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Struggling with DD who has autism [Title edited by MNHQ]

212 replies

lollipoprainbow · 27/11/2022 23:25

Following on from the 'fucking dementia' thread can I start one for autism.

I've had the worst weekend with my dd10 and all I feel I've done is yell. The final straw was going into her room just now and finding boxes of revolting slime festering everywhere and charms, paint, paper etc all over the floor. Feels like having a toddler she's so messy.

I feel like a horrible shit mum.

I'm not sure I can do this for much longer.

OP posts:
eelieza · 28/11/2022 01:59

This reply has been hidden

This reply has been hidden until the MNHQ team can have a look at it.

SequinsandStilettos · 28/11/2022 02:07

You obviously have not had to play referee with warring kids or ever been used as a human punchbag. Get back to me when you have been reverse-headbutted or your child has bitten you so hard they drew blood and your bruise looked like dv. Parents use MN to vent so that we do not lose it with the ones we love unconditionally.

SequinsandStilettos · 28/11/2022 02:11

Alternatively, you can vent yourself on the adjacent thread to this one.
www.mumsnet.com/talk/the_night_watch/4686776-horrible-thread-title-sentiment?page=3

Interested in this thread?

Then you might like threads about these subjects:

feedingfrenzyatfive · 28/11/2022 02:13

This reply has been hidden until the MNHQ team can have a look at it.

If you're not a parent of an autistic child/YP or autistic yourself then fuck off and tell your neurotypical bollocks theories elsewhere.

feedingfrenzyatfive · 28/11/2022 02:15

SequinsandStilettos · 28/11/2022 02:11

Alternatively, you can vent yourself on the adjacent thread to this one.
www.mumsnet.com/talk/the_night_watch/4686776-horrible-thread-title-sentiment?page=3

Thanks for flagging the other thread up; I honestly cannot believe that someone reported this thread to MNHQ. 😡

RobertaFirmino · 28/11/2022 02:16

This reply has been hidden until the MNHQ team can have a look at it.

Please don't use the term 'special needs'. It is outdated and offensive. Come back when you've cleaned shit off the walls for the umpteenth night running like my friend just has. When you've been punched in the face by your own child. When you've been left on your own with no support and no respite. When everywhere you go, people give you and your child filthy looks and mutter to each other.

That's the reality for so many people - including my pal - and all they get when they dare speak out is that 'b..b..but autism is a superpower' and a load of crap about Holland.

Shove your judgement in the bin, sunshine.

feedingfrenzyatfive · 28/11/2022 02:17

RobertaFirmino · 28/11/2022 02:16

Please don't use the term 'special needs'. It is outdated and offensive. Come back when you've cleaned shit off the walls for the umpteenth night running like my friend just has. When you've been punched in the face by your own child. When you've been left on your own with no support and no respite. When everywhere you go, people give you and your child filthy looks and mutter to each other.

That's the reality for so many people - including my pal - and all they get when they dare speak out is that 'b..b..but autism is a superpower' and a load of crap about Holland.

Shove your judgement in the bin, sunshine.

Well said 😀

Ericaequites · 28/11/2022 02:24

I have autism. I hate autism. It has narrowed my life choices and kept me from many opportunities. It’s not like going to Holland. It’s like going to Detroit, San Francisco, or Cape Town.
Hating the disease that has trapped your children is a reasonable response. The parents posting here love their children, but it’s so hard to see them suffer and have limited chances to be independent. It’s a hard path, and there is little public help available. It’s fine to be frustrated and use dark humor

NiteWotcha · 28/11/2022 02:26

Hi folks - sorry, I’ve had to hide the other thread in NightWatch Confused

do post the links on there that might be useful here

OP Flowers

MrsThimbles · 28/11/2022 02:26

Yes. Fucking Autism right enough.

My son is 31. Classic Kanners Autism, Epilepsy, Tourette’s Syndrome plus a recent diagnosis of Bi Polar disorder as well.

Its the gift that just keeps on giving. 🙄

Still wouldn’t be without my 6’3” version of Tigger though I do wish things were very much different for him.

NiteWotcha · 28/11/2022 02:26

And I’ll keep an eye on this thread too Smile

JoanOfAllTrades · 28/11/2022 02:27

@lollipoprainbow (another mumsy post, and yes, {sigh}, I am old enough to probably be your mum!)

As a parent of grown up ND kids, it will and does get easier! That no consolation now and ND kids, like NT ones, can be right little CF’s. But, all you can do, is what you are doing, as far as your DD is concerned!

As far as you are concerned, where is the kindness and compassion towards yourself? As a mum, you need to allow yourself some time out!

