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how oh how do we maintain any form of control or discipline over DS?

17 replies

hereidrawtheline · 10/03/2009 12:11

Ok so DS has not been "officially" DX ASD yet but it is fairly inevitable. If it isnt that it will be some other significant issue as there are certainly problems there that his peers do not have, most of which are very ASD like.

We tried TO when he was 2 and scrapped it after a couple of months because he learned nothing positive from it, and it was totally traumatic. We instead focus on positive reinforcement, lots of praise when he does things well, a firm no when necessary, immediate consequence like "if you hit me with that hammer I will take it away", all the normal, reasonable stuff. We really really try very hard. We do nothing but try very hard.

The thing is - he is becoming totally unmanageable. I have to say this - I dont mean it, I really dont - but I hope you understand - yesterday was such a bad day after a million other bad days I thought for one split second I wish I could just give him to someone else for a while. I really dont mean it. I wouldnt do it if you paid me. But for the first time I could truly understand how parents of children with severe SN could need to put them in care homes from time to time. I know my situation is not as bad, and I do truly adore and love my DS more than anything. But I am so fucking exhausted and he is driving us crazy constantly.

He is barely sleeping. He will wake every hour, then get up for good for the day anytime between 2 am and 6 am. He starts crying and begging to go to bed around 8 am for a nap. He has always had a rigid sleep schedule and we havent changed one single thing. This is all his own body chemistry. He always slept from 8-8, then napped from 12-2. Always. Now its madness. I dont put him down for a nap til at least 11 as that will really mess his whole pattern up but he is a nightmare begging for it. Today I relented and put him down at 8:30 thinking, you know what, if he needs sleep, let him have it. Sure enough he did exactly what I suspected he would do. As soon as I put a nappy on him and gave him his milk (rice) and read his story to him, tucked him in, left the room, he started shouting "MAMA" at the top of his lungs, in a playful voice, "I FEEL BETTER NOW" ggggrrrrrr fucking child is pushing my buttons and winding me up. He is now actually down for his real nap.

He is kicking off every single time things dont go his way. Every little detail. You name it, if it is part of daily life, he can scream over it. Last night we wouldnt let him have any more shredded cheese on his jacket as we are trying to cut down his dairy and he already had a lot and in anger he threw the bowl of cheese across the table. He whines non stop. I mean really whines non stop. It just goes on and on. He is loud. Everything is at full volume. He is relentless. He is manic. He never pays attention to what his body is doing so is always hurting him and us.

Mixed in with all this, he is very insecure emotionally, if I get cross at all he falls apart and repeats "happy mama" until I say it myself convincingly. He is very insecure and afraid of things. He is very affectionate and needy. He doesnt entertain himself at all. Yesterday he was stood in front of 2 toy boxes - the same two as always. He wanted to play with his stethascope. I said "get it out of your striped toy box" he stood there for almost 5 minutes trying to work out which one it was. I wasnt being cruel leaving him to do it, I am desperately trying to teach him some shred of independence. I said "the one with stripes. brown stripes. 3 different colours. the one you have always put your stethescope in" The thing is - he knows what stripes, colours, etc are. He really does. He can identify correctly a shocking amount of things, though he usually refuses to.

In this case he was 2 foot in front of said toy box and could not decide if it was that one, or the plain one next to it. In the end I finally got up and showed him. But I really just dont get it. What is this? Is that a normal ASD thing? Its almost sometimes like he has regressed but I am not sure as then other times he leaps forwards. I really dont get it. I am so totally confused.

To summarise:

What is the deal with the toy box and the million other situations that example represents?

What about the emotional insecurity? If something is bad he will insist it is good. He gags a lot and has learned the word gag and now goes on and on about how lovely gagging is - all because he is scared shitless of it. This scares me as some things are supposed to be bad. And I feel this makes him vulnerable.

