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To feel so guilty? Parents with children with ASD - please regale me with tales you lost your temper? Feeling terrible!

(70 Posts)
VictoryIsAllMine Fri 01-Dec-17 11:06:40

DS is 8 and has ASD.

He's in a mainstream school where they don't have a uniform .

This is a complete nightmare as DS has sensory difficulties and clothes are a big issue for him.

I found a lovely jumper DS would actually wear without complaint . It was such a hit , I bought two more of the EXACT same jumper .

Today at 5:50am , DS declares the jumper is not as red as the the other original jumper and therefore he will not wear it hmm

He doesn't just say this though - he gets very cross and shouty.

He shouted at his two brothers who were waiting for him to come down to check out their advent calendars.

I'd worked so hard making them all lovely advent calendars and was really looking forward to this morning to see their faces - but it was just another morning of chaos.

Unfortunately , I also became cross and shouty .

Frustrated because I could see it was heading in to stress zone and also because the original damned jumper was still sopping wet in the washing machine !

I told him "I'm fed up - it's always you! " in an angry voice and as I walked away I looked back and give him a very mean look .

He cried.

I apologised and said I understand it's not his fault etc explained why I was frustrated too .

But now I feel terrible and terrible for his brothers too that yet again , their brother has "ruined" another morning.

We seem to have good weeks and bad weeks with him .

It's been a bad week with my patience rapidly waning - constantly repeating myself , constantly trying to fend off meltdown. Constantly trying to get him to listen and action the most simplest of things.

I'm worn out !

Is this just life with a SN child or am I just a crap mum?

Please tell me you're not all patience and virtue?

Aeroflotgirl Fri 01-Dec-17 11:09:11

I feel your pain, dd 10 has Asd and learning difficulties.i have lost my shit a few times. Massive hugs💗💗💗💗

Ekphrasis Fri 01-Dec-17 11:09:24

You’re not a crap mum. You’re human. It’s still very hard flowers

Aeroflotgirl Fri 01-Dec-17 11:11:28

Plus ds 5 is a little bugger and winds her up causing a meltdown. Holidays and weekends are the hardest. We do have respite help from SS, which really help.

Twinkletowedelephant Fri 01-Dec-17 11:13:08

Yep I've done that. I have 3 with ASD one also has ADHD and the constant on the go.. is just so draining.

Dd still mentions the time she called daddy at work because mummy kept shouting...

Mummy never shouts - in my house it's massively counter productive.

There have been a few times when i have had to go in and sit on a bed at night time and say I am sorry ..

I try not to go to bed angry or let the kids and tell the kids I love them every day

No gets how constant and draining it is

Pippioddstocking Fri 01-Dec-17 11:14:31

We are only human, sometimes we slip up, it's ok . Give him a hug later , try to explain why it happened and move forward . We can only do our best xxxxx

VictoryIsAllMine Fri 01-Dec-17 11:15:13

Thanks everyone flowers

It's very frustrating . I'm feeling so exasperated by it all at the minute .

haba Fri 01-Dec-17 11:15:20

It is v v hard, and everyone has their breaking point. Please don't be hard on yourself. He needs to know he's safe, secure and loved...but that his parents are humans too, not superhuman!

FWIW, we made so many adaptations to our lives to accommodate our eldest, it took us eight years to realise our youngest is also on the spectrum... Oops.

starfishmummy Fri 01-Dec-17 11:15:27

I have a 19yo with SN...don't beat yourself up. It happens to us all

haba Fri 01-Dec-17 11:17:23

Oh, and the feeling when you've made so much effort and done something special for them, and it's just discounted by them because they don't get it... Urgh.

Sirzy Fri 01-Dec-17 11:17:43

I would find it hard to believe any parent who says they have never lost their shit, even harder to believe one who has a child with additional needs.

I would be lost if ds School didn’t have a uniform. His school jumper is the only one he will reliably wear. I have just found two Christmas ones he approves of so he will be in them at home until Easter!

Worldsworstcook Fri 01-Dec-17 11:18:53

Recently my 12 yo asd DS has started saying he hates gays. He's making jokes about religion and gay people. I told him he knows 3 - he's adamant he needs to know who they are, these purveyors of disease and the reason the earth is doomed. I won't tell him except to say he likes them. I've told him so much, if he's out and gets smacked in the nose it won't be a gay person who does it! Gay people want kids too. He's determined it's a disease we are going to catch and mankind will not produce kids. I get so frustrated trying to get him to see reason but he is so rigid in his thought patterns I worry he's going to get into trouble.

VictoryIsAllMine Fri 01-Dec-17 11:20:34

Yes I get that feeling ; with DS there is no gratitude or appreciation .

He comes across as cold , manipulative and ungrateful . I know he's not - he just doesn't have the expression for it .

I know it's his ASD and I have to remind myself of that but I worked so so so bloody hard on his advent calendar and he just upset everyone this morning .

Urgh indeed!

IdaDown Fri 01-Dec-17 11:24:01

flowers

DS is HFA and dyslexic. Oh the guilt I feel when I remember him first (trying) learning to read. I didn’t know he was HFA and dyslexic.

Tomorrow is another day...

SylviaTietjens Fri 01-Dec-17 11:28:02

Oh victory flowers it’s shit sometime. It really is.

