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What is the hardest to cope with with your ASD child's behaviour?

(67 Posts)
Cookingwine Mon 11-Apr-16 11:59:38

Just curious really, having an ASD child, (undiagnosed until she was 10) I find it extremely hard but cannot really pinpoint what is so hard. It is frustrating trying to explain to family and friends that every little thing is difficult, like getting dressed, washed, going anywhere, everything is a battle, that can result in her losing the plot and me shouting to get her to JUST DO IT. And that she can be so anxious and stressed with NORMAL things, that she cannot keep friends as she is demanding exclusivity and gets too intense.

PhilPhilConnors Mon 11-Apr-16 12:06:18

We've got better at dealing with the day to day stuff, but it's still hard.
The thing that I find harder than anything is others not believing us, so there's no opportunity really to vent in RL, or they don't understand, and judge ds's behaviour as naughty, and us as crap parents.
And people saying "Just playing Devil's advocate......" and having to hold back from saying "No, just fuck off!".

Ineedmorepatience Mon 11-Apr-16 13:23:52

Demand avoidance is the hardest thing for me!

Dd3 is a well behaved child but she avoids any demands placed on her! I am very creative and can usually get her to do what she needs to do but sometimes it is exhausting and I feel like yelling "Just bloody do it!" I dont because I know there is no point, she isnt being a pain she just cant do stuff that she percieves to be out of her control!

I grew a think skin about what other people think a long time ago!

zzzzz Mon 11-Apr-16 14:13:53

When it all goes wrong and he shakes with the awfulness and I can't help.

Cookingwine Mon 11-Apr-16 14:22:19

The hardest is to decide if she genuinely can't help it or if she is a pain. When she is motivated I know she can overcome sensory issues or other perceived annoyances. She was invited to a birthday party on Saturday, did really well once there, but we are paying the price ever since.

PolterGoose Mon 11-Apr-16 14:34:53

When she is motivated I know she can overcome sensory issues or other perceived annoyances

That sounds like you think if she tries harder she can do better. It really doesn't work like that. Overcoming our own sense of overwhelm (even for things we want to do) takes enormous personal resources and has a huge kick back. Being able to cope for a short while doesn't mean we can sustain it.

The hardest thing for me is schools not doing what they should and having to pick up the pieces of their failures.

Cookingwine Mon 11-Apr-16 15:21:50

Polter I take your point, and intellectually I think I get it, but in the spur of the moment, I tend to forgot or refuse to remember it, because not going out, or being late, because of trivial things REALLY get me fuming. The frustration is unbelievable. What is the alternative, to allow her to stay in her bedroom in her night dress all the time? I realise that some on this forum have given up and opted for home education etc.

onlyonesock Mon 11-Apr-16 15:43:53

Home education is NOT giving up. By any stretch of the imagination.

PolterGoose Mon 11-Apr-16 15:46:15

But they aren't trivial to her. Perhaps you need to deal with your own anger and frustrations flowers

And, yes, hats off to anyone who home ed's, no way is that giving up shock

knittingwithnettles Mon 11-Apr-16 15:50:07

yes, everything takes much much longer, and you have to allow a much longer "recovery" for normal activities. I find it helps to just lower my expectations for executive functioning considerably, and practice practice practice a few core things, like putting your clothes on, finding bus pass, plate in dw. And forget a lot of the normal things a child that age might do or help with.

When I wrote ds2's EHCP I was amazed by all the things he could DO...but then again, you would expect most child of 14 to be managing those things years ago. We are thrilled he can do them, that's the difference. Find his way home from I mile away. YAAAY! Wash his hair. YAAY!

Ds is home educated btw. It is infuriating some days because you see close up how incapable he is, but then good on other levels because it really doesn't matter when he is less organised, and he has become much more masterful in many ways (partly due to lack of anxiety or time stress)

Yes, I agree it is boiled frog territory though isn't...years of having to hassle someone to do stuff

onlyonesock Mon 11-Apr-16 15:50:27

Home ed does give more flexibility but we are still in a routine because my DC are happier that way. We still have the anxiety and the difficulty leaving the house etc but some time ago I stopped battling, stopped made a world of difference to everyone.

knittingwithnettles Mon 11-Apr-16 15:56:49

I understand what you mean Wine by giving up. You meant giving up the struggle to make them do things that made them anxious, rather than giving up on your child.