How the hell can I get him to stop being whiny all the time? And stop being so loud? And sit still for 5 minutes? And not whack me in the face with a toy hammer every day?

How do I stop him melting down every time things dont go his way? I understand I have to reduce his triggers but at the moment his triggers involve anything and everything so I cant reduce all that.

How do we get him sleeping in a remotely sane way? 2 am? waking up for the rest of the day? No I really cant carry on this way!

How do I discipline him, without hurting him. Remember I am a softie and I love him more than myself or anything else ever. And he is extremely over sensitive and I refuse to really upset him. I just want him to learn some boundaries.

Please help and just give me your general opinion on what is going on. I am so sorry to always be on here whinging but really things are very difficult with him at the moment.

OP posts:
hereidrawtheline · 10/03/2009 12:12

blimey that was long sorry

I hope someone can read it and help

OP posts:
silverfrog · 10/03/2009 12:34

sorry it's tough at the moment, HIDTL

If it's any consolation, i too have had moments of wanting ot give dd1 away. Fleeting moments, but just sometimes, I feel like there is nothing more I can do, and that, in fact, i am making the situation worse (dd1 is worst behaved for me), and that she would probably be better off with someone else who knows what they are doing.

I would never do it, of course, but it has crossed my mind, so you are not alone in feling that way.

Reading through your post, what crossed my mind was that dd1 has periods like you are describing, where her behaviour goes to pot, and everything regresses to the lowest common denominator, ie her very worst behaviuor. This usually happens because she is about to have a developmental spurt, but it si hell while we go through it.

dd1 makes me do everyhitng for her. independence is her biggest fear, I sometimes think. So if she wants to shw me somwthing, she will repeatedly say "what's this" until I do, and then she willnot answer, even though she wants to - I have to supply the answer too. If she wants a toy she will stand there with her hand on (say) her drum, saying "play the drum" until I get it off the shelf for her - it is well within reach, and not heavy. she can carry it with ease, but makes me get it for her. and a million other similar situations, including dressing/undressing, even holding her cup sometimes.

have you thought about getting someone in to help? these are all examples of your ds (and my dd) manipulating us and their environment to suit their purpose, and while it is annoying, I tend to think "oh well, she'll come around eventually". She won't. we have a behavioural specialist to help us build a programme, and to sort out soem of dd1's less endearing traits. like shouting at me, or refusing to do something if I ask but doing it perfectly if dh repeats the request. ours is a Verbal Behaviour consultant, it's sort of a branch of ABA. He is very good, really lovely, and helps us try to keep our family on track. After all, at the end of the day, that is what we are, so we focus on things that ease our daily life, rather than more therapy-based things. it might be worth a thought?

magso · 10/03/2009 13:45

Ds like Silverfrogs DD, used to have worsening behaviour just before a developmental leap or a growth spurt. And I too can identify with that feeling of needing time away from ds and wondering if he wouldnt be better off with someone else- and this is always worst when both ds and I seriously sleep deprived or unwell! The hourly wakenings are crippling. Ds now sleeps well(apart from the lark starts) so there is hope for your son too.
My son is older now (but still wants high level attention) but was I suspect similar to your son in some ways when smaller (except less able and nonverbal). I put much of his behaviuor down to not understanding and not being able to communicate - but now I wonder!? He had a different approach to toy boxes (he could not use verbal demands!) he used to tip them all out- grr! There could be several reasons he did not get the toy out himself. The obvious one is he wanted you to do it but there could be umpteen reasons why! For my son I think his need for me to do everything for him was in part to get everything back to normal (mummy entertaining him and forfilling his every need!)! Trying to get him to do things for himself was a change and ds doesnt like change. It is also possible that dispite your sons good language he did not understand what was said/ what he needed to do (open the box and search).
On the behaviour front it is very much one tiny step at a time. It is easy to be overwhealmed! Try and see what has been working and write a list. Immediate consequenses work - thats good! Can you extend it to areas? Does praise? Does very simple tiny step instructions followed by praise. Or active noticing ( after getting started playing together)- ie commenting on what child is doing to encourage starting to play without you.
I have no sleep advice, but I wonder if your ds is at that awkward stage of still needing a knap but having too much for a proper night sleep. Is the HV helpful?
Hope you have a good night tonight!

