Failing to follow CAMHS advice

[Mandapanda]

Our new CAMHS lady said we should try and get Aw up at a regular time. She said we should do it together, as most things have fallen to me over the past few years due to husband looking after his parents and being stressed out. (I know I have let a lot of things 'go' because I have had to manage on my own a lot of the time). We had a chat with him and he agreed he wants to get up at a reasonable time, in fact yesterday he was very pleased with himself because he got up at 9.30am, after I had woken him to say goodbye at about 8.50am to go to work (mostly he goes back to sleep). As his mood has been so much better this week we decided to go with his idea of about 9am to be woken, even though that would mean me doing it on my own. It appeared he would co-operate.

 

Come this morning, I woke him at 9am okay. By 9.30 there was no movement so I went in again and woke him and he got very grumpy and said he only wanted waking up once. I said he had wanted to be woken up so he could get up. He said he only wanted waking up once then to be left alone. I left the room saying firmly "Well, wake up then".

 

Since then I've been downstairs crying and on the phone to my husband. I felt anxious when I woke up anyway. I have notice I get anxious on my non-working days. I feel really sick, frightened and miserable.

 

The CAMHS lady said we should not give up each time and should just stay calm and keep on until he got up, keep saying "we love you and want to help you make your life better and make the most of the day".... She said this would make him feel reassured as we would be taking the control from him and making him feel more secure. This all makes logical sense.

 

Each time Aw's mood has started to improve, something has happened to knock him back. The last big thing was his grandma passing away at the end of January. His mood is just starting to settle down again and we have seen improvements in his sleep, eating and motivation, and his cheeky sense of humour returning, he's even getting on well with his brother. I am scared that if we start trying to make him do things when he doesn't want to, his mood will dip again and it will create more problems than it may solve. But also I am scared that he and I are going to be stuck here in this house for ever.

 

I wish someone could come here and make me feel so much better that I can do this. Why can't I just go up to his room and make him get up. I am supposed to be an adult but I am behaving just like him. How pathetic am I?

 

 

 

 

[JsMum]

 

 

Hi, if his Grandma Died in January and he is grieving then his behaviour is part of the process, he will need time and help and support to help him throw the greiving process.

 

Could you look into bereavement councilling for him?

 

Also if you are really struggling with the demands of his needs you could request an assessment to look at services coming into the home to assist, this is usually done under a community care assessment, or child in need assessment.

 

You could write to the CAMHS lady a formal letter expressing the difficulties that your son is facing and that you would like further assistance, and further support and again express your concerns over the potential crisis that could occur if your family breakdown.

 

It may be that he need further structure to the day, including other day provisions, activities that help engage him and stimulate his mind and body.

 

Depression is a debilitating condtion and it does need a lot of support, more than your recieving at presant.

 

Do you use visual aids, time timers for time, that kind of resources?

 

What does he have to look forward to when he does get up, maybe he feels there is no point and hides under his bedding to hide.

 

Obvously habbits where we sleep all day and then awake and fearful throw the night will continue to make this difficult to cope with, having it in theroy is EASY PESSIE but practically doing it, is just sometimes impossible.

 

It sounds like more provisions, more resources and more services are urgently needed.

 

JsMumxxxx

 

 

[baddad]

I am scared that if we start trying to make him do things when he doesn't want to, his mood will dip again and it will create more problems than it may solve.

 

Then he's totally in control of the situation. For you to be in control of the sityation you have to be prepared to deal with whatever he chucks at you when he is unable to control the situation.

 

But also I am scared that he and I are going to be stuck here in this house for ever.

 

Unlikely - he'll probably just make the decisions about where you go/what you do/when you do it.

 

I personally think that what CAMHS are suggesting places all the control in this situation with your son, and i disagree that 'this behaviour is part of the grieving process' - form the sounds of it this behaviour is part of a cycle of behaviour ('each time things have started to improve something has happened to knock him back'), and while it may be a response to hurt/disappointment etc it is not a response you need to be encouraging. If he didn't have autism, how would you respond to a child who won't get up in the morning? Is he in any doubt that you 'love him and want to help him make his life better?' Even if he is, get him OUT of bed and then tell him.

