At the end of my rope - any advice?

[KarenThirl]

I?m having such a crappy time at the moment and could do with leaning on a few friendly shoulders. J had a wonderful few days at the beginning of this week and we were all astonished at how well-behaved, calm and in control he was. We had visitors here from the US and they were surprised at how lovely he was. This lasted until Tuesday and I?d foolishly begun to think that things were beginning to change.

Then came Wednesday ... I?ve no idea what caused the change but it could have been the carton of crappy squash he had after swimming on Weds morning ? he?s never reacted that way in the past to additives but it seems more than a coincidence that within an hour he was the raving beast from hell with pointed horns and spitting venom. Since then it?s been hell on wheels, getting progressively worse as time?s gone on. His anger is beyond anything I?ve ever witnessed of him; yesterday I couldn?t speak to him at all without setting off a tantrum and it was taking a good half hour to bring him back down again, then just a word would set him away again. He?s become more aggressive too, hitting me and hugging me at the same time because he doesn?t know whether he wants me with him or not, and this morning he actually pinned me against the kitchen cupboards and lashed out at me. He?s only six FGS so how am I going to cope with this by the time he?s ten? He?s already stronger than I am.

I?m physically and emotionally drained. My ME has worsened over the course of this Easter holiday with day to day managing of J and I?m both desperate to get him back to school on Monday so that I can start recuperating, and at the same time worried sick that he?s going to start lashing out in anger there as well. And tonight I have to go to football with him and have a word with the coach there to try and explain his behaviour before he gets kicked out.

Dh is a waste of space, tbh. I?m tearing myself apart trying to do the right thing by J, trying out new strategies and giving him encouragement, in addition to coordinating the assessment and meeting with SENCO, teachers etc, but all dh can do is shout at him. At teatime yesterday J went off into an unprovoked tantrum and I left the table to try and calm him, dh started raging at me that I shouldn?t let the spiteful and selfish little horror dictate my life like that and I should come back and eat and just let him burn himself out in his room. Except he doesn?t burn himself out, he just cranks up more and more because he doesn?t know how to calm down by himself, he needs hugs and a gentle voice and eventually he can settle with my help. I did go back and try to eat but he threw the laundry basket over the banister and downstairs ? God knows what else he?d have thrown if I hadn?t gone back to him. Dh doesn?t realise that J can?t learn these things by himself and needs our help to understand. He promised to accept the diagnosis but I think all that means is he?ll stop arguing with me that there?s nothing wrong with J ? he doesn?t seem to understand that he now has to incorporate J?s condition into his life and accept that he has an autistic son. I feel like I?m left to parent the two of them, alone and without help, and it shouldn?t be like that.

So I?m just having a moan, trying to work out what to do/try next, trying to find out what kicked off this current nightmare. Has anyone ever heard of too much exercise setting off this kind of behaviour? One of J?s triggers is over-excitement and he?s had three swimming sessions during this time, in a crowded pool with the fun floats out etc. Expert opinion alway seems to suggest exercise as a way of burning out rage but this seems to have exacerbated things for J. Any other suggestions gratefully received.

Thanks for listening if you?ve got this far.

Sorry no help, just hugs here too, I hope someone comes along soon, who can assist.

Hi Karen, sorry to hear you're having a difficult time . It does seem to be that a lot of fathers have problems accepting what's going on with their ASD kids.

I don't have much time to write now, but one thing leapt out at me from your post - do you think it's possible that J is reacting to the chlorine in the swimming pool? Just a thought...

Oh poor you Karen! I totally understand where you are coming from and I am sure that your post just poured out easily from your fingertips (I know it does when I post one like this).

I have a ds that sounds the same as J - except he's 7.5 and 4'2" tall. Although is only very light in weight - not an ounce of fat on him, he is physically very strong. My ds lashes out - usually at me and usually because he can't have his own way. The attacks are horrendous and I am left, like you, drained physically and mentally. I really hate to think of anyone else going through it too.

My xh would not accept there was anything untoward with my ds even as he got older and when he was dx with ADHD and AS, he still did not seem to accept it/accomodate it. However I only found out more recently that his girlfriend's sister is very knowledgeable about SN and they have spoken quite a bit. The reason I kicked him out was because it was looking like two babies, not one!

My ds does have some "good" days where sometimes even I question his dx, and then other days he is ranting and raving, lashing out, shouting, spitting, hitting, biting and headbutting and it feels like it's back to square one.

