I can't cope with DD anymore

[DepthsUnknown]

I don't even know where to start because my life feels like a giant mess but one of my biggest issues is my 8yo DD.

These are the problems:

• she is angry, what feels like all the time. Once she is in the throws of a tantrum, it is very hard to calm her down. We usually put her in her room and it will take upto half an hour for her to calm down but often she will lose it again quite quickly and this can go on all day
  
• she is violent and will hit, kick and throw things in the house (this is everyday). She's broken so many things. Often the violence starts when she gets frustrated at herself or when she can't have something she wants immediately or if she can't do something she wants to do (either if I say no or she finds it difficult or it doesn't go how she wants it to - failing at computer games and her drawings 'going wrong')
  
• she is constantly screaming, shouting and swearing at me. Every other word is 'fuck'
  
• she is incredibly unkind and nasty to her younger DSis. She seems to get pleasure from upsetting people and will smile or laugh if we tell her she is being unkind. She is often rude to my friends and their DC.
  
• she is anxious a lot, worries about things
  
• she is generally unhappy and when I talk to her about it she will say that nobody loves or likes her and she is rubbish at everything. She often complains that she has no friends but her school say this isn't the case? Other times she will tell me everybody is her friend. She goes through phases where she threatens suicide and I once found her in her room with a belt around her neck
  
• she is constantly complaining about being in pain, her foot hurts, her legs hurt, her back hurts. Even paper cuts seem to cause a lot of distress
  
• she's very particular about clothes and the way they feel. Socks annoy her and her trousers have to be tight fitting but her tops have to be loose
  
• she is overweight and no longer fits most of her school uniform. She may even be obese at this point (I haven't weighed her)
  
• she's an incredibly fussy eater and is gradually eliminating entire food groups. She has refused to eat potatoes or potato products for years but now will no longer eat rice or pasta. She only seems to like bread.
  
• she's decided she doesn't like certain people. Refuses to see her dad (although I think some of her reasons are genuine), no longer likes my DP, now she tells me she hates me
  
• she is incredibly black and white about things, refuses to compromise, see things from another perspective or humour in things (she's quite literal). Her version of events is often very different from reality but you can't persuade her that things aren't quite the way she thinks of them
  

I have asked for help on a few occasions. We've had two CAHMS referrals from my GP but both times I was told her issues are behavioural and I should read a parenting book (specific one suggested) or get a family support worker. After that we paid for private counselling but I can't afford it abd she hated going. Only once has she lost it at school and she's doing quite well academically so they don't have concerns. After the incident at school (which included her throwing rocks at classmates) we were referred to a play therapy place for one term. I was self employed at the time so was able to take her (during school hours) but my employment has changed now. It was helpful in that it seemed to improve her self esteem but her behaviour was still poor. I believe we can ask for her to be sent for one more term but then that's it.

I don't know what to do. I'm ill and struggling anyway and I'm totally out of my depth. I often resort to just screaming at her because I can't cope with her behaviour but I know this is wrong and isn't helping. What can I do? Nobody wants to help me. I sometimes feel like telling her dad to have her full time but she hates him and I doubt he would be any better at helping her.

Can someone please suggest something? I'm at the end of my limited resources.

[Melawati]

My DD is on three types of medication now. She takes melatonin to help regulate her sleep (makes a significant difference), a medication for anxiety and an ADHD medication which she has just started recently.
Without the anxiety medication (which also helps with depression to some extent) she wouldn't have been able to access the therapies that have ultimately been pretty successful in helping her to cope with her anxiety and find other strategies to help with her low mood.
The ADHD medication has helped break the cycle of impulsive behaviour and negative feedback that was affecting her ability to get along with others and manage her behaviour at school and in the family.
We tried a lot of other strategies before medication, and had a fair bit of therapeutic input before medication was suggested. But DD's mental health deteriorated so rapidly that I do feel medication was absolutely necessary for her. It took the edge off the extreme feelings, it didn't make them go away.
But all children are different, my younger DD with ADHD isn't medicated, I don't feel it's right for her at the moment.