 

tell him once, nicely, to get out of bed - just like he asked. if he doesn't then tell him once, less nicely, to get out of bed and if he says 'I only want telling once' point out the obvious inaccuracy of that statement (it is obviously inaccurate because you have told him once and he hasn't got out of bed). If you arrive at a point where he needs telling a third time, drag the covers off, sanction him in some way that means something to him (if he has a playstation whatever confiscate it or his access time to it).

 

Not the popular way of doing it, I know, but the popular ways don't seem to work. This one does, surprisingly quickly if you stick to your guns, and the kids really appreciate the simplicity of it.

 

L&P

 

BD

 

[Mandapanda]

Thanks for confirming that I am pathetic!

 

[bid]

Um, I don't think BD was trying to do that, Manda...he was just offering some practical ideas

 

My son was out of school for 6 months when he had a severe breakdown at 14/15, so our situation was a little bit different maybe. At first I did let him sleep as much as he needed on the advice of the LA EP who worked with us, as he was very unwell.

 

But once he began to pick up, I did try to structure his day with a visual timetable including the time he was to get up, etc. I also tried to include something that took him out of the house even though he didn't want to go out, just once a week...nothing very heavy: swimming with me and his little brother, cinema, and so on. Time on the computer, etc, was all timetabled in otherwise that's all he would have done. The structure became easier once he had home tutors coming in.

 

Apologies if you already use a timetable

 

Bid

Edited March 27, 2009 by bid

[baddad]

Hi amanda.

 

No I certainly wasn't saying anyone is 'pathetic' (assuming that reference was to my post? ).

Having said that, if you posted purely for reassurance then no, my reply (along with all the others) probably didn't meet that criteria, because i didn't think endorsing the current situation was of any practical help to you or you son, which is what I was trying to offer.

Hope that clarifies things

 

Oh - looking at the above re visual timetables etc. I totally agree that this type of thing can be very helpful and beneficial if they are necessary. On the other hand, with a child who is perfectly capable (but unwilling) to adapt to behavioural expectations a timetable will make no difference whatsoever, and will, in fact act as a reinforcer for the negative behaviour if the timetabled expectations are not themselves enforced. It's as pointless having an 'I get up at seven' picture on the wall if the child gets up when they want to as it is having a 'no smoking' sign in a pub where everyone including the landlord smokes. It only has meaning if the meaning is enforced in some way.

 

L&P

 

BD

Edited March 27, 2009 by baddad

[Kathryn]

<'> <'>

 

I sympathise, mandapanda, as I've struggled with similar over the years and still find it difficult to rouse my 20 year old in the morning - even when she's asked me to!

 

It's a tough job when a child has no structure and nothing to get up for, and even tougher when all the policing is left to you when you actually want to be able to leave the house in the morning and have a life of your own, so I understand your feelings. You aren't bad parent. Don't be so hard on yourself.

 

What time is he going to bed? I find my daughter likes to stay up till the small hours and in many cases when she's hard to wake, she's just catching up on the sleep she's missed.

 

K x

Edited March 27, 2009 by Kathryn

[JsMum]

 

 

When J was younger he had major problems getting out of bed, simply because he couldnt face the day where he was forced into a mainstream system that wasnt apropriate learning space for him, yet we did try to get him up, Ive done what Baddad advised, pulled the bedding off, and placed in sanctions, only to be met with physical aggression and asault, and so we had to rethink our stragagies of how and what I use, Its defo very difficult when you have a child who has totally got their day and night system screwed up, but using phsycial dominance will only work if your bigger and stronger and ready to take the anger a child who has such extream needs so be carefull, we did use a very detailed visual timetable because J needs to have structure, and routine, and for us it did work, and still does.

