To be done with autism

[stargirl1701]

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.

On the basis of this thread op

I can’t get my head around your child thriving in a mainstream school. And to be Frank, I imagine her peers are also negatively impacted

a school with all those props op - it just indicates they have the budget but not the expertise

@DrSbaitso

My kids do not have autism

Then why are you talking?

Because this is an open forum to allow input if you wish to contribute.
I might not have an abusive partner, have anxiety etc. but this does notean I can't contribute to theads on these topics.
My contribution to this thread was that most kids act up after prolonged screentime and I had noticed this within my family.
Sorry it hit a nerve with you but your reaction is not very dignified.

Only sympathy for you, OP.

I can't imagine what it's like. In your shoes, I believe I would be trying this approach too.

If your dd is happiest outside could you turn over some garden space to her?
Ds used to dig loads, and chop wood and make things (mud ovens were a favourite at one point).
And if she’s motivated to work hard at cubs please don’t stop her doing that, she needs to have a sense of achievement.

Is DH supportive? Is he on board with trying strategies to help?

Do you feel you're nearing a breakdown again? I imagine anyone dealing with your situation would struggle immensely, I struggle with mine.

You're having a shit week. It's not the first, and it won't be the last. No judgment here, you will all get through this.

Some things we do in my family that helps -

We “tag team”

DH will take our older son (non autistic)out so they enjoy time together that isn’t stressful.

I will make time too with oldest so he doesn’t lose out on spending time with us.

In the summer holidays my oldest has lots of friends and mums who take him out for the day - we can’t go out much unfortunately so I do know he’s at least getting out and having fun.

Youngest who is autistic thrives being outside, he has a little swimming pool, a sensory shed with bean bags and is happiest running around in the garden.

Have you accessed any autistic society events and activities? They normally run free events in the summer holidays.

Could you request overnight respite? My son has just got to the top of the list and will receive 24 overnights per year - it’s something and will give us a break.

Honestly OP despite what everyone says sometimes it can't be fixed. No matter how many adaptations etc etc you try.
We are both ND and have a lot of it in the family.
After a certain point you have to live your life. And protect your younger child
Just the way it is.
If your autistic DD isn't melting down then she's fine, despite posters complaining you are isolating her or whatever.
Your younger child doesn't deserve this.

She does not meet the criteria for the only special school in the LA.

what lA? Because on this basis of what you have written here - it definitely would in my LA and neighbouring ones

I think she’s not on the right medication or right dosage. My oldest son has such bad ADHD he was misdiagnosed with bipolar disorder. It took years to get him on the right medication but once it was right it completely changed his life.

I have tried the ABC method I would use at work.

Antecedent
Behaviour
Consequence

All written up for 3 months.

So you feel overwhelmed, unable to cope and lashing out trying to force people to behaviour how you want.

But you expect more of your disabled child?

You need to manage her environment, preempt situations , don't expect more than she is capable of, ensure she has stuff to help stabilise her, don't take those things away. Have routine and structure, don't throw the unexpected at her.

Go down the authoritve route and you will end up with a traumatised adult. There's a great page on Facebook called ask the autistic adults. They give great advice and support.

Hi OP, I get it I really do, parent of ASD teen, you have done so much for your child, but yes we all have a breaking point. It is so draining. I am currently suffering from carer burnout, you may identify with this.
I realised when I literally had panic attack when Ithe TV remote was broken as I couldn’t face the imminent fall out from DS ( who has to control the TV)It just wears you out mentally and physically .

I just want to say that I feel for you, OP. No "have you tried", no "You're cruel", no whataboutery, just that I feel for you. You've been dealt a shit hand and have tried to play it as best as you can.

I’m sorry OP, it’s so incredibly hard & isolating.

@Bewilderedandhurt
i imagine you often leave people feeling like that on the basis of your contribution to this thread.

@MobMoll

Medication? The only meds are melatonin for sleep and 2 for incontinence.

What medication is for autism? In children?

You are not a cruel or abusive parent.
No one can understand unless they're living your life.

But why? That's like punishing her for having autism.
As I said in the rest of my post, strip this down right back. First step is get support and help for YOU. Start there.

@SuperFi

I had one at work when a bird made the same noise she does at the start of a meltdown.

As someone who’s also had a breakdown due to struggling with a child’s behaviour you have my heartfelt sympathies. Give it a go, it May have a small positive impact in some way. If not maybe there’s a hybrid that may work better. I agree - a less cosy regime may help effect a change, if not for her then the rest of your family 💐

Write notes every half hour?

Sorry, I'm not having a good day, and DS has been dysregulated for days which is getting to me as he's constantly bouncing off me, poking me, patting me until I want to scream (I don't, or not so anyone can hear, anyway). But notes every half an hour? I can see how it would be helpful, but how do you cope with that? I just can't take on another thing to do. Everything is working, or appointments, or managing DS in some way.

No advice but sympathy.

Hopefully you’ll settle into a new routine that helps both your dd’s. Sometimes it’s difficult to see the wood from the trees. Step back and look again as to how you can change your reactions. Maybe a bit of love bombing and faking it till you make it, just to try to find some of the love and positives that are just so hard to see at the moment in the midst of all the chaos and despair.

If your autistic DD isn't melting down then she's fine, despite posters complaining you are isolating her or whatever.

Yes! It may feel like isolation, but it’s quite possibly exactly what she needs!

Let her be. If she wants to eat in her room let her, as long as she’s always given the option to be with you all.

I go stir crazy if I don’t have enough time on my own, I never feel isolated or lonely!

I know how tough this is from experience. Take a break. You’ve got compassion fatigue. There’s no shame. Rest for a bit. You need emotional, mental and physical replishment to be able to help again. Reach out to social services and see if they can give respite. Sometimes they find support when people get very desperate.

Honestly Op, there will come a time when you look back at these achievements and what went into making it happen with great happiness. For my now adult son life was about steam trains and now that he’s too unwell to travel I sit and look back to when he could and I remember the steam trains we’ve been on and how my love of steam travel grew from his love of it.