criteria, so now I need my evidence to base around those 5 points. I like to be efficient in doing their job for them, less likely to refuse your application that way. I’m not in any way desperate (he’s been on low rate mobility for nearly 5 years now) so I’ll take my time in gathering things I need so it’s all watertight before I apply.

She said there are some really good alternative school options for ds based on his needs, but they are much further a field, one being 1hr 20m each way, how’s that going to work when he’s doing what he’s doing on a 40 minute journey,

It would require me getting him there n back. And I’m fucked if I’m driving all day. I wouldn’t do that even if they gave me 3 disability cars 🤣

Its so shit isn’t it. Local school isn’t suitable, anything else is out of area including the one he attends and ds just cannot help but terrorise the transport and is on his last warning with it all.

Great progress @livpotter and @danni0509 , happy to hear. And @openupmyeagereyes nice re swimming, DD starts lessons tomorrow, I’m intrigued how it goes!

@danni0509 glad you got some info on options but depressing to be sort of automatically rejected from the SEN option for having severe needs?? Shouldn’t be the case , although I guess I’m glad they were honest about that. But suggesting something 1.20 away is indeed a stretch, do you reckon they were wondering if relocating is a possibility (is it? I know it’s a huge thing to move, esp without knowing how a new school would go, and I think you’re near your parents now?)

hope everyone has a somewhat relaxed weekend ahead.

@Ahna65 I wouldn’t commit moving to a new area just on the basis of not knowing how long ds would stay there if that makes sense.

We did originally talk about moving to be nearer this one back when he first started but the high rents there put us off, and we wasn’t sure if he would stay at that school, and obviously now I’m glad I didn’t because the school is pretty rubbish and I’m not really wanting ds to stay there to be truthful, but it’s a school for now… Whilst I look at my awfully short list of alternative options 🤣

Makes total sense @danni0509 - move such a big thing and like you say, for an uncertain outcome. But I’m glad someone is ‘thinking along’ , I guess that’s somewhat progress

Danni at least it seems like they're listening to you. Shame that there isn't a more appropriate school closer to you.

I have considered moving to be closer to better schools. The city closest to ours has a v good reputation for SEN provision. However, I'm hoping that I can get him into my current first choice which is 20 mins drive away....

I am feeling a lot better today, phew