FanjofortheMammaries Mon 11-Apr-16 15:59:52

When we can't understand what she wants answer she cries and yells for hours.

When she destroys and eats my stuff.

When she poos on the floor.

When she throws food on floor all the time.

When she wrestles me to get food from cupboards.

She is a handful.

PolterGoose Mon 11-Apr-16 16:00:18

A tale of not sweating the small stuff:

Ds was late to potty train and co-ordination problems coupled with a lot of accidents meant he couldn't initially wipe his bum. So we did it for him. Then he was suffering really high stress levels (school related) so it was kind to reduce expectations and make life easy, only focusing on the big priorities. As he got older he got more and more demand avoidant and resisted learning to do it himself. I rolled with it, every now and then lightly saying 'you gonna have a go?' and him replying, 'not now'. I could have pushed it, forced it and refused even. I could have withdrawn the things he likes most and made his life harder. I could have tried bribery (which never works and just raises anxiety in an already demand avoidant child). So I carried on, every now and then with a bright and breezy 'your turn?'. Then last week, at nearly 13yo, he replied 'OK, what do I do' shock So I showed him, he had a go and it was fine. We did this for 3 more times. Then he announced he knows what to do and doesn't need our help any more. No stress, no hassle. No removing the things he values most and which are also essential to his emotional well-being and mental health. No power games. He got there when he was ready.

Ineedmorepatience Mon 11-Apr-16 16:15:11

WOW! @ cooking I wish you could have walked a mile in my shoes this time last yr before you judged me for "giving up" shock hmm confused

PhilPhilConnors Mon 11-Apr-16 16:15:29

Hooray Polter! Well done your boy thanks

PhilPhilConnors Mon 11-Apr-16 16:16:22

We forced ds3 to learn, due to pressure from school. It triggered a massive anxiety reaction which lasted weeks. I'm still not sure if it was worth it.

PolterGoose Mon 11-Apr-16 16:21:23

We were lucky and ds never went at school. In fact he still won't even wee at school...

Looking back the hardest to deal with emotionally was the suicidal stuff when he was 5, 6 and beyond. The violence was/is hard but the underpinning anxiety is a lot harder. And I can deal with the not wanting to go out as I don't like going out either.

FanjofortheMammaries Mon 11-Apr-16 16:24:04

I see your DD is quite different to mine.

But I agree with others that thinking she can help her behaviour if she just tries harder is the wrong approach.

zzzzz Mon 11-Apr-16 16:24:15

I realise that some on this forum have given up and opted for home education etc.

From someone who has just explained how utterly frustrating they find helping their child to get dressed perhaps you'd like to rethink or rephrase that because you are sounding like a twat.

But then home educating for 3 years has allowed my child to learn functional language and many other life changing skills like how to read and do basic maths and how to manage without melting anxiety. angry

Fanjo nice to see you here brew
Polt I have to keep reminding myself of development like that, it is the best kind. Well done for being what he needs.

FanjofortheMammaries Mon 11-Apr-16 16:28:51

Thanks zzz..nice to be here smile

FanjofortheMammaries Mon 11-Apr-16 16:29:47

Am massively impressed by people who manage to home educate FWIW. It's not the giving up option, far from it.

soapboxqueen Mon 11-Apr-16 16:32:52

Honestly, and this is going to sound bizarre, but when he hits me on the small of my back. It really hurts and it makes me really cross. I can deal with the pda, the toileting, painting with poo, the outbursts, meltdowns, violence, name calling etc etc etc but hitting may there really grinds my gears.

FanjofortheMammaries Mon 11-Apr-16 16:34:20

It's funny how some things just seem worse.

Room caked in poo I can handle. My makeup and jewellery chewed up. .gets to me.

PhilPhilConnors Mon 11-Apr-16 16:36:28

I struggle with the suicidal stuff, find it very frightening.

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