 

I remember feeling pathetic the days my deflated tears hit the bathroom floor because physically and emotionally I wasnt strong enough to deal with the way my son was managing his own emotions and feelings.

 

I strongly do feel that your son will be going throw the grieving process, its natrual and so sorry if others dont agree, but death for children with special needs is a very complex and frightening process.

 

Your son is showing signs that he does want a lot of control, but that maybe because deep down he doesnt feel he is in control of his life.

 

I know it is very difficult to manage children who are aviodant and controlling but they need to be managed in a particular and specialist way, it may be that more expert help is required, could the CAMHS send a community nurse to do an observation and see just how hard it is.

 

JsMumxxx

 

[chris54]

I'm not suggesting you do this but I remember that it was my brother who always had the problem with getting up.

One day my mum got so fed up with it all she got a bucket of water and threw it over him in bed and then just left him to it.

I think after that he got up on the second call .

[JsMum]

I'm not suggesting you do this but I remember that it was my brother who always had the problem with getting up.

One day my mum got so fed up with it all she got a bucket of water and threw it over him in bed and then just left him to it.

I think after that he got up on the second call .

for a child with special needs, and sensory difficulties I feel this would be most inapropriate action, and boarder line child abuse!!

 

Im off for a while guys as Ive had enough lately.

 

JsMumxxx

 

[NobbyNobbs]

how old is he?

 

allowing someone with depression to 'wallow' in bed all day and achieve nothing isn't going to have a positive effect. what would he have to feel good about if he never achieved anything? even getting up can be a major achievement if he is depressed, and its obviously going to be the first of many battles, but its an important one.

 

my mother has been in a similar situation to you, without camhs support as i was undiagnosed. she tried the same route of asking me and asking me to get up and it didn't work. in the end what worked was me having no option but to get up. i believe that involved shouting at me, removing my duvet and coming back every minute and telling me again to get up until i got so sick of it i actually did. now i'm older i will openly admit that part of not wanting to get up was depression, and part of it was pure laziness and the fact that it was more comfortable to stay in bed than make the effort to get up.

 

it sounds like your son is well aware that he is in control (especially if it has been discussed with him), stating that he only wants to be asked to get up once, and you're not following his 'rules' by asking again. getting up in the morning should not be an optional activity. it is part of the basic structure of everyones day and if it has been presented to him as optional, then i'd query CAMHS on it and ask for clarification.

 

if it's merely arguing about times, how about (again consulting CAMHS since its their plan presumably) to give him an 'ultimatum' time. this way he would have more control about exactly when he gets up (after the agreed wake up call), but he has to be out of bed and dressed by a certain time as well, which will hopefully help him to feel better in the long run. for example, wake up call at 9, then he must be up and dresed by 9:30 or there is a sanction. the sanction needs to be strong enough that it is 'worth' him getting out of his warm, comfy bed.

 

if both you and your husband waking him isn't practical then you need to talk to camhs and work out another time in the day when your husband can be more involved (i know its very easy to agree you can do things in a meeting, then get home and realise they're just not practical with everything else in your life).

[westie]

This is just a suggestion that you could try (or please feel free to ignore)

 

When he is awake and co-operating discuss with him that the current "I am only telling you once" thing isnt working, then ASK HIM how he thinks you could solve it and make a plan together. I agree some sort or reward/ sanction thing may be necessary to get things moving (i.e. okay you have made a plan with me and if it is not adhered to, then you are banned from playtstation -or whatever he most likes- for a period of time. Then next day, try again. You could even try writing this sanction into some "instructions" and get him to write/ type them if possible so you know he is taking it on board more and thinking about it. This way he does have some control over his routine in the morning, and he has agreed and has written a reminder of the routine, and the consequences of not complying with it.

I use a morning/ evening routine chart for my 10yr PDA son, because it helps me enforce the "telly off at 8am" and "bed at 8.30pm" rules as I can stop the arguing with him and just say those are the rules, you know that they are on your chart.

