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To be done with autism

1000 replies

stargirl1701 · 11/07/2023 13:54

I'm done with it.

DD1 is autistic. She is nearly 11, diagnosed at 5. We have made numerous adjustments at home. School have made numerous adjustments. All to no avail.

She swore and kicked her little sister yesterday. Immediate consequence no screens for 24 hours and sent to her room. Of course, meltdown. 2 HOURS later after punching and kicking me she complies.

I'm done.

The needs of the many are now coming first. I'm on my sixth anti-depressant, DD2 is terrified in her own home, DH spends his life walking the dog trying to remain calm in the face is extreme provocation.

I'm done. No more. The 3 of us are coming first for the first time in more than a decade. I'm done.

No more empathy. No more trying to understand. Done.

No matter what we do, she has violent meltdowns. She thinks of no-one but herself. Modelling doesn't work. Talking incidents through doesn't work. She won't use any strategy she has been taught to avoid a meltdown.

I'm done. Time to live our lives.

OP posts:
Thread gallery
5
stargirl1701 · 11/07/2023 20:21

@Longtimelutker2019

You simply must read the documents I have linked to if you wish me to engage with you. Otherwise we shall be at cross-purposes.

OP posts:
LuckySantangelo35 · 11/07/2023 20:21

StefanosHill · 11/07/2023 20:10

I hope the op isn’t just putting one child in the room all the time

op?

@StefanosHill
@Stompythedinosaur

maybe try reading OP’s posts

doubleshift · 11/07/2023 20:22

I'll ignore the awful comment on this thread, including yours OP and tell you what helped to support me and my autistic (PDA) child - visit www.newboldhope.com/ and get support from their Facebook group

I have never ever ever given up on my child and have no respect for your attitude towards yours.

Zarataralara · 11/07/2023 20:22

Longtimelutker2019 · 11/07/2023 20:17

regardless she’ll need to mix with normal kids in society at some stage won’t she - what do you do when she hits/bites you? My natural instinct would be to hit back and send a message of “that’s what happens when you do that” - sure she’s be less inclined to do it again, softly softly clearly isn’t working!

@Longtimelutker2019 the OP has pointed out a) she lives in Scotland and b) smacking or hitting a child is illegal in Scotland. Anyone doing that could be arrested and charged. She is not going to hit her dd so maybe let it go with the hitting theory?

truthhurts23 · 11/07/2023 20:23

stargirl1701 · 11/07/2023 20:01

@truthhurts23

I think you are right. Might try photos of her 'doing' the strategies and use that as a 'menu'. It's catching the right moment. Once the scale tips, there's no getting it back.

I was taught that strategy by my dds school and it really works. Having PECS or photo book of scenarios to refer to, one for behaviour , one for going out, one for house rules
that could distract her long enough to calm down , whilst she looks through the photos
her triggers too, when you see her getting grumpy, or she starts shouting it’s like the warning that she’s almost at that point and we can de escalate it

you just sound like you need a break , like the saying you cant pour from a empty cup, keep loving her and stay strong
you’re not alone when you feel like this, many of us on this thread have been in this place before we are all just trying our best

VitoCorleoneOfMNMafia · 11/07/2023 20:23

Longtimelutker2019 · 11/07/2023 20:17

regardless she’ll need to mix with normal kids in society at some stage won’t she - what do you do when she hits/bites you? My natural instinct would be to hit back and send a message of “that’s what happens when you do that” - sure she’s be less inclined to do it again, softly softly clearly isn’t working!

My parents hit me. My mum only stopped when one day I turned around and hit her back hard enough to bruise her face. My dad, to his credit, stopped before that incident.

My point is that DD1 doesn't learn not to hit people by her parents hitting her. Quite the opposite, in fact.

IAmSalmaFuckingHayek · 11/07/2023 20:24

StefanosHill · 11/07/2023 20:17

Yes.

How many hours per day in the room v out?

Does it matter?
Sometimes my son will be in his room all
evening, I won’t see him. Because he knows it’s up to him, on other nights he’ll spend time with us. It depends on the demands of the day and how much decompressing he needs.

I’m similar, my favourite times are when I’m on my own and don’t have to
interact with anyone!

AnorLondo · 11/07/2023 20:25

Longtimelutker2019 · 11/07/2023 20:17

regardless she’ll need to mix with normal kids in society at some stage won’t she - what do you do when she hits/bites you? My natural instinct would be to hit back and send a message of “that’s what happens when you do that” - sure she’s be less inclined to do it again, softly softly clearly isn’t working!

And if you live in Scotland like OP, you would be breaking the law.