You know, I keep giving up smoking and then starting again. Why? Because, even when I lived in the north of England, where it took me longer to put my coat, gloves, hat, wellies on to have a smoke, than it actually took to smoke, it’s my “time out”. And I am absolutely not telling you to start smoking, I hate it, hate the smell and it’s an awful addiction to have! DH annoying me? I can go outside and have a smoke. Kids annoying me? Same. It’s gives me a few minutes to reflect and think about what’s going on and then to decide how I want to react without just reacting, iyswim.

ND kids, like NT kids, fall in to 2 categories - really neat and tidy from a young age and awfully messy and chaotic from a young age. No parent that I’ve ever known has been able to make a neat kid messy, or a messy kid neat!

Is DD’s room absolutely so dirty that you need Kim and Aggie or is it just the usual detritus that comes with messy kids? If it’s the former, then yes, a battle will commence that won’t be over until DD leaves home, the victor of the war. If it’s the latter, then take a breath, close the door and walk away. You’ll find it will get to a certain point and then she will tidy up. Simply because she can’t find things or her friends will come over and peer pressure her! Don’t allow her though to have plasticine, slime or anything like that. Your carpets will never forgive you!

ND kids, as you probably know, cannot really process a long list of things and actually, genuinely do forget things by the 3rd item - I’m ND and sometimes I’ll tell my psychiatrist things and she laughs like a drain then says “poor DH”. Poor DH indeed! Luckily he’s the yin to my yang.

When you want to tell/ask DD to do something, ask for one thing at a time. Don’t say “go and put your PJ’s on, clean your room, clean your teeth, your room's a complete sty”. Say “DD, I’m asking you nicely to go and put your PJ’s on”. Make sure you’re down on her level and she’s totally focused on you (which is hard for ND people, but please do persist as eventually it will work). If/when she refuses, you can use a carrot such as “ok then, don’t put your PJ’s on. I’m writing to Santa”. Don’t engage in arguments, she’s a child! And no is always a complete sentence.

I used to use Santa, the Easter bunny, the tooth fairy, whatever religious celebration or birthday was coming up. As they got older, I used sleepovers (hah, your room is so messy, where can anyone else sleep?? And make it a proper question, like really? Where?).

I’m probably telling you things you already know, but patience (and giving yourself a timeout from the ridiculousness of arguing with a child) is needed because you’re using a different way of parenting and you have to find what works for you.

I also hope I’m not coming across as condescending as I’ve had 37 years of parenting ND kids and I can really only speak for what worked for me. And all the kids were different so needed a different approach but getting down on their level, keeping calm, and giving them 100% of my attention as I told them something, worked for all of them. And only one instruction at a time. Even now, my 18 y.o. still needs that and my 17 y.o. still lives in a sty! If I knew how to upload pictures, I would show you her room, as it was after I’d finished decorating it (she’s had it down twice, complete with new furniture as well - and that’s in 7 years, whilst my room seems to be the dumping ground all the time!) compared to how it is today, with her existing living in it!

It’s also okay to ask your family for help - be it babysitting for an afternoon or overnight, or practical help!

I’m afraid I’m the type of mum who goes around to her children’s houses, or friends houses and I tidy or clean. Not because I’m judging them but because it’s what I do, it’s a way to make me show them how I value them and they all take it in the spirit in which it’s given. With love and also understanding that they all have busy lives, young children and cleaning is and should be the last priority when you have children that want to have fun with you!

So ask, don’t be proud and don’t think that if your house isn’t immaculate then people are judging or you don’t want people around. My house, even when I had the 7 kids at home was always immaculate. Why? Because both my husband and I are clean freaks, like everything in it’s place and have a system so that we don’t have to spend hours a day cleaning but do it as we go along. And because we came to learn that we can close the children’s bedroom doors and leave to how they want to live! Plus I find cleaning, along with decorating, very therapeutic and it kills me that I can’t do it so much now due to physical issues.

Find the place that you are happy with in terms of parenting and then go with it🌹

Thenose · 28/11/2022 02:53

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ExhaustedFlamingo · 28/11/2022 03:03

Hey OP.

I wrote a really long response on the other thread, but of course it's been zapped now so it never posted.

Excuse my bluntness (I'm too knackered to try and work out how to word this better) - but why were you yelling all weekend? As in, that's just going to escalate things and will just stress you and her out.

I appreciate you're in the middle of the storm right now, and probably just want sympathy. I was just wondering when this passes, would it be possible to step back and re-assess how you respond or anticipate problems?

I have SEN twins myself, one of whom has very high needs. Still in nappies at age 13, been bitten, punched, headhunted blah blah. I only reference this to demonstrate I really do appreciate how dire things can be. I'm like a walking zombie a lot of the time.

