Ashamed to admit - I am THIS close to running away

[Note2Self]

I don't know where to start, really. I am absolutely desperate

My DS (7) has AS and exhibits extremely challenging behaviour a lot of the time. I have had hideous days and weeks in the past, but today I am at my absolute wit's end. I can't stop crying. He is just so, so difficult and uncontrollable. I feel I have exhausted every option there is with him - he so much support and input froma loving gdamily, a great specialist unit within a school and oputside professionals - and yet nothing works, nothing changes and all I get is constant defiance and abuse from him. I feel devastated, to be honest. I see this bright, funny little boy just pissing his life away by being completely unable to co-operate with anyone or anything on any level. And I feel like my life is fucked, too. I feel so isolated, I can hardly begin to describe.

Where have I gone so, so wrong?

I have had to call my mum just now and beg her to take him away for a few hours. I feela complete failure. I am sitting here in floods of tears and feel like running away.

I don't even know what I am asking for.

That shoudl read that he has so much support from a loving family

Sounds like you need a break, is your Mum coming?
Do you have a Parent Support group in your area?

Thanks Sauv.

My mum just took DS and my younger DD to get house for a bit. She is worried now, I think. I hate stressing her out, too . The thing is, I do get a break. For example, yesterday DH had them both all day. The problem is, I can barely control him and that problem doesnt go away, no matter how much time off I get.

I attend a weekly support group for parents of kids with Autism. It does help enormously having somewhere to let off steam, but it can't change our lives and the way DS is

I have stopped crying a bit, now, though, but I feel sick in the pit of my stomach I just cannot see a way forward here. Every day is a battle.

I'm sorry to hear that, it sounds bloody hard work.
Have you spoken to any medical proffessionals?
DS was vile at that age and tried to strangle me once. I went to the GP and he was referred to a Behavioural Psychologist and she worked on Anger Management with him, it did help.

I was going to suggest what SauvignonBlanche said about a Behavioural Psychologist.

My ds was difficult to the point that I couldn't leave the house; although he was only 3/4 & small enough to lug around I was either pregnant or pregnant with a small baby. Largely because of a huge number of phobias but he would also be extremely aggressive & self harm at worst. We were referred to CAMHS who offered some behavioural support but nowhere near the intensity that we needed, in the end we found a behaviourist (ABA consultant) not for a programme but to do deal wiith the behaviours & phobias underlying them. To start with he came weekly/fortnightly then monthly, a year down the line life is completely different for us - in many ways we do have a pretty normal life (I also have one excellent/very experienced tutor who takes ds out for 6 hours a week which is vital to my mental health).

I felt exactly the same btw, somewhere between wanting to run away or just throw myself of a bridge :(

How would I go about finding a Behavioural Psychologist/ i would bite hands off to get anger management therapy for him

DS saw a Psychotherapist at CAMHS once a week for six months last year but I found it very wooly and we saw absolutely no change in his behaviour at all. I would love to get some more intensive support for him.

thanks for both your replies, btw. Really appreciate it. I have stopped crying now but feel awful. House is a tip and have so much to do today, but am sitting her eon the sofa unable to move.

we have used behavioural consultants to good effect too.

dd1 used to be anxious to the extreme, and as a knock-on was very demanding and controlling. she has been 'doing' ABA since she was 3, and we have seen vast improvements in behaviour. she is at an ABA school, as her behaviours need to be under control before she can leanr anything.

dd2 has also benfitted - she was controlling to the extreme. likely PDA candidate. and is now doing ok. still hs issues, but is much happier and more relaxed.

you can google for ABA consultants - there are a lot of them out there. some good, some not so good. might be worth searching on here to see if others recommned them, and ask any questions you might have.

I hope you can find sometihng which helps. I have been where you are - just wanting to leave it all - and I sympathise.

Hi I completely understand where you are coming from. It can't be easy not to be in control of the situation and to continuously try without seeing any progress. I think sometimes that if I was given a timeline as to when my ds would start making progress I could live with all the set backs that we have at the moment. But with perseverance they progress in their own time (heard it so much from hv that it hurts)... You seem to be a loving mum who is feeling frustrated like so many of us feel every now and then. Do talk to someone when you feel this way and you will see you're not alone. I have also read about ABA and it looks very promising. My reason not to have tried it yet is that I'm thinking of giving up work to stay home for my son so finances won't allow but I have started buying a few reccommended books and will definitely read about it.

Do you think he might be at the point where a residential school would be right for him?

Or could you get any respite care from SS? (or whoever it is that grudgingly allocates it)

Thanks Roni.

I just feel so overwhelmed. For the past four years, since his issues started to become apparent, I have just soldiered on. DH and I both have. We have taken everything in our stride, always fought our little boy's corner, never been self pitying or complaining. We have been through the whole exhausting process of getting a diagnosis, then a Statement, then finding him a specialist school place. Every weekend and holiday is devoted to him and his needs. I have found a good network of other parents of children with ASD and he goes to some ASD-friendly activities. We try so, so hard with him.

I feel so ashamed to admit it, but today, when he was being foul - just so angry and full of resentment - I suddenly imagined a life with a NT child instead of him. I feel like the world;'s worst mother for saying that and am crying now . But I just feel so exhausted with it all. I look forward to weekends, but by Sunday eve I am a wreck.