AutismProf · 11/07/2023 20:25

@mintlily
"I don't understand how parenting by giving rewards for good behaviour and consequences for bad behaviour is at all abusive - what a weird suggestion from some people"

It's not so much abusive as a misunderstanding of how and why behaviours happen.
Giving rewards and punishments is predicated upon the idea that all kids "could" behave, if they just wanted to enough. That they have the necessary skills, they just lack the motivation.
This is, frankly, bollocks. Apply the principle to other situations where people struggle and it becomes obvious. If a person cannot walk, let's punish then every time they don't walk, and offer rewards for when they start walking. If a person can't see, let's punish them for failing to see and offer rewards for when they do.

What's worse is that whole class systems reward the kids who are already doing well whilst shaming those who don't have the skills, whilst not actually doing anything to teach those skills.

Imagine if your kid had been born with cerebral Palsy and couldn't walk, and as intervention instead of physio the school suggested a reward system. All the kids who can already walk get a sticker every day and a reward on Friday (golden time). Whereas your kid gets no stickers, and no reward on Friday. No one kearns anything, except that your non walking kid learns a sense of shame in themselves and feel "worse than" everyone else for something outside their control.

Now, autistic kids. They all differ, but struggling to understand NT social code is a common issue. This can manifest in difficulty managing their behaviour, a meltdown from frustration for example. The behaviour is just a signal that there is something they are struggling with, just the same as being in a wheelchair is just a sign that someone is struggling with walking.

So the reward system for "being good" rewards all those lucky kids who understand the social rules and have the skills to follow them. They learn nothing from the system, except that something they can already do intrinsically now attracts an extrinsic reward, which is not a great idea for life motivation. The autistic kid learns that they don't get stickers, that they fall short, that they are less than, and that everyone seems to think they "should" be able to control themselves if they just wanted to a bit more. But no one actually teaches them why it's hard, or how to control themselves etc.

If you wouldn't punish a kid who can't walk for not being sufficiently motivated to walk, then you shouldn't punish an autistic child (or indeed any child) for not understanding and being able to follow social rules.

lucysnowe2 · 11/07/2023 20:25

Hi op, big hugs from me - I've been there. DD is miles better now but its still a bit tricky for her and her little brother to spend time together without it coming to blows.

With regards to medication... other people have mentioned sertraline, and DD at that age also had a go with risperidone and quitiapine (apologies for spelling). They are both basically anti psychotics, so a little scary, but they can really work with some kids.

Re school... DD had a lovely lot of support at her mainstream primary including RDA etc, but basically could only hack education in a specialist provision. Sometimes mainstream just by being mainstream is 'wrong'.

If you haven't already, I recommend looking up Yvonne Newbold on Facebook, she runs groups of parents with violence kids that have been super useful to me over the years, and a great place to vent.

Finally (and sorry if you do this already), please do consider having no limits on screentime, and a personal phone/tablet for both your DDs. Extreme, but vital for everyone's sanity. xx

Longtimelutker2019 · 11/07/2023 20:25

stargirl1701 · 11/07/2023 20:21

@Longtimelutker2019

You simply must read the documents I have linked to if you wish me to engage with you. Otherwise we shall be at cross-purposes.

I’ve read them, but don’t agree fully! Shock factor may be the key, and not just excusing this behaviour and making allowances. Glad you don’t support “Screen time” as a necessity, as we all grew up without it! There was a reason kids, NT air otherwise, didn’t rule the roost in decades past and this is it! It doesn’t have to inflict harm, but shows she is NOT in control and CANT do what she wants!

stargirl1701 · 11/07/2023 20:25

@StefanosHill

Today that was the afternoon. She played with her Snap Circuits, painted with her acrylic paints and read an Alex Rider book.

She had dinner in the kitchen (her choice) and then asked for a bath. That lasted a couple of hours.

We did the bedtime routine and she asked for a tuck-in. I'm not sure she will fall asleep as no melatonin tonight but she's now cosied up in bed listening to an audio book.

We all had a peaceful day. No meltdowns. No violence.

OP posts:
StefanosHill · 11/07/2023 20:26

LuckySantangelo35 · 11/07/2023 20:21

@StefanosHill
@Stompythedinosaur

maybe try reading OP’s posts

I have. I see there are clubs and activities

But when in the house it’s the room

I assume the op will still spend time together at some point when not in clubs or room though

But the pp made me question this

stargirl1701 · 11/07/2023 20:26

@Longtimelutker2019

No way you have read the UN doc is such a short time. You may disagree but is the law as well as being immoral.

OP posts:
ShodanLives · 11/07/2023 20:27

Longtimelutker2019 · 11/07/2023 20:25

I’ve read them, but don’t agree fully! Shock factor may be the key, and not just excusing this behaviour and making allowances. Glad you don’t support “Screen time” as a necessity, as we all grew up without it! There was a reason kids, NT air otherwise, didn’t rule the roost in decades past and this is it! It doesn’t have to inflict harm, but shows she is NOT in control and CANT do what she wants!