My 5yo has asd and is the sweetest little boy you’ll ever meet. If you know him and how he reacts to things that is, otherwise he comes across as a bit of a brat.

He spent the weekend at my dm’s a few weeks ago so that I could decorate his room to try and encourage him to sleep in there rather than in my bed. He loves trains and astronomy. One wall is wallpapered with stars, the light fitting is a model of the solar system that moves round, I even got a star projector so he can look at the stars in bed. I got him new bedsheets with trains on and made him a pin board with photos of everyone he loves and of him on days out etc. He came home, I excitedly showed him his room. He said ‘hmmm, I liked it before’. I reminded him how he loved stargazing and trains and they’d be with him all the time now. He said ‘I like reading about stars and planets, I don’t want to see them when I’m in my room’. I just slammed the door and started sobbing. Then he got himself in a complete tizz because he didn’t know what he’d done wrong sad.

TieGrr Fri 01-Dec-17 11:33:35

It's tough. DD is 6 and recently went through a biting phase. Every time she bit, I lost it and shouted at her. I hated myself afterwards because I know the shouting doesn't work and I know she's only biting because she's frustrated at something else, but in the moment, it's hard to take a step back.

Chaotica Fri 01-Dec-17 11:37:52

flowers cake I have been there. I am also a rubbish parent. Sometimes I just can't help it, even though I know that DC can't help it.

Caroelle Fri 01-Dec-17 11:40:01

My DD has ADHD and some very clear AS traits, and Christmas and the weeks before her birthday were always a total nightmare. A combination of excitement, and changes at school because of Christmas, used to send her into a state of hysteria which was very wearing for every one. I’ve also shouted or made comments like yours many times, which I really regret but she doesn’t remember. I also regret that my older DS got lost in all this, and he does remember. Unless your son is at risk of harming himself in any way, I would consider walking away and focusing on your other boys for a short while. None of what you have described makes you a bad mum.

haba Fri 01-Dec-17 11:40:52

Oh, Sylvia, flowers for you too... We know they can't moderate their reaction, but bloody hell, it's like a kick in the teeth!

Runningoutofusernames Fri 01-Dec-17 11:49:20

Poor you and him, it's so bloody hard isn't it! I sometimes have the same instinctive feeling of 'you ruin everything' with my ASD eldest - he doesn't do it intentionally, but his needs can be so specific and overwhelming that it can feel so unfair for other DCs and frankly as a parent too.

No magic solution, though I do try to make that the other kids and I get some time where each individual gets to be the focus of attention and call all the shots - makes it less gutting when it all goes to hell again... 😳 Good luck, and don't beat yourself up, it's hard and you're doing a great job

MrsLogicFromViz Fri 01-Dec-17 12:00:01

Like all of the PPs have said, dealing with an ASD/ADHD child is so tough. My DS is 10 and I have ASD too, DH is NT. Yesterday his (DS's!) 500ml bottle of Fanta got split in the electrician who was fixing our patio light's toolbag. Argh. As for school non-uniform days, they're a nightmare.

We're all behind you xxsmile

nickEcave Fri 01-Dec-17 12:07:17

My DD age 7 has quite a few autistic traits although not diagnosed. She can't bear tights or trousers but will wear cotton leggings under a school skirt. Today she decided that she is tired of leggings and won't wear them anymore but had no further suggestions about what to put on to stop her legs freezing. This went on for 20 minutes, she finally put on the leggings but then refused to wear even her usual fleecy cardigan (she refuses to wear a coat despite the low temperatures). I ended up carrying her out of the house half dressed. She was late for school and I was late for work. Like other posters I was hoping for a nice morning with both DDs opening advent calendars but it all went to crap and I had to let me older DD (yr 6) go ahead of us to school so she wasn't late.

MargoLovebutter Fri 01-Dec-17 12:12:49

Oh, Victory, that kind of stuff is soooooooooooooo frustrating. You've bust your chops trying to find a solution and it still isn't right. I'd have probably lost it too.

I was trying to think of time when ASD DS has made me lose it & I wasn't able to distill it to one occasion because there are too many but it was always that kind of thing, where I had gone above and beyond and found seemingly amazing solutions to stuff & they either didn't work, weren't good enough or went wrong. I'm sure I'm more grey haired than I should be.

It does get a bit easier as they get older. Although I took DS to a musical for his 18th this year, as he is musical and particularly loves musicals & whereas most kids know by this stage that they should say 'thank you that was great', DS gave me a running critique of all the bits that he hadn't enjoyed or found fault with musically on the way home on the train until DD kicked him, not so surreptitiously!

VictoryIsAllMine Fri 01-Dec-17 12:15:26

Thanks for all the support . It makes me feel a bit better.

I don't think anyone can understand what it's like raising SN children unless you have a SN child.

We have my parents coming round tonight for dinner . This is never fun as DS is usually in a bad mood after school but they also "feel sorry" for my other DC and go out their way to compensate them hmm

EvilDoctorBallerinaRoastDuck Fri 01-Dec-17 12:16:07

I'm pretty sure that DD 10 has ASD, I lose my rag at lot with her because the things that upset her just seem so crazy. I keep having to remind myself to be more patient.

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