I am not saying he always in bed at 8.30pm or always tv off at 8am but its not so long after, not dragging on for hours.

I also when these things are not followed and he is being particularly demand avoidant and next day he is really tired and therefore grumpy/ angry etc and he gets in trouble I point out to him that sticking to the bedtime routine and "recharging his brain" helps him cause it feels happier, and he can see logic.

Likewise if I let him watch TV past 8am, we are rushing around, I get wound up and irritable this irrritates both the kids and then I end up discussing with him at later time how not sticking to it ends up with me being like demon mum and this makes him sad and again he is starting to comprehend that things improve if we stick to "the rules".

 

Or an alternative to the "sanction" for non compliance could be that some sort of reinforcement/reward as part of the "rule" you agree, may help him. i.e. if he complies at least XXX times a week then he gets a mutually agreeable reward that he wants and you can afford to give (in terms of time/ money/ attention) and you can start with lower number of days and work up to more days in week.

 

I am not saying these things will give instant positive results, and at first it may be a little worse, because kids do test the new boundaries, even if they have agreed them with you (and I know this from personal experience, although your son does seem to be a little more extreme in his demand avoidance!)

 

The above is just a suggestion that I have found has worked for me and is not a criticism of anyone's methods. if I could do it all perfectly every day then I wouldnt be telling you in my post about the times when I do not reinforce the "rule" and subsequently lose it and get really wound up and frustrated both with him and myself!!!

 

The bereavement will be affecting him and the rest of the household I would think and it is hard when you lose someone so close, but making some small changes and hopefully seeing some positive (even if little) steps may help you in some way XX <'> <'> <'> these hugs are for you manda, everyone needs some at times

 

btw: my PDA son does have "cyclic" patterns of behaviour where he seems to get better for a time and then it changes, and things move backward and we have the negative cycle for a while. I am not always sure why, sometimes you can pinpoint contributory factors but not always, and I know a lot of other PDA parents for one experience similar.

[LizK]

I am presuming this is regarding your 12 year old with severe anxiety from your signature. I think it is very easy for professionals it give out advice, much harder for the parents living with it day in day out to actually carry it out and deal with the consequences <'> . I think though that comes along with our role as parents sadly.

 

I think the CAMHS advice is exactly right though, for anyone with anxiety or mood disorders structure and routine to their day is vitally important to their mental health, throw in a dash of autism and it is even more so. I suspect your son is behaving like he does to exert control and to narrow down his options. I see my son who is an anxious little boy doing this and it is very hard to fight against it even though I know narrowing down his options is ultimately detrimental to him.

 

Keep at it even if it's hard. Make sure he's going to bed at a reasonable time, make sure he is forewarned what time he will be woken up at and negotiate that with him if giving him some control in this helps. Use positive and negative sanctions as mentioned in other posts. You may well find that things do get worse initially, his status quo has been changed, you are forcing him out of his comfort zone, he's bound to react but stick with it. One thing I would say is do it know whilst he's this age, when the things that you do can really make a difference and help him in the long term. In a couple more years behaviours become that much more ingrained and difficult to change, he is physically bigger, puberty has well and truly kicked it and it is so much harder then to make a difference

 

Take care and good luck

 

Lx

[chris54]

I'm not suggesting you do this but I remember that it was my brother who always had the problem with getting up.

One day my mum got so fed up with it all she got a bucket of water and threw it over him in bed and then just left him to it.

I think after that he got up on the second call .

 

 

I think Iv done it again.

 

NO NO NO

 

Don't do as my mum did.

 

I was just being a little light hearted about the way people use to treat their kids and at the time no one thought there was the slightest thing wrong with it.

 

I am talking about 40+ years ago.

 

I am sorry if any one really thought that I was suggesting that any child should be treated like this.

[Esty]

My 12 year old is also a school refuser and had terrible trouble getting up. You can't 'force' them because it does end up getting physical (he used to attack us, barricade himself in his room etc). When we found out these outbursts were panic attacks caused by his severe anxieties about school it made a lot of sense that the ususal tactics would not work.

