Behaviours that challenge others do not happen in a vacuum. To identify the triggers (events) that contribute to the occurrence of the behaviour a common method that is used is called a Functional Behaviour Analysis (FBA).
The FBA involves systematically reflecting on an incident by analysing the Antecedent-Behaviour-Consequence. Antecedents refers to what preceded the behaviour. Behaviour refers to a description of the behaviour that followed the antecedent. Consequence refers to what happened immediately after the behaviour. By completing a FBA the reasons, purpose or function of the behaviour can be understood.
Below Tony shares his experiences and personal insights to help us understand the importance of looking beyond antecendents.
I am a Person Of Disability in my late sixties. A year ago, in August 2020, I had a major stroke that put me in hospital for several weeks. The stroke left me with a left hemiplegia, paralysed completely down the left-hand side of my body and very weak core muscle strength. It also meant that I was doubly incontinent and was fitted with a catheter. Full-time catheterisation meant that I was prone to bladder infections (which are not pleasant). The stroke also badly affected my speech and talking became something of an effort. Indeed, if I am emotional, or in pain, or my throat is dry, or I am not feeling well, or for reasons unknown, I cannot speak at all and have to resort to using other forms of communication; Makaton sign language or my Voice pen (Pen that speaks when positioned over a symbol it recognises) and symbol board. As if not all that was enough, I found myself having to cope with lengthy periods of pain and poor post-hospital provision.
Being a POD (Person of Disability) can be very frustrating; things that I could easily manage before the stroke are incredibly difficult (if not impossible) now and I find myself exhibiting behaviour that I would have classified as challenging in my previous role as a teacher within special education. Behaviour that Others might find Challenging (BOC) is the theme of this text. As a teacher I witnessed it on many occasions throughout my, over forty, years in classrooms across the world (either working as a teacher, observing lessons, or advising on good practice in special education) and now, here, as a man with an acquired disability, ironically, in another role, finding myself exhibiting BOC! Thinking about it, there was never a single explanatory cause for my BOC, analysing my actions retrospectively, there were several contributory factors and just one triggering event. Prior to my stroke, when working in special education, I would often perform an ABC analysis (Antecedent, Behaviour, Consequences) on events that I witnessed in the classroom. However, now that I am a POD myself, I realise that, when considering antecedents to the BOC (what happened leading to the BOC), I was only searching for a possible initiating trigger but not really giving wider attention to long-term aetiological factors that may have played a significant contributory role. In other words, the setting events or circumstances beyond the immediate context that affect the likelihood of the challenging behaviour occurring. For example, illness, lack of sleep, or a stressful experiences earlier on in the day.
I am not just a POD, I am a specific category of POD; an IRON POD (Individual Reliant on Others for all Needs). Without the assistance of others I can do very little for myself. I would not be able to get out of bed without help.Only having one arm and hand (and those not working at 100% efficency) is somewhat handicapping. I struggle to do the things to which I didn’t give a moments thought prior to the stroke. Try going through a single day without using your left arm or hand for any purpose at all. Let your left arm hang uselessly by your side throughout the day. If you move it all, you’ve failed the situation. You will soon begin to understand what a blessing two functioning hands are to you. Try taking the top off a bottle of tomato sauce using just one hand. Not easy, is it? If the cap is on tightly, it is virtually impossible.
As an IRON POD, life can be fairly (unfairly?) frustrating and it is easy to find yourself getting angry at inanimate objects simply because they are not behaving as you would like! If the television remote falls to the ground from my one working hand because my fingers are not fully functional, I cannot bend and just pick it up. I have to call for assistance, somebody has to come and help me or else I will not be able to turn up the volume on the program that I have been wanting to watch. It is easy to get annoyed and such an experience can alter my mood for quite some time afterwards. In itself, it would not be enough to cause BOC but, these setting events coupled with a triggering event, together it might be sufficient to bring about some untypical behaviour on my part.
I pay for care provision three times a day. A two-person team arrives to assist me with whatever I require doing at the time that they arrive (breakfast, lunch, and an evening call). My natural speaking voice has been seriously affected by the stroke and I frequently struggle to speak. At such times I usually resort to Makaton sign language. Makaton signing requires the use of two hands and, so, I have had to be creative and adapt it for use with a single hand. Both the nurses (whilst I was in hospital) and my care teams (my care is not provided by one pair of people, almost anyone can turn up,.I see many faces during an average week) did not have any knowledge of sign language and would stare at this crazy man, moving his right hand around, befuddled! They might ask me a question and, before I had the chance to respond, have asked a whole string of following questions while I was still trying to answer the first! They would then assume that my hand’s movement was the response to the last question asked and ascribe a meaning to it based on the (wrong) question and some subjective contextual aspects. It was obvious that they would be wrong and I would become even more frustrated! I’m trying my best to communicate an answer (‘I don’t know‘) to their initial question and, because the sign for ‘I’ involves me pointing to my chest, the Carers think that I am telling them about a pain, start to ask me a whole new series of questions about heart attacks! All because I was signing and pointing to myself in response to a question asked of me many previous questions before. I might have been angry had I not found the whole situation to be quite humorous. The use of humour can be an effective method of diffusing a potential BOC situation providing the individual concerned is capable of understanding the joke. Communication breakdown is a possible trigger for BOC. The breakdown can be because others don’t comprehend my communication efforts or because I have not understood what is being asked of me. While, in my case, the latter is unlikely, there is a distinct possibility that, what is being asked, is beyond my present capabilities with more than half of my body not functional. Normally, I would explain what they were asking/expecting was beyond my capabilities but communication from me is likely to be unsuccessful and the situation can quickly go from bad to worse.
