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Meltdown advise needed please

hjstewyhjstewy Member Posts: 2 Listener
Hello Will,

My 5 year old daughter is diagnosed asd, development delay and hyermobile joints. She has learning disabilities which we are currently in the process of trying to quantify with a Learning Disability nurse. She attends mainstream school (year 1) with 1 to 1 support for all but 1.5 hours each day. She is verbal but her communication is limited to verbalising requests to satisfy immediate needs (e.g. want strawberries, poo'd, or outside). She has recently started using some words joined together and is generally happy most of the time. She is doubly incontinent and used pads. She gets constipated regularly, so is now on 2 movicol a day permanently (which helps). She gets very upset when told 'no' or asked to stop doing something (words other than 'no' but meaning the same thing have the same effect on her). She gets cross at school, showing her anxiety by shouting, or knocking things off tables etc. However, as soon as she gets out of school her anxiety levels often lead to full meltdowns (like she's been containing it all day and can suddenly let go once out of school). Often we don't even make it home before it starts, it can be in the playground or on the way home. We use a wheelchair to keep her safe, but she can walk to short distance to the car, so I usually don't have the wheelchair with me at thees times. She becomes distressed, often lies down (doesn't matter if it's wet, if there is dog muck in the way, mud or whatever). She bangs her head on the floor (again, doesn't matter if it's concrete, grass or whatever). She shouts, cries and refuses to move. At home, meltdowns are even worse. She head bangs, but also bites herself, hits/slaps herself and us (mum, dad and her 2 sisters) and throws or hits us with objects. My husband and middle daughter have had cuts to their faces and I'm always covered in bruises. She does eventually calm, and then we can cuddle it out. We've tried weighted clothing as she like tight clothes and being held tight but she doesn't like them. I worry enormously for the future as when she gets bigger she could seriously hurt herself or someone else, and it's just awful watching her bang her head off the walls because that's a better option for her than dealing with the anxiety she feels. How can I help her?
Sorry it's a long post, I've tried to include as much detail as I can x

Replies

  • [Deleted User][Deleted User] Posts: 689 Listener
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  • will22will22 Member Posts: 31
    Hi hjstewy,

    Thanks you for such a detailed comment. I'm working through a response now and will get back to you as soon as is possible. Hang on in there. 
  • will22will22 Member Posts: 31

    Hi hjstewy, 

    Don’t be sorry for the detail, that’s a fantastic summary.

    You are absolutely right to be seeking support now. As you say, managing a 5 year old having an outburst is one thing but as time goes on it becomes harder and harder to physically contain someone and it is very easy to fall into patterns of just getting by which will eventually fail. Get involved with services now, don’t give up and get professional assessment to ensure that whatever is going on for your daughter is addressed, and hopefully these issues can be reduced as she grows older.

    Your present situation – The scenario of holding it together at school and unloading it all at home is quite common. The key here is understanding why someone can be relatively settled in one context and so agitated in another. 

    There is always a qualitative difference in relationship between immediate family and staff/caregivers, and the expression of emotion to Mum’s in particular can be very intense. From what you’re saying she appears to be under stress for the whole day but manages for whatever reason to hold it in until she’s with you and then she either feels like she can let it out, or it becomes too much to keep in or some support structure is different and this means that agitation becomes uncontrolled.  Managing these outbursts has to be a multi element approach. Just answering ‘what do I do when she’s angry’ will only take you so far.

    Reducing stress;

    Commonly in ASD there is a high level of stress and resultant agitation in unstructured environments. School have it easier here as there is concrete certainty in the routine of the day. Do they make use of any visual supports to help your daughter navigate her way through the day for example? One of the first things I would look at would be providing consistent routine and supporting this visually through the use of a timetable or chart or suchlike. This is much harder to do at home than it is at school, but remember that a key deficit in ASD is inflexible thinking. Your daughter is likely to struggle with scenarios that are unpredictable or she is unsure what is going to be happening as she struggles to apply her knowledge of old situations to new ones. Do this work for her and lay out what is going to be happening, when and with who as much as is possible. Even the routine of getting to the car and going home. Can school make use of a visual support to explain to her that this is happening? It’s possible that this transition alone is causing her enough stress to tip her over into an outburst.

    Managing incidents;

    What is clear here is that whatever is driving these incidents is very powerful. She is reaching such a build-up of emotion, stress and agitation that she is harming those around her and hurting herself. At these times she is likely to be behaving irrationally and reflexively. In scenario’s like this I would avoid any attempt to try and ‘teach’ or talk about what is happening during an incident and focus entirely on supporting her to come down and relax. Minimise your language, try your best to control your own stress and support your daughter to outlet her emotion in the safest way possible.

    Our strong impulse is ‘to intervene’, but when someone has reached a meltdown level we need to try and keep a cool head (which as a parent is next to impossible) and focus on keeping the person and ourselves safe. This can unfortunately mean allowing someone to self-injure as safely as possible. Can you identify a space where she can hit her head more safely? Can you block the space between a wall and her head with a thin pillow (I say thin, as blocking the sensation entirely may just lead her to move to a new space. I worked with a young man who punched himself in the forehead. I tried to block this with some padding and he just moved his hand and punched himself in the mouth instead). If she likes pressure then try and squeeze her, give her some pressure on her head (she may enjoy pressure when she’s calm, but when she’s highly agitated she may not engage with this. Weighted blankets can be really useful for helping someone maintain their wellbeing and regulate their sensory need, but they are not always advisable when someone is stressed. Sensory need fluctuates, it is not static.)

    Is it possible to support her to outlet her agitation on an object? Bash the furniture etc.?

    To be clear -  I am not telling you to allow herself to self-harm if she is causing herself injury, only looking to find a way that she can outlet her emotions or achieve a sensation she is looking for in as safe a manner as possible. If she is causing herself harm, try and prevent his wherever possible.

    Some useful links in managing meltdowns –

    https://www.ambitiousaboutautism.org.uk/understanding-autism/behaviour/meltdowns

    http://www.autism.org.uk/about/behaviour/meltdowns.aspx 

    Longer term

    What you have here is a young person who likely experiences a great deal of stress in her daily life, has a limited means of understanding and then expressing this and as such shows several behaviours which can come under the heading ‘meltdown’.

    In the first instance you need to identify and eliminate as much of this stress as possible. You cannot eliminate stress entirely, but you can begin to put structures in place to support her to understand what is happening and bring some routine and predictability to the day.

    There may be some element of sensory regulation here- the ability to stay physically calm. Possibly building in some regular physical activity to let her blow off steam and/or experience comforting pressure to help her stay calm may be beneficial.

    Do you have input from a speech and language therapist? These behaviours may reduce as her ability to communicate and report her feelings increases. This is not easy task for someone with LD and ASD, but on a lifelong trajectory these should be areas of particular focus.

    As ever my frustration is not being able to give you specific answers, only an outline guide. What I would be doing here is working with school to look at the support systems they have to see what you can draw into your home life. I’d be looking to minimize any anxiety caused by ambiguity or lack of understanding through use of visual resources at whatever level is appropriate.

    Try and provide a safe space to let her anger out and work out a plan among your family as to what you do when she gets to this point. I have worked with parents who agreed that as they couldn’t calm their child down they would simply leave the room and maintain their own wellbeing until the emotions had run their course.

    And long term – what skills can she learnt to help her manage the emotions and express her needs and wishes. This is long term work, but vital to her long term wellbeing.

    I hope that’s of some help. If not then please say and I will try and provide you with some better guidance. You should have support from local agencies to give you a clear picture of why these behaviours are happening and what you and school should be doing. 


    Will

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