Sunday, November 4, 2012

Meltdown after meltdown


I know I said that I would stop writing so much about my son with aspergers and my difficulty in coping with his behaviour, but we both need help and I'm almost out of ideas.  The State therapist that he likes and respects is busy, and he is refusing to go to any of the private services that I've found.   He won't take any advice: "It doesn't work, Mum".  He won't write about his feelings as asked by one therapist.  So I am, but he won't even tell me how he feels, so I'm having to write about each meltdown and guess how he is feeling.  Another activity that has kept me very busy during the last week.

He won't follow any other advice either now.  He's stopped using the trampoline, he won't push his sister's wheelchair any more, he didn't even go to tennis last week - the one sport he claims to like.

Yet he is asking for help.  He says he can't control his anger.  I know that he can't control how he feels, but surely even a child can control how they respond to their feelings?

If you're a regular reader you know that I am stressed to the max about him refusing to go to sleep on his own and I have been asking over and over why he is so afraid.  He is still blaming it on an episode of Supernatural that he watched with his sister 18 months ago that featured a 'wraith' that knocks on windows before coming in.  We live in an old house and I can understand why he can easily think that he hears knocks on the windows at night.  But he's never seen me wielding my light sabre against marauding wraiths in all the hours that I have sat in his room.  So why is he still afraid?  Or is he?

Yesterday I tried bribery, tapering off time in his room in exchange for a new game.  No interest.  He wasn't falling for that.  Even though it is almost two months until Christmas and he is completely out of money.

Last night it was almost midnight before he went to sleep amidst more fights and tears and then he woke me this morning with a screaming complaint that I had not woken him at 6 am as "I told you to".

It is not good when you find yourself shaking with stress before you've even had coffee.

Other recent meltdowns have been about perceived unfairness, meanness, misunderstandings, jumping to conclusions and changes of plans.

Yesterday I told him that he could not see his friend today if there was any more bad behaviour.  This morning he shouted and screamed and swore at me and so I told him the visit was off.  Cue a teary meltdown.  Now I am trying to find a way back.  I have suggested a written and signed contract between us that would slowly wean him off his bedtime/morning routine, in return for seeing his friend today.  "Okay," he said.

So were the last 18 months just a big game to him then?

And will this work? Or will he change his mind this evening once his friend has gone home...

Yesterday I walked into town with Smiley and we took part in a protest against cuts to child benefit. That's all though, I wasn't involved in the organisation and promotion.  It was great to see some of my friends from the PACUB group, and it was great to feel normal and relaxed, even though I had a child with severe special needs with me, she wasn't trying to control anything, she wasn't having meltdowns, she was just smiling and laughing and enjoying the day and the attention.  I just want life with my son to be like that too.

Not sure how I ended up so far away from Smiley in this pic!

45 comments:

  1. I wish I knew how to help, can only imagine how hard this is for all of you xxx

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    1. Thanks Jen, hopefully school tomorrow will take the pressure off xxx

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  2. Yes, what to do. Had a lovely day yesterday w the boy (nearly 12) enjoying grandparents company, seeming in good form. But oh boy what a night, massive meltdown, had to shut the other kids in their room for safety & the place was utterly trashed. It was a perceived injustice meltdown. One aspect I've very fearful of is that sometimes he will punch or hit me and if I get hurt say it's 'because you're weak.' These instances are not as common as before, but last time he threw a knife in rage. It will take one incident and someone will get really hurt. We've had talks with the Lucena services but it's mostly support for us, we're supposed to implement any programmes with him ourselves, so difficult with 3 other kids & just getting through school, homework, life. We have 'No more meltdowns' the book, which I must look at again. And the guy on facebook Autism Discussion page is so practical. Still I know what you mean, I feel at a loss as to something that really helps, we are often walking on eggshells and at 12 years of age I am fearful as to how he can cope outside of the house when faced with a challenge.