I have a hospital style over bed table without which I couldn’t manage. It has to be precisely positioned because everything I need has to be within the radial movement of my right hand and arm. I have very weak core muscle strength. As such, I find it very difficult to reach across my body to retrieve something that has been placed on my left. Carers assume, because an object is placed near to me, that I can twist my trunk round to the left and, using my good right hand, take the object when I require its use. They could do it easily while sitting in bed so the same must apply to me, mustn’t it? They are wrong to think in this way. It is not only my arm and leg that the stroke took from me, many other functions were affected also. Necessary items have to be placed in what I call my ‘proximal zone of accessibility’. If items are only two cms outside this zone they might as well be on Neptune because they would be agonisingly just out of reach. I would then require the assistance of an Other. My mantra became the ‘goal is control’. Not Others controlling me but me in control of others, my environment and, my life. I found that Others much prefer to be in control of me and will perform acts without informing or involving me without seeking my express permission. Early in my first period in hospital following the stroke, I had to call a nurse to look at my catheter bag, which was full. The nurse said,
and hurried to get a disposable bottle in which to empty it. I then asked the nurse for the bed control. She gave me a quizzical look and asked,
“What do you want that for?”
I explained that I wanted to raise the top of the bed. She asked,
“Do you want to sit up?”
and using the bed control herself proceeded to raise the top of the bed saying,
“Tell me when.”
“No, give the control to me.”
My speech was very poor, affected by the stroke, and the nurse just carried on in control saying,
and began lowering the top of the bed! I repeated, as clearly as I was able,
“No, give it to me.”
This time the nurse appeared to understand me and passed me the control stating,
“Fine, do it yourself.”
She was not pleased as she walked away. Carers like to be in control. It is not the Carer that needs to be in control, it is the POD. An example will illustrate this concept further. I had been saving some dental chewing gum on a little piece of tin foil on my bed table. I had a piece of gum every day and I had saved it over a week. It may not have been too hygienic but it was my choice. One morning, a Carer spotted the gum on my table and, without asking me, picked it up and threw it in the rubbish bag! I was angry that she had taken away my control. Another time, while in hospital, I was in a bed with a faulty bed control. It was night and the lights were out. I was very uncomfortable but could do nothing to help myself except to try to use the bed control to reposition my body a little. In the poor light, I hit the ‘raise bed’ function thinking that I was raising the top of the bed just to sit up. When I realised that I had raised the whole bed by mistake. I tried to lower it but that particular function was faulty and not working on my control, so the bed remained raised in its highest position. A while later, a night duty nurse, on seeing my elevated position, came up to me and started to scold me like a little child. I tried to explain but my speech was bad following the stroke and I struggled to speak. The nurse made no effort to listen and comprehend my poor communication and continued to berate me. He used the separate bed control at the foot of the bed to lower the bed. He told me that I should go to sleep and stop messing with the bed control as it was not safe to be 'way up in the air'.
He then took my bed control and positioned it behind me such that I could not reach it and had to spend the remaining part of the night without any control over my position whatsoever. He said that he would be in trouble if I were to fall out of bed so high up (where was the concern for me?). Fall out? I could not even roll over on my own let alone fall out of bed. The side railings were in use and in the up position! How could I possibly fall out of bed even if the bed was atop a mountain? That particular nurse showed no understanding of my condition or my predicament. I was just a ‘naughty child’ messing with the bed control in his mind. I was angry that he had taken away my control. The goal is control. An important part of control is having choice. While the goal is control, choice is a voice.
Control & Choice over:
- my health;
- the way in which my Carers interact with me;
- my environment;
- my own being.
In conclusion, one of my dreams and aspiration include that of experiencing individual choice and control over my life, to be supported with expressing my preferences using my preferred style of communication and to keep well and healthy. Control with Choice is empowering. No control or choice is both demeaning and dehumanising. A paucity of control and choice can lead an otherwise placid person into exhibiting BOC. Sheer frustration from a curtailment of control and cancelled choice without an effective means of communication, is a recipe for outbursts of anger (even from me).
As health care professionals, disability staff and educators we can learn from Tony's insight and employ a greater sense of empathy, curiosity and detective work when trying to understand the communication behind the individual's behaviour by looking beyond the present moment.
About the writers:
Dolly Bhargava, is a Speech Pathologist with a Masters in Special Education. Through the National Disability Insurance Scheme (NDIS) she works as a Behaviour Support Practioner and Speech Pathologist. Over the last 21 years, she has been working with children, adolescents and adults with complex social, emotional and behavioural difficulties (EBD) in a variety of settings such as early childhood, schools, accommodation, post school options, employment and corrective services. Dolly is the founder of Behaviour Help (www.behaviourhelp.com). Behaviour Help consultancy, training and resources (apps, books) aim to educate, equip and enable individuals with EBD with the necessary skills to help them learn positive ways of behaving and managing their emotions.
Tony Jones is a teacher with a Masters in Special Education with over forty years experience. Although currently retired, he still maintains his website talksense.weebly.com a not –for-profit, ad-free, guide to Special Education with a particular focus on communication and Profound Learning Difficulties. In 2020, Tony had a stroke which put him in hospital for several weeks resulting in severe disability. Being a Person Of Disability with impaired speech now has given Tony an unique and fresh perspective with an insider’s insight into communication and disability. Tony has worked across the world in countries from America to Taiwan. He has experience with children, adolescents and adults with a variety of special need requirements. He has lectured to parents, teachers and therapists. His work has gained national recognition including the outright winner of the National Training Agency’s Innovation award for the UK and the first Makaton Centre Of Excellence Award for a UK college. He is the author of several communication programs.