The suggestion from Beccaboo, could be something to look into - unless it was the "crappy" drink, they seem to have so many bloody colours and e numbers in.

Just really wanted you to know you are not alone. It must be infuriating that your dh is being this way, it seems he is only making your and J's life harder. As you say, it is great that he has accepted the dx but now he has to continue the same thinking to the future. Is there anyone else you know who could talk to him - a male with an autistic child perhaps?

Thinking of you. x

Karen, I wish I had loads of advice I could offer but all I can give is sympathy I'm afraid.
My ds also works himself up to a right temper, and he's so incredibly quick tempered, little things can set him off, I'm always treading carefully.
One thing though, you mentioned about over excitement can trigger off bad behaviour. The same thing applies to my ds. If he gets over-stimulated whether its noise, people or just too many activities then I find it really hard to control him. It just gets too much for him, and at times he becomes so stressed it's really painful to watch. Other times he can manage situations well, and like yourself I can't fathom out why he reacts differently on different days.
I'm sorry that you have to cope with all of this on your own.

Thanks for your supportive replies, ladies. I've had a couple of hours off this afternoon while J went to granny's - he's been fine while there, largely because he'd begun to calm down already but also because he just sat in front of the telly and watched a Harry Potter film. Whatever, he's settled down and I'm grateful for it, and I've had a chance to calm down too.

Beccaboo, I'd wondered myself about the chlorine. J drinks gallons of it and is always having to get out for the loo, so it's possible that he's taken in quite a lot over the three days. It seems that although I'd thought I was doing a very positive thing by taking him swimming three days in a row, it might not have been such a good idea after all. Will stick to once a week in future, lesson learned. Yes, McW, our boys do sound very similar!

One good thing has come of this - I mentioned the squash to Granny and said no more Fruit Shoot or crap foods from now on. She likes to give him special treats and I've trodden on eggshells for years about what she feeds him (he goes for tea on Fridays), so this incident has raised an opportunity to ban all the undesirables, even though I'm not certain it was the squash that did it.

I'm trying to go easy on dh. I've known there was something up with J for four years and dh has always been in denial, so he's got a lot of catching up to do. It's only a month since we got the provisional dx so I guess I shouldn't rush him too much. Anyway, it's not in J's best interests if we're fighting as well.

Some good news though - I've just had a chat with J's football coach and informed him of the dx. He said he wasn't surprised and thought ADHD or something similar. It turns out that not only is this chap an excellent football coach, he's also a youth justice lawyer and has spent several years working on American summer camps with all sorts of kids with behaviour problems, and while he admits that he doesn't know AS inside out, he's more than happy for me to pass on info on how to manage AS kids generally and J specifically. Also, he'll pass it on to any future coach J has while at the club. AND ... they have a Karate club on Sunday afternoons, age range from 6+. I'll be popping in this weekend to find out more.

Thanks again for your support and encouragement (and hugs) to help me over this blip. I'm sure there will be many more to come but at least this one's over with!

KarenThirl, so sorry you're having such a rough time at the moment. But glad you've had a more positive day- football coach sounds great! . As others have posted before, I think we (and our children) go through such ups and downs. Here's hoping you go through an 'up' phase soon. And I know what you mean about your dh. It's taken my dh a long, long time to get his head round the situation

Thanks for that Christie. The link didn't work but I'll look it up on the NAS site.

Agree with Christie that finding out more about managing behaviour will help. Have you thought about going on the NAS program called Help! or Earlybird Plus? I'm not sure which one would be most appropriate or, of course, if they're available in your area, but if you could get on to one and take your DH with you I'm sure it would help. What about other help with his behaviour? e.g. psychologist? If you can find a session locally, you could also try trampolining as it is proven to reduce anxiety/tension. Lastly, you could consider medication, even in the short term. It could help him (and you) immensely. Don't dismiss it, consider it.

Hi Davros, and thanks for your suggestions. I looked into the NAS Help courses a while back but they don't do them in my area, the closest one is in Dumfries and would be too far to travel. He's too old for Earlybird too.

I've read quite a bit about behaviour management and anger in particular and pulled a few ideas together for myself, and generally they do seem to work. I think this week has simply been a combination of negative factors that triggered a bad few days, but it's calmed down now. I expect I'll learn over time which situations to avoid and which can help.

I'm visiting a Karate club this afternoon with a view to enrolling him there. I've heard that martial arts are quite useful in teaching AS kids how to manage their aggression. Anyone had any experience with this?