Please never have children.

stargirl1701 · 11/07/2023 20:28

@lucysnowe2

I've sent a 'friend' request. Many thanks.

OP posts:
Sheselectric88 · 11/07/2023 20:28

@stargirl1701, @Elisheva is on to something here. I know your dd takes a multi vit but I was told this is not sufficient if it’s a deficiency. It’s often the less discussed or tested for nutrients too like zinc or something. A doctor told us that it would be impossible to test for them all but a few key signs can be spotted. Biggest is behaviour, irritability and confusion, lack of luster in the skin and hair, brittle hair and nails, dry lips and frequent ulcers, tummy pains and constipation, pale or yellowish skin, eye bags, up and down academically, eye sight or hearing troubles, slow processing, loss of speech at times, tiredness, anxiety and it can also cause reluctance to eat due to the body’s response to protect itself as it’s often caused by malabsorption of food. Malabsorption is common in autistic dc due to introception difficulties.

Im not saying it will be a miracle cure to all the challenges but my dd was diagnosed with coeliac disease and malabsorption as a consequence, she was definitely deficient in some nutrients. After we changed her diet and introduced a proper supplement (well several separate ones) we did see a quite startling improvement in her irritability and anxiety symptoms. All the other symptoms with skin etc are also starting to improve and she looks much better. As I said we made the changes I talked about before but we did she a change once her body was getting what she needed.

Livelovebehappy · 11/07/2023 20:28

Heartbreaking for you OP. My sister has three children, one with Autism, and the entire family lives a miserable existence, because the child with autism rules the roost and dictates what all the family do daily. I’ve seen days out cancelled because the child knows their power and seems to try sabotage every nice thing my sister tries to do for the family. Her marriage crumbling, and her other two children in tears most days. You should do what you need to do.

MostlyBlueberryFlavoured · 11/07/2023 20:28

CandlelightGlow · 11/07/2023 19:36

You have blamed the OP for this though and not the posters; it's victim blaming the OP when she is already in a low state. I think a better approach would be to report the obviously ableist posts and challenge the more grey area ones if you have the time and resources to do so, but having a go at the OP for posting in the first place is extremely unkind and unfair.

I've reported everything. This kind of thing disgusts me as a parent of a disabled child.

MotherofGorgons · 11/07/2023 20:28

FGS will the pro-hitters shut up so OP isn't blamed for that on top of everything else!

stargirl1701 · 11/07/2023 20:29

@doubleshift I have sent a 'friend' request. Thank you.

OP posts:
IamSTARVING · 11/07/2023 20:30

doubleshift · 11/07/2023 20:22

I'll ignore the awful comment on this thread, including yours OP and tell you what helped to support me and my autistic (PDA) child - visit www.newboldhope.com/ and get support from their Facebook group

I have never ever ever given up on my child and have no respect for your attitude towards yours.

This comment is so utterly mean spirited it beggars belief.

Clearly the op is suffering a great deal, as is the other child in the house and the dh.

They have had a terrible time trying to deal with violence.

Prim, self confessed amazingness has no bearing at all on the op or her situation.

Longtimelutker2019 · 11/07/2023 20:30

ShodanLives · 11/07/2023 20:27

Please never have children.

I have 3 - all well behaved and no, I don’t smack any of them! But if one of them hit me it may be a different story and it wouldn’t happen twice let alone regularly!

VitoCorleoneOfMNMafia · 11/07/2023 20:30

Longtimelutker2019 · 11/07/2023 20:25

I’ve read them, but don’t agree fully! Shock factor may be the key, and not just excusing this behaviour and making allowances. Glad you don’t support “Screen time” as a necessity, as we all grew up without it! There was a reason kids, NT air otherwise, didn’t rule the roost in decades past and this is it! It doesn’t have to inflict harm, but shows she is NOT in control and CANT do what she wants!

Shock factor may be the key

I quite agree! You should have seen the shocked look on my mother's face after I punched her in response to her slapping me twice across the face.

Seriously, get tae fuck. All my parents hitting taught me was that I couldn't trust them and that might made right.

Scirocco · 11/07/2023 20:31

Longtimelutker2019 · 11/07/2023 20:25

I’ve read them, but don’t agree fully! Shock factor may be the key, and not just excusing this behaviour and making allowances. Glad you don’t support “Screen time” as a necessity, as we all grew up without it! There was a reason kids, NT air otherwise, didn’t rule the roost in decades past and this is it! It doesn’t have to inflict harm, but shows she is NOT in control and CANT do what she wants!

You can disagree all you want, @Longtimelutker2019 , but it's the law in Scotland. You not liking it doesn't change that.

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