[Cartooner]

I just finished reading a book called Beyond Rainman. I haven't read this entire thread but your child sounds like mine so much (minus the self harm aspect) and he is ASD/ADHD diagnosed. I am finding him very difficult but medication has really helped. He also does fine in school mostly but my diaries and private diagnosis from a specialist convinced CAMHs, The book I refer to was written by a psychologist specialist in autism who didn't recognise high functioning autism in her own child until he was 11. They put all the anger and meltdowns down to sensory.

Also listen to this www.bbc.co.uk/programmes/p0312292

You are not alone. Don't despair.

[Msqueen33]

My seven year old has medication for her ADHD. I was reluctant but it has made a huge difference. You can always take her off them but at the moment it sounds like you're at bottom.

I'd maybe talk to school about some simple things that are strategies for kids with asd and use them for your daughter.

[DepthsUnknown]

Thank you Melawati, that gives me hope that my DD will eventually learn to control her anxiety but yes, I find it all so awful and exhausting. I think part of the problem is that we keep being referred to services and I get my hopes up but it's just continuous 'interviews' with no real tools or resources that will actually help so I don't feel any better off and actually, just talking about it is stressful for DD.

MsQueen, the school aren't doing anything specific with her, they're just acting as the referrers at the moment. I keep being offered services that we can't access as I work. They're also trying to get me a family support worker and counselling which just makes me feel like they're saying I'm the problem. They seem so dismissive of my concerns re ASD. Why are they so reluctant to do the assessment? I just want answers so we can be certain of which strategies to try.

Does anyone know if I can ask for her to be medicated separately from the intervention by CAMHS? Are there any side effects or things we need to be aware of? I'm slightly concerned about medicating a developing brain but I will consider it as a last resort and better that than her being harmed physically or worse. I called my GP a coupe of days ago to ask if there's another route to assessment but she didn't know abd so far hasn't got back to me. If I had the money, I'd go private.

[Msqueen33]

Also what are the school putting in place? The meltdowns are obviously showing she's under stress. How are school reducing that?

[Melawati]

Keep going back to A&E. it is an awful, awful thing to have to do with your young DC, and I had some of my worst encounters with professionals there, but it was the thing that got DD the intensive help she needed (and she was already being seen regularly by Camhs at that point, but they needed evidence to refer her up the tiers).
It's very hard, I'm not going to pretend it isn't, but DD today is so, so much better able to cope with her anxiety and rarely self harms at the moment.

[DepthsUnknown]

Thank you both. I know there's nothing anyone here can say by I appreciate having a space to talk about this. I feel like I've been plunged into a world I don't understand and I'm having to learn the rules by trial and error. I guess most people go through this when they have a DC with additional needs.

I got home last night and a police card was on the doormat. Thank god DD didn't see it first. They're not sure why an officer visited but it could have been catastrophic for us. I'm so angry that some of the professionals are inadvertently making this harder for us.

DD again disclosed some of her issues at school so they're trying to escalate our tier two referral. Tier three have referred to social services but the initial worker is insisting they do a joint assessment. No idea when that will be.

My manager took me for coffee this morning as she's noticed I've not been myself and my work is suffering. They've offered support with the potential to reduce my hours so I'm thankful for that.

No meltdowns yesterday or today from DD although she was being difficult, refusing to get ready for school, being unkind to her younger sister, punching me in the back on the way to school and calling us names.

[Msqueen33]

I'd keep going back to A&E. My nt dd is your girls age and my asd dd with seven so not much younger. It must be exhausting and heartbreaking. I would look into counselling and also ask for anxiety medication. If behavioural intervention isn't working I'd look at medication to try to calm her so you can find ways to help her.