hereidrawtheline · 10/03/2009 14:18

thank you for your replies and being brave enough to read my huge post! Well I went to sleep after posting it and DS woke me up shouting for me. He gives me approximately 1 second to wake up and get from my bed to his before he really starts to raise his voice. I feel so sick (from head cold, nothing serious) and dog tired. I just dont want to do this job at the moment. I asked DH if he could come home & he cant right now. So thats it I have to carry on. Am so tired. Every night when I go to bed I feel as sore and exhausted as the morning when I wake up. And I feel like I am strapped onto a treadmill that I have no way of getting off. I think right now I am just too tired to do everything properly.

Do the things I described in my OP sound like ASD to you?

OP posts:
magso · 10/03/2009 14:33

Oh you are ill as well as sleep deprived and exhausted! (Sending vertual honey and lemon)
That is the worst combination!! Do you get any respite - nursery/pre-school? Can you get an extra session?? Hope Dh can get home soon and let you sleep.

hereidrawtheline · 10/03/2009 15:21

only a cold but I do feel rather shitty. thanks for the honey & lemon. I would just kill for a really great mother around who would just move in and help out. DS goes to pre-school 1 session a week. That is all that is available to him at the moment unfortunately I would rather he went for 2. He goes on Thursday mornings. DH should be home around 4:30 or 5.

AAAAHHHHH I just managed to get DS excited about watching a dvd and the bloody player broke!!!!!! Can you hear me wailing????? WHY ME????

OP posts:
bunnyrabbit · 10/03/2009 15:24

Oh you poor thing. Sorry if I missed it, but how old is your DS?

BR

hereidrawtheline · 10/03/2009 15:26

2.7 just the right age to combine the lethal charms of terrible twos, beautiful toddlerness, sweetness, and emerging special needs!

OP posts:
bunnyrabbit · 10/03/2009 16:05

I try not to say controversial things on MN, but you are having such a tough time.. here goes.

Whether or not your DS is on the spectrum a lot of his behaviour is typical of a child at this age trying to control their environment IMHO.

My DS1 is 5.5 and has just been diagnosed ASD. He is High level or Aspergers (haven't told me yet) and very advanced verbally.

We have always been very strict on routine and making clear what is and is not acceptable behaviour, and have been told that this is exactly what he needs.

IMHO (and please don't shoot me down in flames) I think this is what any child needs especially at this age.

If you are concerned then you must speak to your health visitor and don't be afraid to ask for help. Having a child is daunting enough without any extra exciting twists nature throws our way.

Triggers for DS1 are breaks to routine and anything unexpected, and believe me I know all about melt downs!

Things that work in my experience:

