Parents, carers and disabled parents
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Angry outbursts

fairywishesfairywishes Member Posts: 25
Hi my daughter has a rare chromosone disorder and has general delay. She is 6 and this year her Dad & I divorced (after he had an affair) which has caused a lot of upset. I don't understand how much she understands about breaking rules so when to let her off. She also gets very very tired and then if she doesn't get her way she shouts, hits and throws things. The problem is even when asking her what she wants at this point she still throws things. Her 4 yr old (typical) brother tries to hug her but she hits him. I've tried so many places for support - CAMHS, Social services etc. but to no avail. I do not want a parenting course I want someone used to disabilities to advise me on her specific needs.

Replies

  • WillowWillow Member Posts: 18
    edited June 2014
    Have you read the posts about carers; you need to look after yourself too.
    For Ciara, maybe a social story, or photos on lolly sticks or puppets to reinforce although you have split up, to reassure her she is still loved.
    Extra exercise may help.
    Relaxation may help eg "Relax Kids" CDs look lovely
    Reward systems are good.
    A trick to distance yourself emotionally is to imagine it was a friend of Ciara acting like that.
    I think when your confidence returns, you will have the courage of your convictions more.
  • msderminamsdermina Member Posts: 2
    Hi my daughter also has a rare chromosone deletions (18q del ) are you a member of UNIQUE a group of people like us. I think they have the link on the front page. If not it is something like rarechromo. They may be able to help, or you could put a request into the newsletter for help and advice from other families similar. You may also find some one with a similar chromosone problem.
  • fairywishesfairywishes Member Posts: 25
    Thanks yes I am a member of Unique have been for over 5 yrs, I think they are fantastic. Just issues relating to behaviour I haven't found any help I can actually use. I need to work out what I should be living with & to try to explain things to her. Thanks for replying
  • EmmaEmma Member Posts: 88 Connected
    Hi msdermina, did you look at our Challenging Behaviour info pack, you might find that useful. http://www.thecbf.org.uk/ might well be able to help with this problem.
  • fairywishesfairywishes Member Posts: 25
    Thanks but Ciara can talk and although has global delay the challenging behaviour foundation thought that they deal with people who are affected more than Ciara. They did send me their information pack. I suppose the problem is as a teacher and a helper/trustee of a charity for pre-school children with special needs I don't need general advise I want specific help for me with Ciara. How do I helpher deal with her anger when she doesn't understand. How do I stay calm. How much do I push for behaviour & how much do I let go - I get some people saying I let her get away with stuff but then others saying I'm too strict. How do we deal with it on a daily baises
  • JimJamsJimJams Member Posts: 175 Listener
    I am so sorry you are struggling to cope and I hope my experiences can help you in some way. When my autistic son is angry I have to judge just how angry he is an adapt my approach. If he is too far gone and will not listen, I leave him in his room or wherever he is to calm down. Have to make sure the environment is safe, locking doors etc, put a distracting cartoon or something on, outdoors I will repeatedly show him a picture of a toy he likes or a shop he likes and say we will go there if he calms down, once I get his attention I say in a calming voice, "calm down" and do deep breaths and encourage him to do the same. I always say I understand you are sad or angry and I am sorry you are sad or angry. I also have some social stories printed out showing a worried mums face or a sad face and no hitting sign etc. I have got to stay calm or the situation escalates beyond control. Repeating mummy loves you and mummy knows you are sad and shes sorry you are sad seems to help calm him down. I always keep in my head the need to stay calm myself, distraction techniques and remind myself the main priority is to get out of the situation with myself and my son unhurt. Hope this helps in some way.
  • fairywishesfairywishes Member Posts: 25
    Thanks Marie I really should try to do that, I suppose I get swayed by people - even my new partner - who thinks I should get her to behave more and not use her disability as an excuse. I don't think I do this, I'm quite strict but she is different than others so she can not 'conform' so easily. I will print out your reply to remind myself of other ways of dealing with it. When I'm ok it's much easier but the last 18months (affair/divorce) have made me so tired, emotional that I have lost it with her and shouted, even smacked, more than I would like to. Ciara doesn't seem to get distracted that easily and when she's tired she will just kick/scream even when asking her what she wants to do - but I must remember to repeat calm down to her. I wish there was somewhere she could go /talk to that would help her understand her anger.
  • JosieBJosieB Member Posts: 2
    Hi Fairywishes

    Just recently joined and reading this thread and it reminds me greatly of the issues I have had with my son who is now 15 but was diagnosed with Aspergers when he was 7. I have found that Tom is a visual learner and the use of laminated instructions about the house have been a great help in enforcing rules such as "no hitting" "no kicking" etc (you could adapt these to the behaviours Ciara is exhibiting). It's a case of sticking to your guns. Also like someone else said above, if Tom has completely "lost it" I also usually leave him in his room to calm down and then speak to him about it when he is calm.

