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disabled son has problems with aggression

Hi Will,

my 25 year old son has cerebral palsy, is wheelchair bound, and has speech and language difficulties, also has a mild to moderate learning disability and has good use of one hand. He uses an electric wheelchair and communicates using a combination of speech, adapted sign language and a Tobii Dynavox speech output device.  He has problems eating and has dietry supplements and is monitored by a dietitian.  His behavior is becoming  difficult to manage. He is physically strong with his able arm and he grabs and pulls clothing and hair, hits and bites when he is not happy or has to do something he doesn't want to do.  He also hits himself repeatedly on the head and yells and bangs on anything he can reach.   We have a learning disability nurse and she focuses on avoiding triggers, or suggesting he may be feeling unwell...but it is every day and he tells me if there is anything wrong.  I feel someone should be working with him to reduce the aggressively  outbursts..it really is up setting to see him hurting himself and others.  Other than this he is a  happy lad and does lots of activities.  It seems as if he controls his behavior everywhere but home or when out with family or carers he has known for a long time.   Any suggestions would be greatly appreciated.



  • will22will22 Posts: 31Member
    Hi Abi222,

    This scenario is quite familiar to me from the client group I work with. Your son has a range of restrictions on him in terms of his communication mobility etc. and while it sounds like his communication with you is good, communication alone does not always solve problems. As you say he shows these behaviors when he is not happy or doesn't want to do something. if this is the case then his unhappiness will overrule his 'normal' communication skills and he'll move straight to a from of communication that gets the job done - hitting, biting etc. 
    What makes challenging behavior so difficult to reduce is that it usually works very well and very efficiently. A common example i come across is a young person with similar needs not wanting to participate ion a session/lesson. If they were to ask not to go this won't always prove effective. But if they bite their support staff it will work every time. 

    What this means is that there is no magic answer to your problem. If Your son does not want to do something and is adamant about it then your options may be limited. the LD nurse is correct - look for triggers and avoid them, but I'd imagine that these instances happen so frequently that they are next to impossible to avoid. 

    First up you need to document every instance that occurs to look for patterns and similarities. What kind of things does he not want to do, what makes him unhappy? you know your son better than anyone but be sure that you're not missing something. There may be some hidden feature of the things that he doesn't like that change your understanding of what upsets him. For example is this all about not wanting to go out, or not wanting to have people in his personal space etc. 

    With that information you can hopefully make some practical changes to reduce the risk of incidents. Don't get sucked into having a battle of wills because 'he need to learn that he can't have his own way' etc. This just causes stress for everyone. 

    After you have a good list of things which might cause an incident, look at the things on that list and try and eliminate the possibility of uncertainty. ie. does your son fully understand what is happening in these situations? Maybe some of them cause him anxiety and this can be reduced by better explanation of what is happening?

    Following this we need to introduce a new behavior to counteract the effectiveness of the old behaviors. Hitting people works very well to get their attention, get them to move or communicate unhappiness. IF this behavior is you son communicating that he doesn't want to do something or is unhappy (and i'm going on what you say - I have no idea) then he needs a reliable effective way of communicating this that does not involve violence. From what you say he has a lot of good communication skills, but it's important to remember that when stressed our ability to think clearly and communicate disintegrates.

    What I would do is work with your son to pick out a quick means of communicating that he's not happy. One simple word, gesture vocalization- whatever works. This is the tool he can stop any activity with. And within reason you abide by this. No means No. 

    What this should do in the short term is give him an equally effective means of stopping what is going on without hurting you or himself. 

    But you can't avoid tings forever. Assuming that there's nothing going on such as a sensory difficulty that makes some situations impossible for him, look at a means of rewarding him for participating in activities that he doesn't necessarily want o. Back to basics with a good old fashioned reward chart. 

    IN my experience, giving someone the ability to exit a situation at any point makes it easier to tolerate. I know that I can leave whenever I want - this can help reduce anxiety.

    This all sounds very straightforward and easy on paper. It is not and i'm not pretending it is. This is a real person with real needs who is going to be unhappy at points and not want to do the things they don't want to do. My advice here is very broad as that's all i can offer in this format, but do not mistake that for me trying to peddle you an easy answer.

    What i would ask is how much help and respite you're getting, how much support you are having to manage the stress and difficulty of this. It's ok to acknowledge that your son (as much as you love him) is hard work sometimes and you need a a break. I struggle to get my 3 year old daughter to do anything some days and the stress of that drives me up the wall. I can only imagine how much stress this puts you under.

    I hope that's a little helpful. please get back in touch.


  • Abi222Abi222 Posts: 14Member Listener
    Hi Will,
    thank you for tour reply,      It does make absolute sense that my son uses exactly what he knows will work.  My daughter actually said he hits himself because we can quite often predict an attack and move to avoid being caught and he knows i worry about  him hurting himself. 

