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Reposting from chat. Please help!

253 replies

Faverolles · 10/01/2014 22:43

Ds2 is 8, being assessed for possible ASD. He's fine at school, but violent and aggressive at home.
We have some times when things are relatively calm, and we feel that we know what we're doing, then we have weeks like this week, which are absolute hell on earth, and drive us to near breaking point.
I don't know if it's a normal back to school thing, but every evening this week, we've (all the rest of the family - me, dh, ds1, dd and ds3) been threatened, punched, slapped, bitten, spat at, sworn at, insulted constantly.
I can't cope. I know he'll calm down a bit at some point, we'll still have this behaviour, but not as intensely. But for now, the whole family is struggling.
We've explained to the older dc (13 and 11) that they need to back off from ds2, when he's feeling angry, he needs space.
Ds1 in particular seems to think that we are favouring ds2 because he gets more time with us, but this week he has only had more time because he has been wound up to the point of being a danger to himself and the others, and one of us has to help him calm down (he usually ends up sobbing that we should just kill him) and basically supervise him.
Ds1 cannot resist winding him up, he doesn't seem able to back off, so we have more outbursts than we should probably have.
I don't want ds1 and dd to feel responsible, but I want them to understand that how they react to him makes a huge difference to the severity of ds2's behaviour - is this unreasonable of me to expect this? (Really, I genuinely want to know!)

Dh and I are relatively new to this, it's only been a few months that we have allowed ourselves to see that there is a problem, and not a naughty child/crap parent situation.
There isn't really anyone in RL who gets what's going on, mostly they think we're soft on him(we're not), or suggest that we get really cross with him (like we don't do that already, but it doesn't work and makes the situation worse)
He has been referred to CAMHS, but that could take months.

We have noticed that we can do practical things that have helped - putting a tent over his bed, giving him opportunities to tell us how he's feeling, and do something calm with him if he's feeling angry, not taking him to the supermarket etc.

This week is off the wall though. Please, please tell me what else I can do to help him. He's such a lovely little boy when he's not angry.

^ I posted the above in chat, I had a thread in here a while ago, but I've lost it.
I really need practical advice. I feel like our family could break up over this, and I don't want that to happen.

OP posts:
PolterGoose · 23/04/2014 15:53

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Faver0lles · 25/04/2014 14:53

Saw the autism outreach lady this morning. I was worried she would say that she'd observed ds and there was nothing wrong and we were being ridiculous.

She feels he is hypo and hyper sensitive to some things (noise in his case) at the same time, which apparently can be very difficult to deal with.
School are doing a sensory audit, we have to fill in a questionnaire.

It would explain why he tries to drown out our noise with his own noise.

The lady felt it would be best if we could arrange childcare for the other dc so that ds gets an hour after school in a quiet, empty house, to unwind.
I have no idea how this can possibly be put into place.
I've arranged a childminder to have little ds on a Monday and Thursday after school. I need to see if family could help out, but so far nothing is forthcoming.
Going to the field every evening, whether he stays at home or not, seems to make everything chaotic. I'm thinking of suggesting building a large pen that I can shut them into before I pick up ds, so evenings are at home are less chaotic, but dh is not going for this, as it feels wrong to shut the chickens up when they could still have hours free ranging. I think ds's needs trumps the needs of the chickens, personally Hmm

They've advised us to let ds know that he doesn't need to make eye contact if he doesn't want to, and he doesn't need to have anyone hug/kiss him if he doesn't want it. My dsis has suggested that actually we should be making him do these things, otherwise he won't be "normal" when he's older, and will struggle to get a job, a girlfriend, friends, a normal life etc. I feel very confused tbh. My gut instinct is to follow expert advice, but what if by bypassing social norms we are making his future more unstable and difficult?

The impression I got from the outreach lady is that we need to acknowledge how stressful school and other everyday situations are for ds, and try to take away as many of these stresses as we can (eg. Asking family not to hug or touch him - which may go down like a lead balloon), and making sure he can be as comfortable in himself as possible.

Anyway, that was quite an essay, and I'll probably add to it later on Blush

PolterGoose · 25/04/2014 16:41

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Faver0lles · 25/04/2014 17:02

Dh does sometimes doing it, but someone leaving always seems to wreck any calm that we have managed to scrape together!

Re. Eye contact, with familiar people, he is pretty good at looking at people and smiling etc. certain people he finds it very difficult.
Checking his audience is a good idea, I'll have a chat with him.

I know he is uncomfortable hugging, and will ask if he would prefer to shake hands instead.

Faver0lles · 28/04/2014 12:46

In the dla form, in the difficulty hearing section, although he can hear fine, he has sensory issues with sound, should I write these down?

Also, difficulty communicating. At home, he tends to be zoned out a lot, so communicating can be difficult, although there's no sign language etc. Does this go in, or am I clutching at straws?

PolterGoose · 28/04/2014 13:57

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Faver0lles · 28/04/2014 14:02

Thanks Thanks

As I'm filling this in, my mantra is "What would PolterGoose do?"
I even said this to dh once. He looked at me like Hmm. :o

PolterGoose · 28/04/2014 14:03

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Faver0lles · 29/04/2014 08:22

How many letters of support should I be sending? The HT is happy to write one. I could ask a sister or two (or three) - one sister is a medical consultant - would that add more weight?