Firstly, we stopped pestering him to get up. It was horrible as we felt he was 'getting away' with something BUT it turned out that the reason he couldn't get up was because (a) he had no reason to ( it reminded him of school © he was so anxoius about sleeping at night (bad dreams, mind racing etc) that he was genuinely tired in the morning.

Now, amazingly, he is back at school part time. He is allowed to stay in bed while his brother gets up and I only wake him once I've got back from dropping his brother off. He does cut it very fine though as he is willing to forego brushing teeth/ hair, getting breakfast etc but you have to choose your battles. I had to accept he was going to school like a dirty scruff because he was actually going to school!!

Two things we did, but one might not be practical!! Firstly, we stopped rewarding him with money and started using points. for some reason this worked for him - previously he would think ''ah well, I've lost 20p but I've stayed in bed, no worries''. Now he can only get things by earning points - these translate directly to money but he feels less 'bribed' so more co-operative. He can earn 100 points per day, an extra fifty if he goes to school. He never sees actual money - he works out how many points and we buy something for that amount. If he doesn'tchange his underpants he loses 10 points, same for not doing teeth. He can't get these points back by being good later. It has taken a while but we have stuck with it. When he realised if he'd have brushed his teeth on all those days he would have got an extra Warhammer thing, it started to add up for him.

The other thing was addressing why he wouldn't sleep and this is less practical depending on your circumstances!! We have two six month old pups who until recently always slept in a crate downstairs. Then they started objecting to being in the crate and I didn't want them in with me. They now sleep in my son's bed and the result is amazing. he will turn the light off at a reasonable time ''so the dogs can sleep'', he is less fidgety, doesn't object to going to bed and has even started listening to music or audiobooks at night intead of watching TV. He is so relaxed we can't believe it, because he feels safe with the dogs there. Obviously I wouldn't recommend doing this with young kids or aggressive breeds/ problem dogs. J didn't realise himself he was anxious about bedtime, it just came out in his behaviour. When the dogs get up, J wakes up naturally. The other benefit is that before he wasn't getting any exercise but because he will come out with the dogs he is getting physically tired and so sleeps better at night. Like I said, not a cheap or practical option but it worked for us.

 

As others have said, they act like they want control but they want someone to sort it out for them. J has completely stopped being physically violent because he realised it didn't work, but it was horrible for ages. I had days where I had to stand in front of the TV stopping him from turning it on because he had a sanction. He would physically attack me and of course it meant I couldn't do anything either. He's hidden things of ours (I found my keys behind his wardrobe after ''losing them'' months before..) My husband has driven to work with the PS, Xbox and DVD player in the boot so he couldn't get them! It takes them a while but they do eventually get it. Of course my son needs careful management otherwise these things would surface again but for the moment I feel we might be making progress and I'm sure your son will too.

[westie]

Stragely enough a while ago, I was reading some old diaries I kept about J when he was about 4 and being assessed by CDC. At the time he was having trouble sleeping (night terrors) and this had been going of for a good couple of months and I wrote about letting our little dog, Oscar, sleep in his room and this settled him, until a certain time say around 6 when dog wanted to go pee, and then J would start screaming and getting angry because he wanted him to get back on the bed!

 

Sadly Oscar passed away last year at age 13, but we have another dog, Seamus (who we have had as long as Oscar, and who is missing his buddy who he has always had around to keep him company ), and we have let Seamus sleep on an old sheet on J's bed a few times recently when he has been unable to sleep (nowadays J leaves bedroom door open, and doesnt wake when dog moves fortunately!)

 

It is worth exploring possible reasons for him not sleeping properly. Another thing that affects my sons sleeping pattern in playing on the computer too close to bedtime. Even if he switches off and gets into bed at 8.30 his mind is on the game, and I am sure he dreams about them and it does mean he is not getting adequate rest. This is another reason that I use the "rules" (my hubby also into games, and he has told me that if he has been playing a "strategy" game such as age of empires he will spend most of night thinking/ dreaming about it and I think maybe thats what J does too.