[Areyoufree]

I wish I had some useful advice for you. Just wanted to say I hope today has gone better, and that you get the help you need. My instinct would be to keep taking her to A and E - they may keep her in under observation, which could get her seen by someone who could help. My friend did this when her daughter kept threatening suicide, and it did seem to help as her daughter realised there are consequences to threatening suicide. Plus she got referred for counselling. However, her daughter was a bit older than yours, so I can understand you being reluctant to do that. And services vary so much from place to place.

Anyway, just didn't want to read and run. I hope you all have a better day.

[DepthsUnknown]

Sorry, I know it's bad etiquette to keep replying to your own thread but I just feel so alone right now. I feel like we are marching fast towards a full blown crisis.

I threw in the towel tonight, I just couldn't do it. DS(17) took over but he ended up in tears (I've never seen him cry like that) because he couldn't bare to hear his little sister say she wanted to kill herself.

We eventually calmed her down so it was around three hours of the worst meltdown yet. She was lurching from one self harm attempt to the next, trying to smash her bedroom window, tying things round her neck, looking for knives. We usually put her in her room to calm down but not even that worked. We restrained her in the end and that did the trick.

After talking to her, it transpired that she was worried about the police coming (thank you CAMHS guy) and also that the children in her class are being unkind be to her, maybe even bullying her. I will speak to school tomorrow about what she's said.

Make that one step forward, five back. The worst thing is, it's really put me off going to A&E when she's like this as the appointment this morning has only made things worse and we don't actually have at help to show for it.

[DepthsUnknown]

She's been fine all day until I picked up youngest DD and has been melting down ever since. Currently in the throws of one of the worst meltdowns yet, tied a rope belt around her neck (didn't know it was in her room) and is screaming that she wants to go to A&E.

I have work tomorrow, I'm ill and tired. I don't want to sit in A&E for hours with her just for them to make me agree I can keep her safe. I don't think I can but what happens if I admit that?

It's too much. I don't know how anybody copes with this. I'm almost at the end and I know it hasn't even really began yet.

[DepthsUnknown]

It really angers me that everything is a 'home issue' until it is seen outside the home. It's like it's only that bad once someone other than a parent witnesses it

Exactly this. I've been telling the professionals for so long that she regularly talks about suicide abd attempts self harm but they've always been meh in their attitude. I think they are viewing it as attention seeking. But even so, my biggest concern is that she'll be successful whether she intends to or not. She is out of control during a meltdown and she is clearly in a lot of pain. The suicide talk and attempts are a clear communication of this but they're more concerned with whether she actually means it or not

I was having a bit of a laugh about it with the manager of the after school club. We were saying as bizarre at it sounds, it's almost like 'yes! She's said it at school' .

[DepthsUnknown]

Thank you everybody. It really helps to come here and know that there are people who just 'get' it.

I watched the documentary Born Naughty over the weekend. It was the episode with honey and the little boy with the hearing aid. So much of what DD does reminded me of Honey but there were also things that didn't fit. I would have said that the boy had adhd but they said he didn't on the programme. It's all so confusing and I just want to know one way or the other.

DD had a difficult weekend. She was rumbling and melting down from the moment she woke up all day through to a spectacular meltdown at bedtime. She didn't get to sleep until very late. I have a general idea of what sets her off and if she starts rumbling, we can predict the exact sequence of events thereafter. I'm not sure what causes the particularly bad days as she seems to wake up like that. I have wondered if she might be hitting early puberty. I know it's more common in overweight girls so it could be that. I also had a lightbulb moment this weekend when I realised she likely has hyper mobility. She's always been very flexible and can do the splits in both directions and can also kick her legs above her head which is particularly impressive given how overweight she is. I read it can also cause aches and pains in the limbs and joints abd this is something DD very regularly complains about. It's not something I've given much thought to before but a little bit of googling has shown there's a connection between ASD and hypermobility.