    You also guessed the triggers can`t always be avoided as they include eating and drinking, personal care, medication, appointments, making him aware of danger/hazards and things which happen around him when out and about.  He also is very stubborn!  He can refuse to leave the house for appointments which i understand and try to reassure him but he wont listen at all he will just loose his temper.  
    However he can also  refuse to come out of the house for his day center or get into/out of the car to get to the center  which he loves and is actually fantastic.  He can also refuse to leave the day center to come home! 
    Hi can be so much fun and loving giving lots of hugs and sequel with delight when having fun but this can change in a split second and he can be quite moody and unhelpful.  
    He has a care package and i have carers who help but depending on how difficult he makes his personal care calls the care time runs out and i have to finish off alone which is quite hard.  He also gets annoyed if they do leave.   During the calls he will refuse to be hoisted, hold on to carers hands, hold towels, bite, towels, hold on to his clothing dressing and undressing and put his hand behind his head.  ..the list goes on.  He also playfully hits which really hurts.   If we have a new carer he is lovely until they have been with us for a while.  
    i realised a long time ago confrontation makes everything  worse! and try distraction, bribery and walking away which can work depending on severity of of behavior.  One carer told me he was spoiled!  However he obviously has to have his basic needs met for health and well being.

    I do have consequences for very bad out bursts and he is always quite sorry afterwards and accepts the loss of an activity or  device.   But knowing he will loose activities will not stop bad out bursts.

    I have tried rewards earning stickers to get treats for doing things he might not want or for kind/good behavior he is happy to get them but not bothered if he didn't earn one.

    We have chats about his behavior and agreed to say a quiet no or do the stop sign as people will listen to him,  but he cannot do this when he doesn't want to do something or is anxious,  Its like a split second red mist descends.  He can sweetly say no and sign when we practice but not when he should use it.

    I am grateful we have a good care package, respite and for the happy episodes and the fantastic day center we found, (he refused to go to the L,A. one and cried a lot). these all reduce the stress for us and for him too.

    So in a nut shell i doubt we can be helped to stop the violent outbursts.

    Any help is always gratefully received.

  • will22will22 Posts: 31Member
    Hi Abi222,

    first up 'He's spoiled' That makes me so mad! I've heard that so often from various people over the years 'He thinks he can get his own way because he gets what he wants at home' It makes my blood boil. To be completely clear;

    1. The behavior you're seeing is not because of being spoiled. 
    2. Supporting someone with complex needs means letting them get their own way at times because other options can be very difficult 24/7 for someone with learning difficulties and complex needs. 
    3. He's your son. Spoil him rotten if you want to. 

    Sorry - rant over. 

    The key here is as you've identified - the red mist. In the mainstream population we have skills hardwired into us that allow us to manage and regulate our emotions. The question 'Why does he hit'?' is not answered by 'Because he gets angry/doesn't get his own way'. I get angry and never get my own way but I rarely hit anyone. The answer really is 'When he get's angry, he lacks the skill to understand and manage this and so his emotions come out in a sudden rush which leads to hitting'. Cerebral palsy is damage to the brain that affects movement/coordination. But this damage is not confined to those areas. Other areas that support the inhibition of emotion for example may also be affected. 

    What this means is that these skill shave to be explicitly taught. It is possible to teach someone how to calm down but a great deal depends of the extent of the difficulty that the person has with these skills. How you go about this is not something I can guide you with here I'm sorry. He will need an individual assessment to see what skills he has and what can be built on. Discuss this with your LD nurse.

    I would also come back to the idea that your son is possibly struggling to understand what is going on. The examples that you give, not wanting to go and then not wanting to leave, suggest to me that he may have difficulty managing transitions or understanding the sequence of events. Even if it seems like he understands and you talk him through things, is it possible to you some form of visual supports like a timetable to let him know what will be happening throughout the day?

  • Abi222Abi222 Posts: 14Member Listener
    Hi Will,
    Thank you for the "rant" it really made me feel better!
    I did mention wanting someone to work with my son to help him manage the out bursts to L D nurse but as he is able to control this when not at home/with family/care worker of 10 years, or out with us.  The focus is to avoid triggers which appear to be us and what he doesn't want or like!

    He does understand why we leave home for day service and we try to keep to his routine but i do think it may be because something may have happened that changed what he thought would happen and didn't like it much. We do try to avoid disruption, but it does happen, illness, vehicle malfunction, the weather so his day can change and i think he remembers it for a long time if he felt upset or anxious..he has a memory like an elephants !  However if the change was to be better than the planned things he would happily accept it!   
    Whatever upsets him he will not show it at the time if not with us but seems to keep a lid on his feelings until he sees us, which must be really hard to do.

    I understand he would need an individual assessment, i have even asked our
    G P but it was referred back to L D N and we have got no where.  When she sees him he is calm and looks perfectly happy, the same with other processionals he rarely refuses to comply he seems to want to please them all, just not us!  Its very frustrating, 

    It has been suggested by an earlier LD nurse that it is "learnt behavior" so again my fault!  She stopped coming as she said she couldn't help any further as we were following her suggestions and were aware of what we should do....rewards, avoiding triggers.  This is our 4th one so far who became involved after i needed treatment after an out burst as i was injured.

    Thanks for your suggestions.  I think I shall ask my family if they would help me fund a private someone? would it be a psychologist?
    He definitely needs assessed and at least an attempt to teach him coping skills.

    Thank you

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