Managing Meltdowns?

[mumtoadozen]

Hi there!

 

My son was dx as high functioning autism last Tuesday, we are awaiting an ADOS apt to determine where he falls, he's 4.

 

We walked out of the apt with nothing more than 'this is what I think' and appointments will be made with OT and Physio but no advice on what we are dealing with or how we deal with it.

 

The problem that I find difficult is my son having complete meltdowns over trivial things. He is a pretty bright child and I know a LOT of these meltdowns are fuelled by his frustrations and result in him gouging his eyes, pulling his ears, digging his nails in his skin and head butting anything that will cause him pain, but I don't know how to protect him because when I try to intervene he then lashes out at me,

 

He is very good at verbalising in general and has been advanced with his speech from a very early age but when he's in meltdown he only screams and becomes illegible. He also has no concept of jokes/sarcasm so when granddad played the "I got your nose" he literally attacked him for removing his nose from his face, something that my others found amusing at a much younger age.

 

Thing is, how best do we avoid/manage meltdowns? I'm afraid he will seriously hurt himself or someone else as he is highly explosive.

 

I just want the best for my lil man and feel so out of my depth and useless so any advice would be very much appreciated. Thank you

 

 

[luch]

Hi I didn't want to read and leave. I have just recently joined. I have a 12 year old who meltdowns and I know how hard it as from my point of view.

My DS looses it and any way of coping is his "fight or flight" response.

 

I also do remember when he was younger similar age of your child it seemed relentless and there seemed nothing I could do.

 

Over time I learnt to give him his space, validate his feelings and console him when he needed it, massage him when OT suggested. I learnt over time some triggers provided sensory toys and encouraged him to retreat to his room when needed.

Has anyone suggested social stories or visual aids for the literalness of "I got you nose", is SALT doing any work regarding literalness?

I don't know if you are on facebook but I have also found this site very useful Autism Discussion Page it has slides discussing various aspects. x

[mumtoadozen]

Hi Luch

 

To be honest we seem to have been thrown in at the deep end with a dx but no definition of procedure (if there is such a thing) just a 'wait for apt with OT, physio and for ADOS'

 

The biggest brick wall we have faced is from the HV, she just turned up at his appointment with no warning or invitation for a start and she's quite an intimidation for me. So covering his literalness was not brought up along with a few other relevant things as I could feel her burning me with every answer and example I brought up as if she didn't know, which in fairness she didn't because I've dealt with a nursery nurse since he was born as she takes over most of the workload. The problem is because I suffer from severe anxiety and depression and we lost our 11th child to a stillbirth at 40+4 she has put my son's issues down to that and wrote an awful referral, thank god his keyworker had witnessed more of his behaviour/quirks/meltdowns to realise there was an underlying cause (plus she has a son with very similar traits that is officially diagnosed)

 

I have no clue about SALT but will look into that along with everything else you have suggested.

 

Thank you ever so much for your insight

[luch]

No worries we have only officially just got the diagnosis most recently and having the ados revealed everything we stated were indeed issues (but suspected/known for years).

SALT have worked loads with him over the years and I know they do loads of work booklets, courses for parents to attend. I also know there are autism parent courses called early bird for a young diagnosis and cygnet older children if it still runs we might go on.

Literealness has been an issue in our household for years and still is x

It does help when others see it, I've had depression on and off for years and made to feel it was me just seeing it. But when everyone in the family sees it and he has run out of school and had some issues there then it isn't the case. Its about supporting your child and the family as a whole Take Care ;-) xo

[bed32]

That is a question that needs to be answered on several different levels.

 

Immediately the question is how to manage a meltdown once it is happening - can be difficult to do - we find sometimes a firm hug helps, or distracting him - especially with jokes, and getting him into a quiet environment. Restraint of any form is usually a bad idea.

 

At the next level you have to be able notice the signs of an impending meltdown - there are likely to be indicators in his behaviour that he is under stress and a meltdown is likely - he may engage in various self-calming activities such as fidgeting or you may detect the stress in his voice (not sure about a child as young as 4 though).

 

More fundamentally. meltdowns are a sign that he has needs that are not being met. Concentrating on "managing the meltdowns" is missing the point. Over time you need to come to understand what his needs are and how best to meet them. So look into the SALT side, look at OT - and particularly the sensory side. Understand what causes him stress and what you can do to eliminate that. Common ideas are making sure you have a routine and prepare him for changes to that routine. Give him visual schedules for difficult parts of the day. Make sure he has somewhere where he can escape to when things get to much for him, and so on.

 

The good news is that things should get better, Get the right environment and meltdowns and other behavioural problems should be drastically reduced.