    I also wondered if her reaction to her brother's hug is a sensory issue. My son doesnt like physical contact unless it is initiated by himself (and that's very rare). He prefers much more intense physical contact (bear hugs, strong grips etc ... another sensory issue).

    I can certainly identify with the dilemma of not knowing what is a trait of our kids' condition and what is just bad behaviour, but after struggling with this I have adapted the stance that if it's not acceptable behaviour for my other children then I have to address it with Tom ..... I do find though that it takes much longer for Tom to process information and therefore perseverance is essential.

    Tom also had a couple of anger management courses through the local child psychologist (one aged 7 and another when he was 11) and these provided him with various different possible age appropriate techniques that were more acceptable than physically abusing others and destroying possessions (his and others).

    We also instituted reward charts for the whole family with small achievable rewards at the end of each week dependent on the level of adherance to the tasks and behaviour outlined in the charts .... it was extremely helpful that everyone in the family was involved and Tom didnt feel as if he was being singled out.

    Hope something here helps.

    Josie
  • fairywishesfairywishes Member Posts: 25
    Thank you Willow for your concern regarding me. I am just still so tired, but I hope to get out of that soon - well one day. I will do some cards or social stories. I also think for after school I'll do a visual timetable. I've been so tired thinking of doing anything is too hard I don't really know where the time goes when I don't have the children.
    JosieB - I really do think if it's not acceptable behaviour for a typical child then it shouldn't be for my daughter but it's more whether she is deliberately being naughty (e.g. getting down from the table) or if she really doesn't understand that she shouldn't. I haven't really done rewards because she doesn't seem to be able to grasp the reward (or punishment) was for something she did earlier - it has to be instant.
    I've been asking for help for over a year with CAMHS and social services etc. I really want her to go on an anger management course run by a child psychologist but I can't find one and no one seems to be there for me.
    Thanks for all your help. I am going to dedicate next Monday to preparing some signs & things for home use.
  • TeresaTeresa Member Posts: 24
    Hi Fairywishes

    My autistic daughter sometimes gets angry or upset for reasons that are not immediately apparent to me. However, I've certainly found that my own anxiety and mood can affect hers. Your daughter may be very sensitive to how you are feeling but have no way to express it other than by behaving 'badly'. It is also worth remembering that she may actively be seeking your negative attention (shouting etc.). It is easy to say, but I find that if I can find it in myself to relax and take a step back, my daughter usually calms down far more readily than if I shout at her or tell her off. (I'm not saying that I always manage that level of serenity, by any means) I do hope things get better for you and your family, it sound as though you're going through one of those tough times. best wishes, Teresa
  • RuthGreenRuthGreen Member Posts: 6
    Hi Fairywishes,
    I am not sure from your posting if you have actually seen your local CAMHS team. We were desperate to see the CAHMS team and it took us a year to get an appiontment. When we finally came to the appointment I told the professionals how long it had taken us to get to them (through the awful processes of one referral to another etc) and they said if we had emailed them directly they would have made sure we got an appiontment with them. Since we got to them they have be fantastic, so helpful. Just wanted to let you know just in case one of the issues was difficulties getting to see them in the first place. Just another thought for you, this one is probaby a bit difficult for you. But you must take care of yourself. My son picks up my moods immediatly if I am stressed or tired the worse his behaviour is. Good luck
  • fairywishesfairywishes Member Posts: 25
    Thank you Teresa, I'm a teacher and have attended many parenting groups through work I did with a special needs pre-school group. I know to try and step back and to reward positive behaviour & to ignore bad it's just so hard when we're out in public or it's something she really shouldn't be doing or I'm so tired. I'll keep working at it too. I need to get more sleep & to not get so angry and I'm working on this.
    Ruth - I have still not seen CAMHS and it is definitely their team who are stone walling me, my Paed, GP & school are all annoyed at how little response we're getting.
  • TeresaTeresa Member Posts: 24
    Hi Fairywishes, I hope I didn't sound as though as I had all the answers in my last post! I also hope things are getting better for you, and that you are having some success with CAMHS. With regard to the negative attention thing - I once went to a talk by someone with autism who described how he got such a lot of pleasure from the sight of an angry face, that he had to work hard to resist doing things to deliberately provoke that reaction in others!
  • fairywishesfairywishes Member Posts: 25
    Thanks Teresa - I didn't see this post. I haven't got anywhere with the CAMHS and school are still fighting. My boyfriend has moved in recently and although not always easy I think I control myself a little better if she isn't because I know I have someone to go downstairs too when it's over.
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