We had our CAMHS tier 3 appointment this morning but it didn't go well. The worker was a young guy who came across as rather odd - he wasn't very warm or particularly good with DD. It felt like he didn't know what to suggest but he was implying through his questions that we aren't consistent enough with her. DD put him straight though when she said 'mummy never gives in' . I did smile internally as id been talking about how literal she can be and when I said we walk on egg shells a lot, she said 'but we don't eat eggs' . The CAMHS guy then tried to explain it to her and when he thought she'd got it, she again said, but we don't like eggs so we won't be breaking the shells. Yeah, like I said - literal I was telling him my concerns re ASD but he didn't seem keen to explore that although I guess we were mainly there to talk about her self harm attempts. All he could recommend was that we continue doing what we already do by hiding knives and minimising her opportunity to self harm and take her to A&E if she does make an attempt. He also suggested we call the police if she is violent and that really upset DD who then refused to engage further and got very upset. I thought he could have been more discreet with that as she may refuse to engage further with CAMHS now when so far she's been ok.

One step forward, one step back

[youarenotkiddingme]

I'm so sorry things escalated but I'm pleased now others have seen it you are accessing more support. Good luck for the appointment on Monday.

It really angers me that everything is a 'home issue' until it is seen outside the home.
It's like it's only that bad once someone other than a parent witnesses it

[Areyoufree]

Hi OP. Am by no means an expert on any of this, but there was a channel 4 documentary called "Born naughty" where they evaluated children with potential developmental disorders. One of the children, a girl about your DDs age, was diagnosed with PDA. The series is still on 4oD, and it might be worth watching it, to see if it rings any bells with you. The parents were at an absolute loss, and had been told the same things as you - behavioural, need to be stricter etc. After evaluation, they all got the help they needed and things improved a lot. It sounds like such an awful situation, and I hope you find the support you need soon.

[Msqueen33]

Big hugs. With all due respect to the professionals they aren't perfect and it's a spectrum for a reason. There could be a lot of mental health issues alongside the asd or it could be that her she doesn't know how to express her feelings due to the way her asd makes her perceive the world and it's her way of expressing herself. I'm not saying ignore this at all.

Glad to hear things are moving forward. If she threatens hurting herself I'd go straight to a&e. My eldest dd is 8 and middle dd is 7 and it must be devastating to hear this.

Check out the girl with the curly hair - she's written a book and also Sarah Hendrickx. Both are on Facebook and twitter.

Are you keeping a note of what seems to set her off? Could you consider fluoxetine as that might level her moods out.

Big hugs to you.

[DepthsUnknown]

Another update from me. We've been through a relatively 'calm' period with DD meaning that she's been threatening suicide less but she's still been having meltdowns daily. I've been trying to sort the house out as it's got into a bit of a state as my illness has meant everything has got on top of me, so I think this is having a positive effect on everyone.

However, there was an incident at school today and she was threatening suicide at school. Despite the fact that I've told them she does this frequently, I think it shocked them and they called CAHMS and MAST before they even notified me. The first I heard was from CAHMS tier 2 who asked a few questions, then said they were happy to leave us until her appointment in July.

I then got a call from school who said MAST had said I must take her to A&E. The hospital contacted the duty worker at CAHMS tier 3 who have made her an urgent appointment for Monday morning on the proviso that I agreed I could keep her safe over the weekend.

I feel a bit numb really. I guess this is progress of sorts as it feels like they're taking me seriously now but also DD's behaviour is spikling out beyond the safe confines of home and I know that means it's getting worse.

I'm still really unsure whether ASD is at the heart of her problems. Sometimes I'm convinced, other times I question myself because so far the 'experts' have said no (not that's she's been assessed at all but I feel like they would know). I was at a local offer event recently (for work) and got chatting to a couple of parents from NAS who had a stall there. I was talking about some of the things DD does and they were nodding in agreement. They all recommended I read a book by Tony Atwood as this had been the lightbulb moment for them. So I'm going to do that ASAP and make a renewed effort to keep a diary.