  1. Firstly : you are allowed to get angry/frustrated/upset. We all do at some time. You are human. I use a litany to get me through. I used to say to DS that his behaviour was unacceptable, and I didn't have to accept it. He didn't really understand what this meant for a long time, but it helped me to say it (and realise/admit that it wasn't accepatable!!) kept me calm, and defused the situation.
  1. Stick to your guns. Unless you think he is in pain, uncomfortable, if you make a decision then stick to it. If you don't he will know all he has to do is keep going until you give in. If you have decided that hitting you with a hammer is unacceptable then take it off him, tell him, however you choose, (sorry but I say 'no, we don't do that) that this is not acceptable behaviour and confiscate the hammer in plain site.(wow I sound so cruel )
  1. Routine : If your son does have an ASD then the best thing for both of you is to have a routine. You already have one with his sleep by the sound of it so maybe actually putting this on paper will help. Pictures are a great way of making kids your DS's age (and ASD) understand what is happening now and what is going to happen next/later. You can show it to him in the morning and at set times during the day so he know what is going to happen next. This might also help you to get through the day.
  1. You could invest in a clock (there are various pop-up ones) to tell your DS when it is morning. You could start setting it for earlier in the morning and slowly move it later. If he gets up before the cock has crowed/bunny has popped up (whatever!) you could try firmly taking him back to bed and saying "it's not morning yet, goodnight." This may take some time but I know that lots have people have had success with this.
  1. Melt downs: These really are dependant on the child. There are several MNers who can describe in detail what it feels like when someone with an ASD has a sensory 'overload' and meltdown and the best way to deal with it for them. I found with DS that he would calm down if I sat next to him sometimes and told him that I would talk to him when he stopped thrashing about/crying/screaming lying on the floor, kept calm and made it clear that he wasn't getting what ever it was until I could understand what he wanted.... obviously this only works in certain situations.

This is all only my opinion so sorry if anyone else disagrees....

Gotta go 'cos at work

Sorry to ramble but really feel for you..

BR

bunnyrabbit · 10/03/2009 16:09

Oh yes and lots of warnings about what's happening next (telly off, wash hands for dinner, getting dressed, starting bedtime routine (bath etc) ..... 10 minutes until , 5 minutes until 2 minutes until *...

milou2 · 10/03/2009 16:48

DS2 was an early waker, but not as bad, 4.30am or 5am for a period. He did grow out of it.

Growth spurts and developmental leaps often follow some particularly trying time. DS2 has been very one track minded over the past few weeks and I have realised that he has learnt to flush the loo himself every time, and has stopped picking his nose. And I wasn't even trying to encourage him to learn these new skills.

DS2 has phases of wanting me to do things for him. It looks and feels very manipulative, but I somehow think it means something different for him. I still don't like it. He gets hugely threatened by me setting limits on him, maybe my anger seems overpowering to him. He also seems very threatened by me refusing to help him. As he is older I can look back and see that when he is ready to do something by himself he will just go off and do it, he didn't need to be pressured to develop. I feel as if I am being foolish to be so patient with him, but I used to be more forceful and he just fell apart aged 9.

Can other adults spend more time looking after him at times when you can get some proper uninterrupted sleep? Can you go to sleep as soon as he's asleep at night, every single night, so you maximise your rest? Get very angry if any adult refuses to help you adequately, or just lock the bedroom door after you. If words don't work actions usually do.

Has this behaviour coincided with starting at pre-school? Or with something else?

SixSpot · 10/03/2009 16:57

Are you on a waiting list to get any kind of one-to-one support in a nursery/playgroup setting? It really turned the corner for DS3 when he got something like that. He was awful at the age of two, absolutely awful. Things have got a lot better since then in many ways though, so there is hope .

hereidrawtheline · 10/03/2009 19:37

tbh everything is in the air. It is all just madness. Do any of you know our back story with regards to the private opinion re: DX etc and ensuing mayhem?

He has got considerably worse since xmas and nursery just started a couple of weeks ago so I dont think its that. He isnt on any waiting lists for anything but for his long awaited appointment to be assessed. That is 22 April (after they "lost" his referral 4 times )

My head cold is awful and I really need some rest so I am just about to take some medicine & go to bed for the night! Hooray! Hopefully a good nights sleep will do me the world of good.

thank you all for your help, and bunnyrabbit, for breaking your rule of not saying controversial stuff on MN, but I dont see what was controversial about your post, it was very thoughtful.

DS is a delight. I feel such a sell out criticising him to anyone. But my god he is trying me right now.

OP posts:
bunnyrabbit · 11/03/2009 08:20

You poor thing. [hugs] (we really do need a hug emoticon) Hope you had a good night's sleep.