 

Don't ever let anyone tell you he has a behavioural problem, he doesn't, and don't trust people who concentrate on managing the behaviour rather than addressing the underlying issues.

[Sally44]

Hi, this is a link to an archieved government document called the Autism Exemplar, part of the National Framework. Although the process can vary from area to area, this document will help you get an overview of the process - which is something no-one ever tells you. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

What I would also recommend is to keep a daily diary of things he says or does. That is always very helpful in building up a picture. Also, just put your foot down [with professionals, not your child]. If a professional starts blaming it on something ie. lack of parental control or some kind of bonding issue, and you let them get away with it, you will find that other professionals may fall in line with their way of thinking and then you've really got an uphill battle.

 

I was labelled, by my local authority, as a pushy mum. It tooks a long battle to shake off that label, win an educational tribunal etc. But my son was put through hell because everyone kept saying they had no concerns. Even to the point of him attempting suicide. And that was all via educational professionals. I found Clinical Psychology and CAHMS were very good with identifying my sons needs.

 

We also ended up getting independent assessments and reports, which you might consider, but much later in the process if you feel you are hitting a brick wall, especially regarding education and support/therapy.

 

Regarding meltdowns, that is part of having an ASD. It is a different way the brain is wired up neurologically. Maybe the best thing you can do is to explain to him, when old enough, and in a way he can understand. That his brain is wired up differently and that what he experiences is different to you, his siblings etc. Because if he is self aware he will see himself that he is different, and cannot cope with things that other kids can, and cannot do things that other kids can, and he will label himself as rubbish, a loser, a freak [words my son used about himself].

 

What my son has told me is that it is like his brain is on fire [when something upsets him]. He cannot stop it, or control it. At those times he usually says and does things he later regrets, and later punishes himself for. We have found the best thing is not to try to talk to him when in meltdown. Have a safe quiet place - usually bedroom. But the focus is on going to his bedroom to calm down, not as a punishment. Any attempt to talk to him or touch him would get a physical/verbal attack. And we say something like "I can see that you are very upset. You need to go to your bedroom to calm down." And then we leave him to calm down. And then talk to him about it afterwards.

 

I've also been to seminars and heard a meltdown explained as like a shower curtain that does not contain the water. When the brain has been scanned during these meltdowns there are differences. In NT brains the activity is usually located in a small area. In ASD it can be lighting up much larger areas of the brain. So the description of a shower curtain not containing the water [ie. emotions], is probably quite a good one. It isn't something they can control. Also the front part of the brain is about emotions and control of emotions. Again there can be differences in this area which may show themselves as impulsivity, mood swings from laughing to meltdown in seconds, dangerous behaviour to themselves such as lack of fear of heights, falling etc, not having a typical response to events, or becoming extremely upset by relatively small events. So there is a real difference, and not something he is making up, or some kind of lack of parental control.

 

What triggers meltdowns. It can be many things. Autism is often about not being able to see the cause or effect or overcome it. So, as an example, some years ago we went to have lunch at a supermarket cafe. My son wanted chicken nuggets. We were told they were no longer called that, they were now called "chicken chunks". My son could not get that, what that name change would mean. He could not believe it would be the same thing with a different name, so he asked for "fish fingers" instead. And we were told that they were now called "Fish nuggets". At that point he fell to the floor kicking and screaming, whilst i'm in the queue with a whole load of people behind me. I ordered the food, managed to get him to a table. He eventually calmed down. Tried the food when it arrived, and admitted that it was 'the same' with a different name.

 

But any change can cause that reaction. For your child it will be whatever triggers his anxiety. But one of the things we noticed from very early on, toddler age, was that our son got very upset, for no apparent reason. And the level of upset was totally out of proportion to anything we could identify - if we could identify anything. That it lasted a long time. That he could not self soothe and that he self harmed such as banging his head on the floor, vomitting, hitting his face, scratching his face, biting his arm etc.

 

I also agree that things to get better - from understanding and identifying the issues - as they get older. My son used to vomit alot. So if I turned off the TV he would vomit, or if I put a toy away he would vomit, or if we left the house he would vomit. He also has alot of sensory issues and was diagnosed with a Sensory processing Disorder some years ago. That might be something worth looking into because how we process incoming sensory experiences is how we experience our world. So if noises, sights, smells, tastes overwhelm him or cause upset you will have problems. It can affect any of the senses, including balance, coordination etc. My son still cannot ride a bike and took years to learn to tie his shoelaces. He has problems with new shoes, socks, washing/combing/cutting hair or toenails. Tags in clothes have to be removed. Certain smells can make him ill. He often needs total quiet. He covers his ears and runs out the room when I turn the hoover on. Yet he often appears deaf, when he isn't.