I'm just so tired and confused and overwhelmed.

[Msqueen33]

You sound like you have a lot on your plate. I often feel I get lost in the haze of asd and sometimes you get so worn down by the behaviour it's hard to pick yourself up.

I'd get a notebook where you can jot everything down. Advice, suggestions, contacts. I would look at your councils local Sen offer as that might lead you to other services. What county are you in? I've found with my 7 yr old with asd we've had to be very firm and that she needs constant boundaries on what is and isn't accept. We're also quite blunt. And meltdowns have settled down. She has a lot of sensory issues around noise but it is a long and what feels like ongoing battle. Nothing is ever easy. My youngest struggles going anywhere apart from parks or soft play. We can't eat out.

We're in Essex and they have a good beginnings course all about autism but most county's have the early bird course. Speak to your senco. They should know who you can get in touch with via the council to help.

For mine it's about sameness and routines. They're not fond the unaccepted and need advance warning (visuals, verbal warning).

Big hugs especially as you've got health issues. I've found two children with asd has led to depression and its very hard.

Dogs I've known a few people who have found it amazing including a dog. We had a dog who now lives with a family friend as although my dd loved him she wasn't great with him.

[DepthsUnknown]

Thank you both for replying. And Msqueen for thinking of me .

I think I will call CAMHS on Tuesday and let them know about her more recent behaviour. I know I need to be a better advocate for my daughter but I'm ashamed to say I don't like to make a fuss and generally just accept what professionals say.

The other problem I have is that DDs issues are not the only thing I have on my plate. In particular, my health is quite poor and it severely affects my energy levels and memory. Whenever I post on here, I have renewed determination to get this sorted but then something else happens and I forget what I was meant to do. Reading back through this thread, I had forgotten about the advice to take her to A&E if she was suicidal, for example.

I think half the problem is that I don't really understand ASD, the terminology, the treatments, help etc. It feels like too much to get my head round. I'm almost putting it to the back of my mind whilst I wait for someone to agree to assess her and dealing with her behaviour as it arises (not that I'm dealing with it very well). I've asked to do a distance learning course about autism through work so hopefully that will help. Knowledge is power and all that.

It was another awful morning. I made the mistake of calming DD down last night by saying 'think of the Easter eggs you'll get tomorrow'. The Easter bunny still brings them in this house and as I'm conscious about DDs weight, I got them just one egg and wrapped a couple of new outfits for them. DD woke up at 5am and as I have insomnia, I'd only had about an hours sleep. She demanded I get up so she could open her presents and when I refused, she had a two hour meltdown, most likely waking the neighbours. Once she'd opened the presents, it was like it had never happened.

I suppose at this stage I'm so focussed on finding out what's going on/getting an assessment that I'm not thinking too far ahead to the future but when I do, I just can't imagine it always being like this. I'm very aware that a diagnosis is just the first battle in the war, getting treatment is the next and that's just as hard to fight for. How does everyone cope with that?

I'm also staring to think about the ways in which our life might be curtailed by DDs issues. For example, I really want us to get a family dog and waited until both DDs were older. DD is desperate to have a dog and I also think it might help DD to have a companion so to speak. I would get a rescue older dog rather than a puppy. But DP is dead against it despite agreeing initially as he thinks DDs issues are too severe. I see his point but I worry it will always be like this and we're all potentially missing out for that reason. I might post a new thread about how families with ASD have found adding a dog to the family.

I suppose this is me coming to terms with the fact that this is going to be a lifelong deal and not just a case of getting help right now as I had initially thought. Apologies for the random stream of consciousness .

[LouKout]

I think you need a referral to.someone else other than this CaMHS woman. A paediatrician maybe? Eye contact does not in any way rule out ASD.

[Msqueen33]

Hi Op, I hoped you'd be back and things would have been more positive for you. I have an nt (tho some ADD traits) eight year old so know they're tricky at the best of times. Plus a 7 and 4 year old both with autism and ADHD.