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    1. Thanks so much for your comment Alison, this all sounds so familiar, and I must check out that book :)

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  3. I too wish I could say something meaningful, but I know I can't so I'll just offer you virtual hugs and say that I hope you manage to find a way that works with your son. It can't be helping your stress levels that you're not getting enough rest on top of the days that you're having. Really love the picture though - I hope the campaign is successful xx

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    1. I've actually been getting slightly more sleep for the past week, and all virtual hugs gratefully received xx

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  4. I can't offer any real advice but I am thinking of you. Not aspergers related at all and I don't pretend to know what you're going through but my daughter does seem to move from mild obsession to the next. Could your child's bed-time fears be a bit of an obsession? Eventhough this is far greater than anything I've ever dealt with would there be something else you could get him obsessed about that is far removed from his bedroom or even indoors? Like something outside, growing something in the garden or painting an outside wall? Even to the point of taking photos of the progress and keeping a scrapbook. I don't think you should stop writing about these meltdowns & the related stuff, we all need to read this. Thank you for going to the march, I didn't make it and I am very grateful to those who did. Great photo!

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    1. Thanks Joanna, and I'm glad you find it interesting. I'm so glad I went on the march, I live almost in the city centre so very easy for me :)

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  5. I forgot to say we had huge issues w bed routing & getting up. We made sure there were no games in his room at night - the computer was moved to the garage conversion. Having his own alarm made him feel in control of his own getting up so we didn't have to beg him to get up. Once he got up himself he was praised to the sky etc. One thing that has helped us at nights is using prescribed Melatonin to help him feel sleepy. As it's a naturally occuring hormone I don't mind giving it. I can say that his moods etc have been better since he's on it and goes to sleep much earlier.

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    1. Yes there are no games in his room, orTV or anything like that. I did try melatonin, but stopped it after reading a couple of articles over the summer that worried me. And because I tried it too and it made me feel pretty awful the next day. But I may need to try it again.

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    2. Yeah, I can understand your concern with melantonin (or anything similar) but one thing you could think about is trying it for a short period (say 3 months). What we found once we all got a bit more sleep was that my son got much more reasonable, so things like contracts became a possibility agajn. Without the melatonin we couldn't get started on any other strategy.

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  6. This sounds very distressing and I wish I could help you.

    Hugs

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    1. You do help, just by reading and commenting x

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  7. I am extremely saddened to read this. I guess I didn't realise it was so bad.. because you don't really write about it too much. Contact Declan or Zoe (Zoe has had experience with these types of issues with her own son). You have nothing to lose by asking a few questions and perhaps getting some suggestions. xx

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    1. Therre was a good spell for a number of months earlier in the year, but really from the start of the summer break it's been difficult. I expected things to improve once he settled into the new term. But I'm still waiting. Contacting D or T is an excellent idea, thank you xx

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  8. My 3yo had a massive meltdown on Friday night - we missed dinner completely as she clung to my feet so I couldn't move and screamed for sweets, eventually escalating into scratching my face. As I started to read her bedtime story after she'd calmed down and was eating a bread roll in bed instead of supper, I burst into tears. She got a big shock and hasn't stopped saying sorry for it since. I can't imagine what it must be like to have to deal with meltdowns from a teenage boy. Could he spend a few days with his dad to give you both a bit of a break? I know he sees his dad sometimes as you've written about it. You sound like you need help now, before you crack. I know he isn't doing it on purpose and he also needs help but he'll need a lot more help if you collapse under the stress of it all.

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    1. So sorry that your gorgeous daughter made you cry, I can only imagine how upsetting that must have been ((hugs)) Crying has an interesting effect here - often it calms things but not necessarily in a good way, because I stop being the adult when I cry, if you know what I mean. Unfortunately staying with his Dad is not an option yet, but maybe some day..

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  9. So sorry to hear this Blue Sky.

    Yes I think they can learn, or rather be taught, how to control their anger. That specialist needs to get unbusy quick!

    His fears perhaps playing on him at night? Stuck in it and can't get out of it? My almost 13 yo still insists on me standing outside the bathroom when he brushes his teeth at night, wait til he's in bed and that I close the door tightly after him. So 'no-one' can get in at him. It's all in his head but he can't get himself out of it.