I'm not being judgemental about the yelling, it's just an observation. As an autistic woman myself, it was the first thing that jumped out at me about your post. I was just wondering if you managed to approach things differently rather than yelling, whether it might create a calmer atmosphere and ease some of the anxiety. Now obviously isn't the time, but maybe when things have calmed down it might be good to look back and see if there was anything you could have done differently. I still fuck things up all the time, and usually when the moment has passed I can look back and see straight away what I could have done differently which might have helped. And even worse, I regularly repeat the same mistakes - especially around birthdays and Christmas etc 🤦🏻‍♀️

OhRiRi · 28/11/2022 03:27

My favourite phrase is "does it matter?". I find it helps a lot and I am constantly asking my husband (also autistic so struggles a little more with rigidity of thought) if it actually matters that our son (ASC & ADHD) sits "properly" (what even is "properly" for a 4 year old with SPD and ADHD at the end of a long day?) at the table to eat dinner, does it really matter that he's fighting or pacing up and down the dining room if he's eating?

E.g. not putting pyjamas on. Does it really matter? If yes, pursue it. If not, let her get on with it. She'll either put them on eventually or she won't for whatever reason. I have found giving my son autonomy has helped a lot. E.g. I'll ask him if he wants a coat on. No? That's fine, he'll get cold and ask for it eventually, which is teaching more than an argument over putting it on just because mum says you should.

Picking our battles has helped a lot in terms of reducing unnecessary stress in our house.

OhRiRi · 28/11/2022 03:29

fighting - that would matter! That should say fidgeting

ExhaustedFlamingo · 28/11/2022 03:33

OhRiRi · 28/11/2022 03:27

My favourite phrase is "does it matter?". I find it helps a lot and I am constantly asking my husband (also autistic so struggles a little more with rigidity of thought) if it actually matters that our son (ASC & ADHD) sits "properly" (what even is "properly" for a 4 year old with SPD and ADHD at the end of a long day?) at the table to eat dinner, does it really matter that he's fighting or pacing up and down the dining room if he's eating?

E.g. not putting pyjamas on. Does it really matter? If yes, pursue it. If not, let her get on with it. She'll either put them on eventually or she won't for whatever reason. I have found giving my son autonomy has helped a lot. E.g. I'll ask him if he wants a coat on. No? That's fine, he'll get cold and ask for it eventually, which is teaching more than an argument over putting it on just because mum says you should.

Picking our battles has helped a lot in terms of reducing unnecessary stress in our house.

This is really good advice. We follow exactly the same thought process and oh my goodness, it's helped so much! Removing expectations and pressure reduces anxiety and hands back control, which also reduces anxiety - it's a great strategy.

MiddleParking · 28/11/2022 04:12

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All good to be “hateful” if her child was non-verbal then yeah? Dickhead.

WellingtonBoot · 28/11/2022 04:23

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MrsThimbles · 28/11/2022 04:49

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Having language and an above IQ does not mean a person is immune to everything else that can be part of autism - and it’s not the so called strengths mom talking about.

MrsThimbles · 28/11/2022 04:54

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I hear you and in alphabetti spaghetti order I’ll give you Bi-Polar Disorder, Epilepsy and Tourette’s.

Whatnextiwonder · 28/11/2022 05:12

All my children are autistic, and so am I. And speaking from personal experience… yeah, fuck autism.
I’d do anything for a life stripped of the struggles autism brings. I wasn’t diagnosed till adulthood, after I had had my children. But if I knew then what I know now. I wouldn’t have had them. And I know that makes me sound horrible! But honestly it’s shit, and no amount of masking changed that reality. There’s no way I’d choose to inflict this on another life.

And I know I make things hard for everyone else too, and I can see that everyone thinks I should just get a grip and stop feeling like I do, I don’t blame them.
I don’t know what to do about that though.
tired of it all.

ThePumpking · 28/11/2022 05:21

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Way to make someone close to breaking point feel worse. Don't be a knobhead if you don't know what the other person is going through

MeowwandAnder · 28/11/2022 05:22

My DS has ASD, I expect older DD does too - but able to mask and make it through mainstream. I’ve decided it’s occasionally easier to say fuck being an adult and attempt to live in their childish world where things like addressing mess, following adultish rules only get in the way of their need to explore and play. DD does of course use a knife and fork now, but when she used to struggle - I’d ask myself - do other mammals manage without them? They are a pretty unnatural Homo Sapiens invention which I’m enforcing on her - just so she can fit a social norm….

lollipoprainbow · 28/11/2022 09:06

@Thenose please do tell me the strengths you are talking about because from where I'm standing I can't see any????

Ps thanks for pointing out that my parenting is shit.

OP posts: