Primary school auties step into Christmas and the New Year - thread 8

[openupmyeagereyes]

New thread.

This is the continuation of the thread for parents / carers of autistic children / children with additional needs. Most of us are parents of children in year 1 / year 2.

Links to old threads

Thread 1 - www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Thread 2 - www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 3 - www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 4 - www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 5 - www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1

Thread 6 - www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1

Thread 7 -
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Somebody was referring to people with learning disability as stupid on one thread I was on, I called her out several times and reported her posts and yet she carried on. It might of been called that back in the day but you just do not refer to people with learning disabilities as 'stupid' in 2021.

Another, when a residential school worker, basically in a nut shell, called the parents out on dumping their kids on the centre saying none of the staff were trained and they were only on minimum wage and having to deal with such challenging behaviour, she said you can manage these challenging children at home by reading for tips online and doing parenting courses, asif that's not all been exhausted when you are at residential stage. I told her to get a new job and stop moaning about minimum wage when carers allowance is £67 a week, that thread got deleted.

God I've loads lol.

I deleted Mumsnet for a bit if you remember, for these very reasons.

Then I get annoyed at some of the posts from parents with autistic children, one recently, saying she didn't understand how a verbal autistic child got the same rate DLA as her son who was non verbal and about age 2, or something like that. I took from it she didn't think a child should get high rate care if they could speak, as though speaking makes them high functioning?

How is being verbal any relevance?! Send your child to me in the post, I'll send you mine. 😂 Ds was a fucking breeze when he couldn't speak in comparison to now. Plus he is in a class of which a few are non verbal yet he needs the most support, it really doesn't mean anything.

I should just stick to this thread, can't help myself tho!!

Ah ok I may have seen that thread in days of old.

We did a bit of ABA with DS when he was very young, not much and not intensively. For him it didn’t work at all, he wasn’t having any of it, but there was so little they could find to motivate him they were on a hiding to nothing from day one. It was like, ok hold the pen and we will reinforce you with a chocolate button. Well, DS loves choc as much as me but really, after 20 choc buttons he had had enough!!! They used to say give me his favourite toy, the iPad as a reinforcer?? Well that worked… not!!

I still reinforce certain things (really the toilet) but that was the advice of the continence nurse, not called ABA, just a strategy. But is that a type of ABA, who knows.

carrie we all use reinforcers on our children and ourselves, I don't think it's exactly the same thing. Using ABA as an intensive therapy for 30 hours a week, or whatever they recommend is quite different I feel. Where does that allow the child to play, to just be without being constantly pushed to perform.

danni sounds like you've seen some doozys. I can't believe MN didn't delete the 'stupid' one asap. Absolutely outrageous. And no offence to that lady but a NT 2 year old needs a high level of care anyway. My friend has a NT 2 year old dd and she talks but it's hardly conversational, more like 'mummy again', that sort of thing. Maybe her ds will get a higher rate when she's still wiping his bottom at the age of seven, not when it's expected at 2!

Changing subject, any good or bad pressies… and any good sales buys (or intended ones??).

DH gave up on the nightwear but bought me a weighted blanket which is fab!! I’ve stolen DSs a view times, I don’t think he looked at the weight tho so it would take me 20 mins to get out in the event of a fire 🤣🤣.

Sales, I’m losing my marbles. My user name is apt as I really WAS Carrie Bradshaw for years (only met DH in 30s.) I still pick up lovely shoes and clothes but then think this is fine but when will I wear them??!!! I bought some Prada heels with a work bonus a few years ago which was madness as I cannot get out of the house in them (too pointy, too high.) Sometimes I’ll get them out and sit in the house for 5 mins then they go back in the box…. 🤣🤣

No terrible ones tho DH got a hat from his mother that would not fit a 2 year old…

DS has just gone to sleep...???
DH got me my fave book in a lovely edition qnd q spa day :)

Yikes Magrat! Lovely presents though.

carrie before Christmas I bought myself a sequinned jacket from M&S, I had to stalk it to get the right size. Only really suitable for Christmas should we ever get out again… I also bought myself two new coats

Presents I did well with. A good haul of books, scarves, jumper, chocs, smellies.