    I was just about to suggest a contract too.... 'cos that's exactly what I'm introducing here tomorrow to curb unacceptable behaviour.

    I know what I'm dealing with is nothing like what you're going through but my pounding heart and raised dtress levels is ridiculous! he must take some responsibility around here.
    xx Jazzy

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    1. Thanks Jazzy - you always see through to the heart of the problem xx

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  10. I don't envy you and I hardly can talk about your kind of experience. My boy will be 7 tommorow and he isn't Aspie as you know, but is Autistic and pre-verbal.
    What I learned this years is that I need to be alert about the things he does. That most of the time he gives the decision (at least for now I can say) if he has a meltdown or just 'plain old stubbornness' in me. That this does not depend so much in him than depends on me, on my reaction.
    I will not say that your son does the same thing - I'm not in your situation and I'm not living with your son. I understand how hard it must be for you. Sending you big - BIG - hugs... Take care.

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    1. I hope your boy has a lovely birthday tomorrow and enjoys it :) I agree that reaction is important and I have been working hard on the staying calm thing and that has certainly shortened the length of time some of the meltdowns last, but last thing at night and 1st thing in the morning are not good times for me!

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    2. I understand you completely. xxx

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  11. Sorry you are having such a time of it! The contract does sound like a good idea..having an ultimatum-agreeing to consequences and rewards and sticking to it...I wish that I had more to offer..Hang in there...

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    1. Thanks Kathleen, I hope the contract idea works too: I am worried that he signed it more because he wanted to see his friend and was not really thinking about how he would feel once night came. I agreed to stay with him for 15 minutes tonight, and less time each night after. I am due to go in exactly 3 minutes so we will see how it goes...

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  12. Sorry to hear you're having such a difficult time but I understand the anguish you're going through as we had a rough time a few years ago. As for advice though, I am not sure what to suggest except to mention some of the things that have worked for us.

    At our lowest point we got help from a clinical psychologist who introduced us to the 1-5 anger scale. Such was our son's meltdowns we had to scale it down to 1-3 but it worked because we learnt to better recognise the signals of an impending meltdown and to stop our son loosing control. Doesn't work all the time though but it helps.

    We also got a sensory assessment with an OT which is worth doing as sensory difficulties can also add to our children's stress. Sometimes sensory issues can be quite subtle as in my son but if you look they can be there and they can add to the aggression.

    As for sleep, I'd recommend you try and get some specialist help on this as your son seems to have some very deep fears. My son had a spell of sleep problems (he became very afraid of going to sleep due to terrible nightmares). The psych seemed to think it was anxiety and recommended medication as nothing else was working (CBT was ruled out as my son lost his ability to talk with the professionals). I know for some parents they don't want to go that route but for us it became the only option left. His anxiety was out of control (as you know he became agoraphobic and wouldnt leave the house) and nothing anyone was doing was working. So following advice we used medication and meltaonin and it has improved my son's life a lot. Its not the only thing though; we have to continually remind him and guide him about behaviour and slowly he is improving but maybe that is due to maturity.

    Sorry for the long comment; I'm not sure what I've said is that helpful but I hope you get some relief very soon.

    Deb

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  13. Deb I know how busy you are and I got the impression that this weekend has been challenging for you too, so I really really appreciate your thoughtful comment. I am tackling this situation using most of what you are describing, with CBT planned once his anxiety is reduced and a slot becomes available. I am hoping that maturity will help my son too x

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  14. I think the contract is a great idea and hope this week is better for you both.
    It was also great seeing you and smiley yesterday :) xxx

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    1. Thanks Niamh, going back to school has certainly helped! And it was really good to see you and meet your littlie. Xx

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  15. Might be time to talk to a psychiatrist about anxiety meds. At least he will be able to tell you how they work and any side effects. It's a route that several of us have taken to get through puberty, in one piece.

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  16. I found your blog by accident last week and I've found it very helpful although I think our family has come through a lot of the problems you are experiencing now. My son wasn't diagnosed until his very late teens and fortunately meltdowns were rare. Though I still remember how awful they were.
    Advice? Well, one thing that did help and continues to be helpful is letting him go to a quiet place when his anger is intense and leaving him alone until he feels able to interact again. It's sort of counter-intuitive, because it looks like he's simply storming off and 'sulking' and it can be really irritating when it happens mid-sentence but I've realised he needs to do it. The great thing is, he now recognises he needs to do it and he can do it for himself.
    A few years ago, I was working with another lad (12 years old) who had Asperger's along with severe anger-management issues and again this was the most effective technique. Although in his case I was more proactive, taking him somewhere quiet, talking him down and reminding him of the rules. (things like, we don't hit people even when we are very angry with them). This is probably easier in a school context, I admit. Thinking about it though, households do have their own rules regarding conduct but they aren't usually all made explicit, most of us just know how we should behave, so perhaps it might help to dicuss what's acceptable, agree it and write it down.
    One thing I did notice was that this gets better with time. Both my son and the boy I worked with coped better as they matured.
    As to the sleeping issue, I used to leave the bedroom door open just a crack so he could see the light from the hallway. (I made my parents do this, too) Or you might try a small night-light. We had one from Mothercare that was simply a plug that glowed when it was plugged in, my kids seemed to find it comforting.
    I do hope your specialist finds time to see you soon, it's hard coping on your own without support.

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    1. Breda,thank you so much for finding the time to comment, I really appreciate it, and I hope other people will too. I drew up some basic house rules a year ago after the first series of bad meltdowns, and they have helped, he has been angry but a little better able to channel it in a less damaging way. And it's really good to hear that you found that these problems get better with maturity :D

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  17. *hugs* I sort of know how you feel, though with Max it's all screams and lashing out rather than explaining what to do.
    I remember the hours every night in his room waiting for his screaming and trashing the place to lead to such total and utter exhaustion that he finally literally passed out. It was the only time I was finally able to get out of the damn room!
    Sending you love and hugs. xxxx

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    1. There's a bit of both here, I really hope that Max calms for you soon and life gets better for you all xxxx

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  18. Day two is not looking good, he says that last night was torture and he's already broken the bedtime contract. What now....?

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    1. Ring your doctor or therapist and explain the urgency of your situation. Hopefully they can speed up the process and get help for you. It may be time to get a psychiatrist involved (if you already haven't). We're under one all the time now and its a relief to be a phone call away from her help. Deb xx

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    2. Deb, that's great news that you can reach a psychiatrist at the end of the phone :) I don't think that service is available here: you just have to go to A&E..

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  19. really feel for you. Can empathise with the lack of sleeping - my son always struggles and we seem to be having more meltdowns at the mo too. glad to have found your blog. thank you x

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    1. Hello and thank you so much for commenting:) and I hope your son calms down too soon x

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  20. Oh, i wish i could do something to help all of you - even if it was just to make a cuppa and let you chew my ear for a while (i also supply tissues for tears as well!)

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  21. I used to work with autistic/aspergers adults, Blue Sky. We had a lot of anger and challenging behaviour. One thing we did try, with a particular young man, was using a weighted blanket. I was very dubious about the whole thing, feeling that there was a repressive element to it which I felt uncomfortable with. However, the young man took to it well and he would go to his room and get under the weighted blanket, of his own accord, when he was getting 'out of control.' The psychotherapist, who suggested it, said it would be like being 'held', for him. Something he would have found difficult if a person held him. So, it gave him a sense of being secure and in control. Maybe a weighted blanket could be useful for your son. It's worth exploring.
    Great blog, btw :)

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    1. Thank you for your kind words and for your suggestions - a weighted blanket is often used as part of a sensor diet and while he did not take to a weighted blanket, he often wraps himself in a heavy duvet when he is feeling stressed, and he used to ask me to sit on him (gently, obviously) when he was younger :)

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  22. I have nothing constructive to add having no ASD experience but just wanted to send you a big cyber hug and let you know I am thinking of you xxxx it sounds really stressful and I hope someone can offer some hands on support ASAP x

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    1. Thank you, I always feel less alone when people comment, even if they can't physically help, so every comment is really appreciated xx

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