When my DH and his brother were naughty my MIL always used to say "I love you , but that doesn't mean I like you at this moment in time". That works for me to. Why should I like the fact that he's being monstrous? Doesn't mean we love them any less, or that they're any less gorgeous when they're not having a 'moment'.

I'm afraid I don't know your back story (luckily our referral was only lost once) but hang in there. milou2 is so right: sleep when he sleeps. Demand Ask for help (friends, relatives etc). Take extra sessions at pre-school, snatch some time for yourself anyway you can.

BR

PS Controversial: I believe in routine, and saying no. I know a lot of people don't agree. Each to our own.....

lou031205 · 12/03/2009 16:53

Coming to this late, and may be repeating a bit what I have said on other threads, but here goes:

To summarise:

"What is the deal with the toy box and the million other situations that example represents?"

Being able to identify a box isn't the issue here. it is more than that. I wonder if he is getting overwhelmed with the decision? Is it possible that he isn't able to follow the steps of a command? DD could identify the box, could identify the stethescope, and would know that she wants to play with it, but couldn't necessarily follow the multiple steps that involve getting the right box, then choosing the stethescope and NOT getting all the other stuff.

"What about the emotional insecurity? If something is bad he will insist it is good. He gags a lot and has learned the word gag and now goes on and on about how lovely gagging is - all because he is scared shitless of it. This scares me as some things are supposed to be bad. And I feel this makes him vulnerable."

It sounds like he is trying to comfort himself by telling himself that it is OK. DD is phobic about "soreness" and she will say "all better, not sore!" when she has hurt herself and we put cream on her. It clearly is sore, but she is trying to calm herself.

"How the hell can I get him to stop being whiny all the time? And stop being so loud? And sit still for 5 minutes? And not whack me in the face with a toy hammer every day?"

When you find out, let me know....

"How do I stop him melting down every time things dont go his way? I understand I have to reduce his triggers but at the moment his triggers involve anything and everything so I cant reduce all that."

Once you have identified the triggers, I think it is more about getting there first. So the triggers will still be there, but you try and intervene before they get pulled. Exhausting.

Has anyone suggested a "special box?" It is a box of items that are kept away from general toys, out of his reach. It should have things that would be a treat for him. For DD that means anything that has real sensory properties. She has things like a windmill she can blow, a squidgy ball, a rubix cube, a tub of 'goo', a wriggly caterpillar, a scratchy mitten, a massage roller, and a crinkly tube. All really cheap and cheerful from places like Hawkins Bizzarre. It comes out when I can forsee a meltdown or if she is completely wired, for example, and she can play with it. As soon as she loses interest, it goes away again.

The idea is that it gives a constructive outlet for her energies, and a focus.

"How do we get him sleeping in a remotely sane way? 2 am? waking up for the rest of the day? No I really cant carry on this way!"

Not sure about this one. For us, we have tried hard to identify the triggers for DD. She has a strict 'order' of things that must be in place at bedtime, and sometimes going through this order (covers on, bear in arms, cat behind head on the right hand side, fan on, star on) reassures her that it is OK to go to sleep. Sometimes chatting about anything other than sleep, and then gradually moving on to chatting about who we think is asleep helps. Boring but "Daddy is asleep, DD2 is asleep, doggy is asleep...do you think Grandad is asleep? Is X (family friend) asleep?....mummy needs to go to sleep now too. Time for sleep now". Other times none of this helps. DD is now prescribed Melatonin, which works magnificently in bedtime settling, but more variable results are had for the middle of the night wakings. Even if she has been up for several hours in the night, she is likely to wake for the day at around 05.30. We just warn preschool if she has been up for a particularly long time the night before.

"How do I discipline him, without hurting him. Remember I am a softie and I love him more than myself or anything else ever. And he is extremely over sensitive and I refuse to really upset him. I just want him to learn some boundaries."