Omg @danni0509 some people are so totally clueless. I've just got more annoyed at that thread and need to step away from it for a while I think. One comment was that aba is only really debatable in 'hfa' as with 'more severe autism' its pretty much the only way to have 'normal family life'...I mean wtf, what does that even mean? We all have our own version of normal! Does being normal mean I can't make reasonable adjustments for my child, that I have to drag him out to lits of family events and go on big busy days out, because that's what normal.people do?? Our dc have a disability, ffs, would I throw away the crutches of q child who couldn't walk because making them walk would look.more normal?? No! So why do we try to make ND kids more NT?? Jot us, obvs. Argh. Yes, our DC need a toolkit of how to navigate the world, but making them feel that they're not good enough by suppressing their natural selves is so so wrong.
Anyway.
@carriebradshawwithlessshoes ooh sales! Fun! I love looking but can't find anything this year.
@openupmyeagereyes yep it was a late one last night! Don't know why. New switch game doesn't have a blue light filter though, could be that.
I am doing Dry Jan again this year and have just bought a treadmill in the sales. Eek! Health!

Magrat I just remembered that my grandmother was forced to write with her right hand at school. It gave her a stutter as a child, just the impact of suppressing something so fundamental. She grew out of the stutter but I’d love to ask her thoughts on it. Sadly she died years ago so it’s not possible.

A treadmill is a serious sales purchase! I’ve had a cross trainer for years, it rarely gets used I don’t need to do dry Jan as these days I’m not very tolerant of alcohol and it’s not very compatible with ds’ sleeping habits. He didn’t go to sleep until 9:15 last night, but did sleep until nearly six which was fab.

I don't drink either open, haven't touched a drink since i was about 18. I stopped smoking 3 years ago, (e cig is another story)

Ds had another funny night, sleep at 10pm, awake at 4.30am. He's not in a very tolerant mood this morning.

Ds is left handed, I would never force him to be right handed but he drives me mad smudging his writing being left handed.

Magrat, I started a diet on the 27th. Eating between 12-6pm, I've done the intermittent fasting diet a few times. I don't eat anything particularly special just what I usually would (even McDonald's) but I only eat in that window.

I got weighed on the 27th, 15st 12lb.

2 years ago I was 11 stone!

Need to sort myself out, just had such a shit time with ds and behaviour, school. Dh job etc etc no excuses really but I've been depressed, and I binge eat when feeling shite.

Liv & dimples I hope you're both ok.

danni I’m left handed, as is one of my sisters and my ds. People aren’t made to write with their right hand any more but back then they were, it was rather superstitious. I used to smudge my writing a lot, we had to use fountain pens after pencil at school.

Good luck with the diet, you’ve had great results with IF before. I’m on and off it, I love the idea of it but find it hard waiting for a latte and breakfast. I tend not to eat after dinner though and really I only have a few pounds to try and keep off.

I have encouraged ds to use scissors with his right hand as I do. It’s much easier, scissors often don’t work properly if you use your left hand. Hopefully that’s not quite the same thing!

Hello to everyone on this long-established thread: Danni, Open, Magrat, Liv, Light, Carrie....sorry if I've missed anyone out. I have been following this thread for some time but as I'm not much of a social media/forum user I haven't had the guts to join so far but I hope you don't mind if I do join as I know you have all been going for quite some time now.

My DS is 6 (Yr 1) and we got his ASD diagnosis in October. So much of what you all say about your own DCs resonates, and has done for a long time. He is OK at school it seems (or WAS ok in school), but we get a lot of difficult behaviour at home and he is highly anxious. I think we really step in to deeper MH issues a lot of the time when he is particularly bad.