Thanks all. Gonna go now and have a pity party for myself

ds' psychologist at CAHMS mentioned it to us but couldn't recommend anyone - in the end I just googled behaviour/autism/psychology etc & came up with some mumsnet pages discussing ABA (& I've been lurking ever since! I haven't found any other UK chat boards that even mention ABA).

We went with one of the consultants people talk about on here a lot - pretty much because he was the first one who would contemplate working with us on such an ad hoc basis & without the comitting to a full programme and we were absolutely desperate for help. It has worked really well for us - now we're doing emotional regulation work & are starting more formal education programme with his guidance (nowhere near 40 hours a week or even half that time though).

Didn't want to read and run. Take it easy today and do smth for yourself- go out for a walk, have a piece of cake, read a magazine- anything that you like. You are a good mum, it's just you are tired and stressed out. Life will be better tomorrow- and meanwhile i'm sending you unmumsnetty hug.

:( it is so hard, utterly exhausting. What prompted me to start posting was a I-don't-want-to-get-out-of bed-it-isn't-fair-why-me-I-can't-stop-crying day.

I could not cope without the help I get (I didn't cope at all).

Hi there note, I have a Dd with ASD and she can be very controlling. We are in a good phase at the moment but have been through some bad ones.

I just wanted to say that it is very hard work and exhausting and because you are a good mum you won't give up, but you have to try to be kind to yourself. You really need to try to choose your battles and let go of things that don't matter.

It doesn't matter about the house, it is a tip today and will be a tip tomorrow, so what. . Mine is a tip all the time and my kids don't even notice.

I know you're right@needalife. But I feel like I am losing a grip of things. The house is always a state, then I'll spend a whole day tidying and cleaning and it just slides again, which means we don't have people over and I feel even more isolated .

DH is working today and I had this [stupid] plan today that I was going to take the kids to the park in the morning, then come home and they could watch a film and cosy up while I did housework, washed uniforms, maybe caught up on a bit of work I need to do. As it is, we had a morning of DH tantrumming, I made an SOS call to my mum and have been in tears all day .

Oh I know I am being a misery guts, but I just want a peaceful life

You're not being a misery guts - just human!
Being the mother of an child with Autism does not automatically turn you into a saint or Wonder Woman.

Challenging behaviour foundation website is worth a look. I think Camhs offered you the wrong intervention last year. Child psychotherapy is great for the right kid but that wouldnt include many 6 year olds with AS. No matter how high their verbal IQ appears to be.

With 6 months of weekly support from a CAMHS clinical psychologist or a learning disability nurse, you'd probably be in a different situation now. Officially the NHS doesn't do ABA... but the underlying principles of behaviour modification really aren't different. Google for functional behaviour analysis, ABC charts, selective reinforcement, shaping, etc.

And one hopeful thought for you to research: might this actually be an 'extinction burst'? Behaviour you've been beavering away to sort out reappears worse than ever, just before vanishing for good.

My DS1 was like this last year. For him it was mostly a means of reducing extreme anxiety. Once I twigged his motivation, I could make a start on tackling it, by trying to de-stress him in other ways. And it worked.

Took the best part of a year to get to where we are now, though there was enough improvement within a term to make life at home much safer. There are still problems, but I don't currently have the 'Please please God don't let that rustle be him waking up' as my first thought of the morning.

Oh God, I hope you're right @mariamagdalena. Extinction burst - what a fabulous phrase!

I will have a look at all you have mentioned. I am desperate now. I will take my last savings out to pay for it if it will have some effect.

The difficulty with the CAMHS psychotherapy was that it was that play-based therapy (excuse my ignorance on exact terms) where the psych talked to DS through play about types of behaviour in different situations, what would be the right thing to do here, how could you deal with this situation? etc. It is the same with the social stories the SALT at his school uses. 'here is what we 6should do' etc. And DS is great at knowing what he should do. He is very bright, very verbal, full of imagination. But he cannot control his emotions at all in the actual^ situations. He is like a 2 yr old in that respect. So there has to be some other sort of intervention with him. God knows what.

I know nothing about ABA, really. I have read a bit about it, and there is a autism specialist school that uses ABA near us, but I can't imagine it in pracice. What does it entail?

Thanks Sauv and all. It is wonderful to have people I can talk to about this

I know some people whose asd kids are on a tiny dose of medication for this. Camhs are quite likely to have more to offer. Keep hassling them.

Oh and maybe the play therapy and social stories made it worse. Though they might be of benefit some years down the line if he retains the learning once he starts to control the behaviour.

But for now, the help he's had means he intellectually understands how he should behave but still can't actually get any closer to doing it. So add frustration, shame and confusion to the previous emotional overload.

A few years ago I felt quite similarly to you. I kept up a great front outside but at home was falling apart. My ds was being aggressive and I felt completely drained and depressed. For us (and I know this isn't the answer for all) ds starting on medication made a massive difference. I mention it so you know there are other options, if behavioural approaches don't work for you. I had no idea at the time that medication was even available to help autistic children until our paed said that ds was the most anxious ASD child she had ever seen and referred him to a clinical pyschiatrist. Ds started taking Risperidone and he has become clamer, is rarely aggressive and is much more loving.

you poor thing, nothing to add except a big hug x