This is a toughie. Discipline does hurt. When DD was first assessed at preschool, she was 2.10. The inclusion co-ordinator told us to stop the 'naughty step' because she just didn't understand the naughty concept. We went with that, but I posted in desperation a couple of weeks ago, and Time Out was suggested.

I warn DD, and if she doesn't respond, then she gets taken to her bedroom (there is a stairgate across her door) and told she has to stay there for 3 minutes (she is now 3.3). She HATES it. I HATE it. She cries, she screams, she says "I lost mummy, Mummy gone", it is awful. When I go back after strictly 3 minutes, I sit her on her bed, remind her why, very factually, she was put there, and that she needs to say "sorry Mummy". She does, and we have a get better hug. We haven't seen massive changes in her general behaviour, but the more extreme things, like biting, kicking or hitting are reducing, because as soon as I see her start to raise her hand, I say "DD, stop! If you hit/kick/bite me/x you will have timeout." She hates it so much that she will stop.

I do think it will lose its effect if I do it for too many behaviours, because the effectiveness of it is there because it is such a huge thing. So I reserve it for times when she is going to hurt herself, or others.

"Please help and just give me your general opinion on what is going on. I am so sorry to always be on here whinging but really things are very difficult with him at the moment. "

Not qualified to say. But, things that I observe with DD is that it is very easy to think I know what level she is at, and I have usually expected way too much, even now. And she is so variable, that sometimes I pitch it right, and the next moment I get it completely wrong. And she is exhausting. You need to get support, for your own sake, because these wonderful children are really very hard work!

hereidrawtheline · 12/03/2009 19:55

lou thanks very much for a great post. That has given me a lot to think about.

He slept last night - only woke once and I slept through (took a sleeping pill, DH dealt with it) - because - we got him to sleep under his weighted blanket!!!! Took 2 weeks of gradually getting it nearer to him just because he doesnt like new materials but hey - it bloody worked!!! best £100 I have ever spent! He has been talking about his special blanket all day, the trucks & trains on it all have names, its the best blanket in the world. I am actually going to start another thread as there were a few other posters a while ago I said I would report back to about the blanket as its such an investment. But really, going from waking every hour, then up for good anytime between 2 & 6, to sleeping through except waking for a drink at 12 - NOT BLOODY BAD. Routine, everything the same, but the blanket.

You really made me chuckle when you said "When you find out, let me know...."

I really like the idea of a special box. How do you regulate it so that it doesnt just join the flow of toys? With DS if he really loves something in it, I can foresee he will want to take it everywhere and we will have meltdowns if we try to say no

Thanks again.

OP posts:
lou031205 · 12/03/2009 20:37

Glad to be a little helpful, HIDTL

The special box was talked about before it was given, and I talked over and over about how special it was, and that only Mummy & Daddy get it down.

I always sit with DD when she has the special box, and if she loses interest or starts throwing the items, then I tell her the box is going away. END OF. She might have a meltdown, but is more likely to comply for the sake of keeping it out.

I think that in some ways you need to accept that the meltdowns are part of his and your life, and although you will try to avoid them, they are inevitable at this stage. If you are so afraid of them (horrible as they are) that you allow him to control you, that is almost worse than the meltdowns. I think that we have had to accept that sometimes we have to say something or do something that we KNOW will lead to a melt down, but if we don't then DD incorporates it into her 'domain' or routine, and then we would be stuck with it for months and months.

Oh, I meant to say, what is his response to sensory stimulation? One thing DH found by accident, is that if DD is very hyped up or in a meltdown, she responds amazingly to being cradled in his arms, with her limbs drawn up quite firmly, like a baby, and rocked gently as he sings "Rock-a-bye-baby". The OT at our assessment on Tuesday felt that from our description of DD, she is quite sensory seeking, and she said that the pressure of being held tight and the rocking along with the rhythmic movement would likely be helping her to know where all her limbs are, and giving her reassurance.

DD gets hyperstimulated by even activities such as putting pants and socks on.

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