What I find really hard is the huge aversion to his sister (8). He has become obsessed with every single noise she makes which makes him scream in despair. Headphones used to help this but not any more. I had to go to the GP Xmas Eve to get something prescribed just to get me through Xmas/boxing day with all the screaming/screeching.

I think he's probably a really good masker because he does manage to hold it together at school and then we get the fall out. He stopped being able to manage the last week of Christmas term and we kept him off for the last couple of days as he was just sobbing non stop about going in and we were physically struggling to get him out the door. He is already saying now that he won't go back (has been saying this since they broke up for Christmas) so I'm dreading first day of term. As someone said on a previous thread, it's my only respite when he's like this and I need the time when he's at school to physically recover and buoy myself up ready for his return.

Just to say, I've found so much of what you all write about your own parenting with your DC inspiring and how you all cope so remarkably well. Maybe I'm hoping that by joining this thread some of that will rub off on me as I feel permanently guilty at how quickly and how often I lost my temper with DS when he can't actually help it.

How often I LOSE my temper, not lost!

Hi & welcome, the more the merrier x

Don't worry too much about losing your temper. You need the patience of a saint. I often feel guilty for telling ds off all the time or over reacting or putting him to bed as early as I can because I can't take his shit no more, but then I look at friends with ordinary kids and how stressed they are and their kids are fucking angels in comparison so it makes me feel better that actually I'm not doing too bad with how challenging ds is. I've never hit ds or anything, but I do / have shouted and often want to run far away!! But I feel shit that I get stressed with him. He can't help a lot he does. But he pushes my buttons near constant.

I read a thread on here the other day about a 9 year old swearing at their parent and the replies were ranging from, I would of gone nuclear on him! to remove his iPad for a month! To he should never see the light of day again (ok, I made the last bit up lol) but you get the idea, I was reading thinking, hmm ds swears on an hourly basis, he actually told me he 'fucking hates me' this morning because I left him in the car with my mum whilst I run into m&s and got him jelly worms instead of Colin the caterpillar biscuits he wanted but I'm not a mind reader and he didn't tell me that's what he'd prefer. What a crime I committed!

I would dread to think how he'd get on in a family with less patience

Thanks for replying Danni and making me laugh, that has really cheered me up. None of my friend's kids have SN and I dread to think what they would think if they had a fly-on-the-wall look at our family life and how it consists of screen time, x-box time, kindle time and trying to calm ds down time! He won't get dressed at the minute (HUGE sensory issues with clothes) so we're out of options with doing anything for the holidays.

Managing your temper is so much easier when there's a regular break like school going on. I find the daily fights/resistance from the moment he wakes up just wear me down to the point I have nothing left. I've never hit either but I have moved him away from a situation and caught him with my rings and he's screamed at me for hurting him. Likewise OH moved him in to his bedroom the other day because he just wouldn't stop screaming and DS claimed that he'd been hurt again. I feel all out of strategies to help him now and we just go day to day, walking on eggshells and trying to keep things calm and taking his sister out to give her a break from it.

We've had times like this before when I've reached the end and felt I can't cope anymore and it has got better (eventually) so I'm just hoping the new year and the return to some kind of routine will improve the situation.

Sometimes I feel I try and live too much of a 'normal' life but taking the kids out, doing things, seeing friends etc when DS just can't handle it and I need to keep that in mind more. But I don't want to compromise his sister. And he seemed fine a lot of the time when we used to go out (going to swimming lessons, shopping etc) so I'm reluctant to stop everything and completely retreat. We don't have any family nearby (OH has his parents but they can't really cope with DS) so that makes it harder.

Haha love it! Ds has an iPad, dh PlayStation he plays on, and now a switch which we got him for Xmas, I said to dh it's more back ups for when ones on charge!

Exactly the same as us! That moment when you realise you forgot to charge a device.....!! AaaaaahhhHHH!!!