Will they send an independent dr? The cerebra guide says yes, from what I can gather on here, no Confused

PolterGoose · 29/04/2014 08:32

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Fav · 01/05/2014 14:41

Hello :)
Hope you and your ds are both ok this week.

I have a couple more questions abou the --dreaded- dla form, if that's ok?

I have managed to put the video I took on Vimeo, should I put a link to it on the form in case they want to see evidence?

There is a section for extra info about care, what sort of thing is relevant? I feel like I've put everything down in the right places, should this be a summary of his care, or something else?

Near the end, there is a whole page for extra information (tell us anything else you think we should know about the child's claim). What sort of thing should go here? Do I write about autism outreach involvement? Do I need to say why we want to claim dla?
Really not sure what to put!

Have had a rough week, school trip and lots of stress, nearly the weekend though, thank God!

Thanks again for all your help, I really appreciate it Thanks

PolterGoose · 01/05/2014 15:02

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Fav · 15/05/2014 13:45

Have completely finished the form now. I've got tomorrow morning child free, so I'm going to go through it all then post it.
I've had to get several grips this last few weeks, as filling the form in has really highlighted how much ds has changed.
He was such a happy, confident little thing, by far the easiest of our dc. The change in him was overnight, and it's quite sad to remember how he was :(

He's behaving quite well this week, but I think it's because ds1 is kicking off about something (no idea what), ds2 finds the constant nastiness unsettling, so is being unusually calm (although I don't think he is on the inside!). I'll expect a blow out soon.

He rarely has times when we can actually talk to him, he'll tell us things, demand things etc, but we rarely get to speak to "him" if you see what I mean?
The last time was about 6 weeks ago, and he told me what was stressing him out at school.
This morning, he was very calm, and asked if, when he's older, he would go to prison or get into trouble if he killed himself. He hates his teacher (he wants to kill her), he generally has friends, but doesn't get rough and tumble, so on a daily basis there are one or two boys who he hates and wants to kill .
So the only times he is himself/lucid (not quite sure how to put it), it's to tell me how miserable he is, and I don't know how to help him.
He has asked to be home schooled, but right now, he does have friends and has fun at school with them.
I don't think changing schools is the answer, as he takes so long to be happy with new children his age, I think it would really knock him.

I'm going to talk to the GP and the SENCO about the conversation we had this morning, if nothing else it'll be a paper trail and on record that he is miserable.

Are you going through transition with your ds yet? How's he coping?

Fav · 15/05/2014 13:46

Oh, and thank you so much for answering all my stupid questions about the form, it really helped!
Wine Thanks

PolterGoose · 15/05/2014 14:21

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Fav · 15/05/2014 16:21

No, we're up in North Yorkshire.

I'm quite nervous about the form going. I suppose that's normal though!

PolterGoose · 15/05/2014 16:24

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Fav · 15/05/2014 21:12

We expected an explosion, but it still managed to take us by surprise!

He hates himself and wants to die. Every time he steps into the classroom and sees his teacher, he hates himself more and wants to die more.
When he grows up he's going to kill her (he says, I hope he doesn't!)
He wants to be homeschooled for the next few weeks so he doesn't have to see her again.

Is this normal for a bad day? Should I be taking this seriously, or try to jolly him along (although tonight there has been nothing jolly at all)

No idea how to make him feel better.

PolterGoose · 15/05/2014 21:26

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Fav · 15/05/2014 21:55

Is that the five point scale?
Birds sounds like a really good idea - do not release the cassowary :o

Might try the same with reptiles.

I tried the problem solving thing, and instead of writing "I will kill mrs x" he then changed it to " mrs x = POO" - not brilliant, but a damn sight better than killing her :)
He's settled now, and a bit happier. I suspect SATS week hasn't helped.
If he's still feeling like this tomorrow, I think I'll keep him at home.

Thanks again x

PolterGoose · 15/05/2014 22:00

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Fav · 15/05/2014 22:15

Yes!
Do you think you get better at dealing with it as time goes on, or do fresh challenges come up to keep you on your toes?
Some days I think I've cracked it and feel on top of the world. I think he senses this and puts me firmly back in my place (the floundering slave) the day after :o

We drove through town today and saw a man walking a pug. Ds said he didn't like pugs, I agreed and said they weren't my cup of tea - he looked shocked and asked why I would put a dog in a cup of tea :o.

PolterGoose · 15/05/2014 22:19

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Fav · 15/05/2014 22:28

That's really good to hear :)

Fav · 16/05/2014 11:03

Have just spoken to the GP this morning and ended up sobbing at him Blush
A CAMHS referral has gone through. He is ringing the consultant to ask for an urgent appointment.
He also said that we can ring any time and see a dr very quickly if we need to. Not sure what it would do, but it's reassuring to know.

DLA is now sealed and ready to post. A full copy of it is sealed and put away.
If I didn't have to drive anywhere I'd be having Wine right now. As it is I'll make do with a melted bag of maltesers I found in the car :)