 

Hope some of that makes sense.

Edited August 6, 2013 by Sally44

[Sally44]

Something else i've remembered from back then, is that when we were leaving the house my son used to have his 'survival kit'.

 

This included a baseball cap to shade his face from the sun and other peoples glances. Sunglasses if he wanted them. Ear defenders from the DIY shop to cut out alot of noise. Something like a small toy he could hold. If he likes music he could listen via an Ipod, or play on his Nintendo. He stayed in a pushchair for alot longer for when we went out because he would get extremely tired and if upset would refuse to walk. We also tried a hanky with a favourite smell on it. We would be quite specific about where we were going and in what order [you can do a picture board]. My son still needs this specific information. So when we go out he wants to know where we are going and in what order. If I am going to the supermarket he wants to know how many things I am going to get and he will get anxious if I start buying things randomly because they are on offer! But now he is older I will tell him what I am going to get, and will add that if I see something else I need that I will buy it. Alot of that is about him trying to work out how long he has to bear being in the supermarket.

[lindy2017]

Something else i've remembered from back then, is that when we were leaving the house my son used to have his 'survival kit'.

 

This included a baseball cap to shade his face from the sun and other peoples glances. Sunglasses if he wanted them. Ear defenders from the DIY shop to cut out alot of noise. Something like a small toy he could hold. If he likes music he could listen via an Ipod, or play on his Nintendo. He stayed in a pushchair for alot longer for when we went out because he would get extremely tired and if upset would refuse to walk. We also tried a hanky with a favourite smell on it. We would be quite specific about where we were going and in what order [you can do a picture board]. My son still needs this specific information. So when we go out he wants to know where we are going and in what order. If I am going to the supermarket he wants to know how many things I am going to get and he will get anxious if I start buying things randomly because they are on offer! But now he is older I will tell him what I am going to get, and will add that if I see something else I need that I will buy it. Alot of that is about him trying to work out how long he has to bear being in the supermarket.

 

Something else i've remembered from back then, is that when we were leaving the house my son used to have his 'survival kit'.

 

This included a baseball cap to shade his face from the sun and other peoples glances. Sunglasses if he wanted them. Ear defenders from the DIY shop to cut out alot of noise. Something like a small toy he could hold. If he likes music he could listen via an Ipod, or play on his Nintendo. He stayed in a pushchair for alot longer for when we went out because he would get extremely tired and if upset would refuse to walk. We also tried a hanky with a favourite smell on it. We would be quite specific about where we were going and in what order [you can do a picture board]. My son still needs this specific information. So when we go out he wants to know where we are going and in what order. If I am going to the supermarket he wants to know how many things I am going to get and he will get anxious if I start buying things randomly because they are on offer! But now he is older I will tell him what I am going to get, and will add that if I see something else I need that I will buy it. Alot of that is about him trying to work out how long he has to bear being in the supermarket.

My son now 14 is exactly the same especially how many things i was going to buy ....now he doesnt come with me hardly ever...

[mumtoadozen]

Thank you all for your advice, I very much appreciate it

[Sally44]

 

My son now 14 is exactly the same especially how many things i was going to buy ....now he doesnt come with me hardly ever...

 

I think it is alot to do with anxiety, and sensory processing, and obviously the ASD and not being able to cope with change etc.

 

His school and us have both worked on things being 'different' or 'changes'. Sometimes his daily timetable will include a 'change' or 'surprise'. It has helped him to cope a bit better.

 

Can you talk to your son about what it is that upsets him so. Does he have a good understanding of time? My son doesn't and so that can cause him alot of anxiety if he has thought he had some understanding of how long something was going to take, and then it takes much longer because I do more, or go to more shops. And sometimes I turn it around for things he wants to do and ask him the same questions he asks me and tell him that I am doing what he does with me - in the hope that he will get some understanding. Because he does like to spend time in places like Toys R Us or other shops in town, or shops that sell DVDs and XBox games and he can take a long time to choose what he wants.

[Shnoing]

... What triggers meltdowns. ...

Contradictory information.

Information overload.

Being unable to decide between two options.

 

Afaik, the shutdown (no more new information received) starts way before any action is taken.

[Sally44]

Yes definately all the above cause him huge problems. Being unable to choose is a major issue for him. I presume this also ties in with difficulties with theory of mind, predicting outcomes etc. It is very hard to choose when you may not have a very good insight into what your choices might actually result in you getting, and also not getting.