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.

op I know from another thread we were both on that you live very rurally in the highlands of Scotland and your daughter attends a “wee country school”

If I were you, I’d be thinking about moving

I see parents like you all the time. My heart goes out to you. It sounds as if it is time to try something new for your sanity. I hope beyond hope that it helps you all.

@Kimchikitchen
I aim to please, thanks for your input.

Two of my dc (both are autistic) take meds for anxiety - one takes propanolol for situational anxiety and the other takes sertraline for generalised anxiety. Both of them find it helpful. Possibly worth investigating, although I think you have to see a specialist doctor, rather than just a GP (we see a specialist paediatrician, but a friend sees a psychiatrist).

OP I wanted to post to say you sound like a very caring woman at the end of her tether.
You DD is so well looked after and has seemingly everything possible to help her.

Your DD2 shouldn't have to live like this nor your husband nor you.

I will give no advice. Just another poster wishing you well and hoping you find something that works.

Maybe she just needs to rest.

My 11 year manages short 3 days a week at alternative provision, with just 40 minute tuition sessions on the other days. Lots of sensory input available as part of her alternative provision days, little in the way of “formal” learning; she is bright girl but she is recovering from burn out and it’s more important that her brain has a chance to heal and develop without the “fight or flight” that she had when trying to survive a school environment every day.

This morning she slept until 10.15am - this was unusual but I left her to it, she doesn’t sleep well generally and she had an active day.

Today she has been in her room most of the day, on her phone chilling out and spending time in sensory swing. I took her lunch in there. She engaged well with 1-1 tuition and then headed back into her room when she came back, that’s fine and some days she is more social than others.

She was a horror when in school and full of fear and anxiety, and it came out as anger and she was a risk to herself and her siblings.

We don’t have that anymore but it took months of rest and low demands, work with a psychologist, me taking advice about creating a low demand environment.. she hasn’t had a full blown “meltdown” for at least 5 weeks, and she calmed by herself and apologised afterwards for shouting at me.

She feels safe and accepted. She is safe. She was loved and accepted even when she was a monster to be around.

We work together. If she lashed out at a sibling then I’d wait until later and talk to her when calm, with a “what happened there?” Conversation where we both looked for triggers and build up to it; and talked about the things that had build up to it. She is still safe and loved and she will now apologise herself.

If she is ever nasty now then I know she is anxious and needs support. She doesn’t need a punishment and this approach has improved her behaviour over time.

But we had to strip it all back to get any kind of baseline and then put things back in her life slowly. Life is so much better for everyone.

If she was still in mainstream school then o dread to think where we all be as a family.

It truly does sound like you've tried everything op. I have HFA and mine wasn't behavioural or violent as a child but I know I was hell to live with.

Have you made enquiries into residential school with the possibility of seeing her on weekends?

*had an active day yesterday

I feel that those posters telling the OP what she NEEDS do be doing, NEED to listen to what she is saying. This is someone at the very end of her tether and who is going to do whatever she needs to do to survive, and make some kind of life for her other child.

OP - you know your child best and I have to support your view that the needs of the many have to come before the needs of the one or all of you will be broken. Good luck with it all.

@WildUnchartedWaters

Like what?

I have a counsellor. I do the work weekly.

I take my meds. I'm trying a sixth AD - Paraoxatine (sp?)

I read as much as possible - online and in books. I try to put strategies in place and see them through for 3 months minimum.

I make sure DD2 has time with DH and I alone.

I make sure DD2 has extra-curricular activities that are hers alone.

I go away for 24 hours once a season.

I go to work where I feel competent.

There's very little left of me as a person though. I am a carer, a servant. If I do that well, I am not hit or kicked or bitten. When I fail to know what precise little thing DD1 wants, I am kicked and bitten and punched and slapped.

Going by your username I suspect you have a lot of shit going on, so I suppose you’re just not thinking straight perhaps. Lecturing this mother on screens

Autism doesn’t just affect one person. It affects the whole family and household. Autism is not a gift or a super power.

@stargirl1701 have you had any support from CAMhs ? How do you feel about putting DD1 on medication. I was out on sertraline at 14. I was literally the same as your DD1. I’m 29 now and still on sertraline. It helps. I’ve also had counselling. Would DD1 accept counselling ?

im so sorry Op. it’s shit and there’s not Koch help

Many sympathies OP, it is very, very hard, and no matter how much you understand Autism and the behaviours and communication of behaviour it still boils down to a lot of walking on eggshells and the NT people in the house always having to put the ND needs first for everyone's safety regardless of feelings. I hear you. It is unfair, especially on other children in the household. And even when you do it right all the time, and you're exhausted by it 24/7, you still get the fall outs and the hitting and biting and rampaging and your child so often so angry and so distressed. And it hurts, physically and mentally, and it's so very grim to live with. I hear 'superpower' and want to do some biting and rampaging myself.

Yvonne Newbold's website and online trainings have helped us a bit.

Op!!

you live very rurally in the highlands of Scotland! And you describe the school as a “wee country school”

There will be so much more support if you… move! Has this seriously never been considered?

Have you watched There She Goes, OP? It's available on BBC iPlayer. If not, start with the recent Special and then there are two earlier series to work your way through. It is written by parents in a similar situation and I highly recommend it.

Yes. My son used Sertraline for anxiety but is now medicated for a recent diagnosis of BPD also.

@Kimchikitchen

DH's job is agricultural. He is an agronomist with his own area. It's not really a transferable job.

I know what you mean though. In Fife there is east flexi school. In Edinburgh, Montessori, in Stirling home Ed with fabulous Outdoor groups.

@Kimchikitchen
Wasn't a lecture mearly an observation and well proven fact in child research.
If you don't find my point of us, just scroll on. No need for snide comments.

My dd is also on Sertraline. It has helped even her out a lot.

You sound completely at end of your tether Op.
No one deserves to be violently attacked in their own home. It’s clearly unsafe and unsustainable.
I hope you can access some respite soon and explore residential options. If you have a breakdown then realistically she’d have to go in care.
I live near a former asylum site. Obviously we’ve come a long way from when parents were told to put children away for the best but we seem to have gone completely the other way and mothers are expected to cope with no respite and if they break it’s their fault for not trying x y or z.

I cannot imagine how hard it is for you and I sympathise with you and I am not going to call you abusive or anything like that. You are just a human being, a mum, trying to do the right thing for your daughters - both of them - and its turning into a shit show and its not of your making. Its not of anyone's making really, because the one who is making it a shit show isn't doing it deliberately.

Try the stricter approach. It might work. My boy didn't have the level of autism you are dealing with, but he could be bloody difficult at times and I was verbally and physically assaulted on a few occasions. He didn't mean it and was extremely upset about it afterwards, but I am not getting the feeling that your daughter is. But a mix of allowing him to do his own thing within some fairly strict boundaries did work enough to allow us to tick along. But I didn't have another child in the mix, so who knows what would have happened if I had.

I am so sorry for you, you do seem to have done everything you can. Is there any likelihood of you going to PILs for a couple of days when you DD2 goes? To get a bit of respite?

@Bewilderedandhurt

are you make by any chance?

Male

@SummerDawn2000

Lots of assessment appointments - we were seen (family, siblings, singly) 17 times over 12 months. Diagnosis was given and discharged the same day.

nope. all these siblings are living in fight or flight mode until they can leave or someone remembers they're there.

some of these children are basically experiencing DV from their siblings and not enough is being done to help them. parents feeling guilt isn't enough. look at all the siblings on this thread who are NC telling us how they lived in terror for 18 yrs.