I'd ring cahms if she's self harming and demand immediate help though I know the service is stretched. Straight back to Gp to refer to a paediatrician and talk to your senco. Explain what's happening and ask the school to get involved.

You could self apply for an ehcp. For that all you need is a case of the child having Sen or maybe having Sen which is the case.

Personally I'd cut contact with her dad until he gets his arse his gear. He sounds dreadful and is probably making it a whole lot worse. I imagine doing it on your own is very tiring and stressful. Do any other family have any input?

Social stories might be a good one. If there are constant issues around the same thing. Eight year olds are difficult when they're nt so emotions are probably running high.

I'd also keep a diary to see what her trigger points are. Also look into a sensory diet. Deep pressure, a calming routine you practise when she's chilled over and over so you can use it when she's depressed. I'd also try to channel her towards exercise. I self harmed when younger because the anger had nowhere to go and I couldn't regulate my emotions properly. Also have a look at the book The explosive child.

Big hugs.

[DepthsUnknown]

Hi everyone, I'm back with another update as DD is getting worse.

We saw CAMHS a couple of weeks ago and thankfully they've agreed she can have 8 sessions with them. They start in July but honestly, I don't know how we'll cope until then. I don't think it will be enough in any event. DD mentioned that she has no friends and the CAMHS woman told me to ask school to work on this with her. However, I explained that school say she does have friends there and it is more her perception. I said a lot of her problems stem from her interpretation of what is happening rather than what is actually happening iyswim. I mentioned that I think she may have ASD and sensory processing disorders/PDA but the CAMHS woman said she was able to make eye contact so she doubted it. I'm still veering between feeling very strongly that she has some underlying issue and thinking it's anxiety caused by her environment (read me).

ExSIL recently got in touch with the aim of getting the girls' relationship with XH back on track and agreed to help him work on the issues that stop them wanting to go. DDs agreed to go again. First weekend went OK as exSIL was involved but second weekend went terribly and basically SS have advised I cut contact. Low level neglect (not bathing them, not changing their underwear all weekend, not providing adequate meals and some more serious stuff including leaving them alone on the house abd driving them home whilst likely over the drink drive limit - 6 pints according to DD1). Both DDs again saying they don't want to go anymore.

DD continues to melt down daily. Things are now escalating though. She had a meltdown over a kite at the park and screamed in the face of a little girl before pushing her over. She continued to melt down for hours once home and was in and out of her room for calm down time but it made no difference. She was saying all the usual about nobody liking her etc. and she wrote a poem about having no friends. She then started trying to self harm which she's tried to do before but not to this extent. She was running into the road, trying to grab knives, banging her head against a wall and tried to pour a kettle of boiling water on herself.

She's in so much pain and I don't know how to help her. I feel so desperate but I genuinely don't know what to do to help her. I feel like we're just treading water until something really bad happens. I don't know how to get an assessment for her either. I think I need to go back to the GP and demand they do something because we can't go on like this. They are crap though so no idea if we'll get anywhere. There are no education psychologist in my area. Is it worth going private? Has anyone done this and found it helpful? What else can I do?

[BarbarianMum]

Thanks for your update. How are you doing with accessing an ASD assessment for your dd? Have you tried asking your GO for a referral to a developmental paediatrician?

[taratill]

Really feel for you. I am going through similar with my DS who is 10 who is now being assessed for ASD. I could literally have written most of your OP the only additional thing for him is that he can't cope with being at school.

We exhausted 'supernanny methods' against advice and going on family members suggested. It did make things worse so please don't do it. We have now removed the demand (school) and he has started to relax/ come down which has made home life easier for the time being.

You are not to blame and you need help/an assessment for your daughter.

[Msqueen33]

Oh you poor thing. Do you use any visuals or social stories? I think kids with Sen often put a huge strain on relationships. Especially when there some partners have little insight into the condition.