[LizK]

Another thought is is he going to sleep early enough? Agree with Westie about limiting access to Pc, games machines or other screens before bedtime that might over stimulate him. Does he have problems getting off so sleeping in later to compensate? Would something like melatonin at bedtime help him if this is the case? I'm not saying for one minute from what you've written that this is the answer to your problem. However trying to tackle the issue will be that much harder if he is going to bed too late or genuinely isn't getting enough sleep so might be worth rectifying that first if necessary then dealing with the mornings

 

Lx

[Mandapanda]

Hi

 

There are some interesting replies here, thanks everybody (even those I don't agree with!).

 

Aw goes to bed more willingly than he used to, at around 10pm. That may seem late to some of you but he has always gone to bed at same time as big brother. At one time we had a battle to get him to settle at all even at that time. Now his mood is better than last year, he is easier to get to bed. I still read a story to him and then he reads or goes on his PSP/DS. He does not watch TV or go on computer at night.

 

He often doesn't sleep until 4-5am, he just literally lays awake all that time. I know this because for 5 months I was sleeping on a mattress on his floor, due to his panic attacks at night. I am now permanently back in my own room, thank goodness! CAMHS thought it terrible I was in his room but I knew he would get over it when he felt ready.

 

He wants to get up at a reasonable time. He was very pleased last Weds because he got up at 9.30am while I was at work. So he is not deliberately staying in bed as such. He is scared of dogs (shame though because I can see it would be great), and there is absolutely no chance of him taking any medication.

 

I collapsed in heap at the weekend and am now unwell with depression, so we are not doing anything at the moment, although today when Aw really woke up at gone 12noon he said we should have woken him at 9am. So we will go with his wishes at present. GP and school are trying to get us more support.

 

I do believe that because of the improvements he has made himself (me going back in own room, him eating more regularly, and him wanting to get up at reasonable time), that we should encourage him to make each change as this will make him feel better about himself. There is zero chance of him going back to school, and I am now of the opinion that he shouldn't have been at an ordinary secondary school anyway.

 

When I am well again I will of course review all your suggestions (if they are still required), so thank you for taking the time to give them.

Edited April 1, 2009 by Mandapanda

[Karen A]

<'> <'> <'> Hi.I have come late to this thread.I do not pretend to have any advice or answers.I do want you to know that I am sure you are not pathetic.I am articulate intelligent and used to be a community nurse myself.I have a supportive partner.We have weekly support from CAMHS .However we have very similar problems getting Ben up in the mornings.It appears he may manage a week of school this week for the first time in several weeks.

We have tried most of the suggestions offered here including removal of x box,television etc etc.We ended up with a misserable young man who had lost all stimulation and was even more isolated which proves that although sanctions may work it is not always the case.

Ben is doing better this week because he is a bit happier at school and feels he has something to get up for.However it has been a very difficult time.I think that coping at home with a child that is feeling low and cannot find anything to be motivated about is difficult for the most committed of parents.Karen.

[smiley1590]

i have AS and MH probs (depression,anxiety) i know how hard to dealk with them day in day out but i do like someone else said routine is important in an autistic's life in more os if they have MH prob alongside that which doesn't help their mood etc but having something to do during the day has helped me work through and not let beat me down! my nans are dying so i know how difficult to cope with that too can be so stressful like someone said probably is all bout not feeling safe and secure and well enough to deal with alone get scared! ahhh! over so much stuff!

 

good luck

take care

XKLX

[smiley1590]

i find very difficult to get up in mornings i think half down to your age typical teens stuff (stereotypical) and half AS and MH probs cause we don't get enough sleep hours so we have to catch up on it later! having MH probs also makes you more tired less energy but people with use alot more mental energy which can lead to burn out where can't do anything whatsoever literally! i get it myself!