Sounds v similar to my own feelings.

I go through periods of feeling like I can't do another day, then I do manage another day somehow and things settle down, (settle, well not really, but you muster up something from somewhere don't you to keep going) then it go tits up again, and I think no can't do this anymore again. And around and around you go.

Always roughly school holiday time my mood plummets off the face of the earth.

We have no family help either, my mam will sit in the car with him harnessed in if I need to run in a shop whilst dh is at work, but no fucker will actually take him 😂 I don't blame them, but there has to be solutions down the line. He only slept out once when he was 2. He's 8 in 3 weeks.

Ds goes to school for 3.5 hours a day (for the moment), plus an hour travel time a day, so 4.5 hours a day is just enough for me to get a bit of energy back. Go to the shops alone, and think straight.

I live for term time and bed times let's just say. x

Ds does qualify for respite and I'm every so often persuaded by professionals to take the offer up and have a care assessment, but I'm my own worst enemy. I moan nobody helps, but I couldn't think of nothing worse sending ds to strangers. So it's my own fault really, but I have valid reasons.

They wouldn't know how to manage him (no matter how trained they were. Don't care how much they try to reassure me, I know people who do respite care and they aren't overly trained or experienced - and it's all back to if you have met one person with autism isn't it, they assume they know how to manage as they have done an autism course, no autism strategy works! although I think his adhd and odd muddies the waters there) ds is a new breed in causing havoc. He thrives in dangerous situations which he puts himself in very frequently and I just couldn't trust anyone to keep him safe.

(School struggle with trained staff permanently by his side and his teacher often mentions to me about ds determination to harm himself or others through his outrageous outbursts, but school environment is completely different to letting somebody have him in their home or take him out into the community isn't it?) I don't even let dh take him out alone, because I know he wouldn't manage him, (he definitely doesn't manage him) crazy right? his own dad. I'm even needing assistance when I take him out this past year. If I have to take him out alone, I have sweats and palpitations.

I don't know what the answer is long term...

I see myself as an 80 year old lady dragging ds off the curtain rails when he's swinging on them.

It's bloody tough isn't it. Yep I agree I've reached to the depths of what I have and pulled something out of nowhere to keep going. I wish I could drop the constant guilt I feel about everything - that would help me for a start.

God, when I think back to term time Oct/Nov this year he was going to school fine, going to bed and sleeping fine, and we were totally managing his behaviour. I didn't realise how good I had it!!

I'm working again tomorrow (supposed to be working now!) and OH is meant to be taking them both out tomorrow but I'm trying to work out how he's going to get a) DS out of the house and dressed when every item of clothing he has is apparently torture and b) sat next to his sister in the car for 45 minutes when he can't stand the sight/smell/sound of her! I feel poor OH is going to have an interesting day......

Open ds is also a lefty, we got him some left handed scissors which seem to work pretty well.

Welcome callhimmrraider! Sorry you're having a difficult time. Does your ds have support in school?
We all lose our temper sometimes! I have had some parenting moments I'm really not proud of.
Also I don't think ds has been off his ipad once since he finished school!

Danni you have so much on I'm not surprised you find dieting on top of it all difficult! I've been doing 5:2 for about two years but I've completely fallen off the wagon recently because of all the stress!

Danni, I completely understand about not trusting anyone else to keep your DS safe. I think we would probably qualify for respite (definitely at the minute) but I'm a social worker and I've seen what respite looks like in these cash-strapped times. He would hate every minute of it and I wouldn't be able to relax knowing how unhappy he was.

Thanks for the welcome Liv. No he doesn't have support in school as, so far, he has masked really well. He will need it though as the mask is slipping and he's losing the ability to hold it all in. Senco at our school is pretty useless and they're not a good school for SEN so I'm firing myself up for the battle to commence for EHCP next year. He sees Ed Psych in January so that will form part of the evidence for the application.