People with Angelman syndrome are known for their wide smiles, laughter, and fun personality. This was evident early with Leia as she heartily laughed at a pink horse from the Early Learning Centre at just 10 weeks old. By the time she was a year she would laugh so hard she would forget to breathe and often flapped her hands whilst she was doing it. Of course, we had no idea that laughter could be an indication of a genetic disorder. By the time Leia was 5 there was another more challenging side emerging. “Challenging behaviour” is also well documented for Angelman syndrome and indeed when we sought help everyone said it was expected. When we eventually did get someone prepared to offer us help it was, with hindsight, awful. We were told we should do anything to snap her out of the behaviour and that Leia was behaving deliberately and with menace. I have no doubts that this advice has left lasting scars for all of us and this blog post will hopefully stop some others from making the same mistakes as we did.
This list contains some of the learning that helped change my viewpoint.
Behaviour is coming from a place of distress and conflict.
Language matters. When you change the language you change how you feel about it and therefore your actions.
When someone is in a place of distress they cannot control their behaviour because they feel unsafe.
Distress causes people to go into fight, flight or freeze mode.
All behaviours have developed in humans as a mechanism of survival, e.g., anger gives us the strength and ability to protect ourselves and others.
Brains are not fully developed until 25 years of age. This means we cannot expect people to regulate themselves completely until they are at least this age.
To help regulate someone else we need to be regulated ourselves.
We all have basic underlying needs. If these needs are not met we cannot function correctly.
If I had known this when Leia was 5, I would never have followed the advice we got and would have saved all of us trauma and therefore increased episodes where Leia was distressed.
Learning about underlying needs helped us to think about the things missing from Leia’s life that she needed to remain regulated. This following list is from my lecturer Deborah Lobb during my PGCE. It is important to recognise that whilst these needs are universal the different levels of need are individual, and they may change from day to day. This makes it seem complicated but in reality it is easy to tell the things that matter most once you start looking for them. The trick is figuring out what you are going to do with your new found knowledge.
None of the above necessarily comes as easily for disabled people as their peers. Neurotypical people have more natural opportunities to get their needs met. This means that they often do not consider the process for meeting their own underlying needs. This in turn can make it more difficult to recognise that others may need support. Or if the need for support is recognised it can be difficult to understand what to do.
As each person is an individual, the things I do for Leia do not always suit clients and vice versa but I will explain some of the things I do and have done for Leia to give you a general idea.
Connected and Understood
A large part of this is Leia’s communication. It has taken a long time to get where we are now and to build up communication for all aspects of life takes a lot of modelling of communication. Communication is of course about all aspects of life but understanding about dysregulation and underlying needs can help. It is not easy to model the communication you need for being dysregulated and keep it feeling natural. It may be easier to talk through others e.g., characters in a book or TV show or through imaginative play with dolls or stuffed animals.
Being with people can either be energy giving if you are an extrovert or energy sapping if you are an introvert. If you are one and the person you are supporting is the other, it can be exceedingly difficult to understand how the other is feeling. Sometimes having a task to do when you meet people can take away the initial awkwardness. Of course, you can connect with others in many ways now and supporting someone to connect to others through pictures, GiFs, or music can be an effective way to connect that does not rely on literacy skills.
One thing I did not appreciate when Leia was young was that she can and does have good relationships with people who want to be around her because she is Leia. Please recognise this about your own child and then look for those who instantly light up when they see your child. These are people worth fostering relationships with. Many people with disabilities do need support to keep their relationships going so be prepared that you may need to take an active interest in this. But know that it is beneficial.
In Control
We have recognised that a lot of the time Leia does not have enough information to help her feel safe. Whilst we are still experimenting with the best way to ensure Leia has all the information she needs we use a variety of resources. She has supports in her talker, a printed schedule of what is happening that day and several laminated sheets that we can write messages and draw pictures on in the moment. One thing that is important to Leia is knowing where all her important people are. We recognised that Leia needed to know a lot of information about her favourite people because she talks and asks about them all the time. Figuring out what is important for the person you are supporting takes observation and time.
Decision making skills and the opportunity to participate in genuine choice making are great skills to develop and allow people to have control over their lives. Every teenager I have worked with has told me that they do not have enough control over their lives. Whilst that is also likely to be true for their neurotypical peers, disabled people are less likely to get the opportunities to make choices that matter. Of course, children do not get to make all the decisions over their own lives but consider age-appropriate choices can be a good guide. Typical choices include the clothes that they wear, what they eat for a snack (within reason), activities they participate in, where they go and who they are friends with. More complex choices may have to take place over several sessions. Writing information down may be better for processing than verbal discussion alone. Likewise, the final choices may have to be written down. Finally, it is important that we recognise the impact of control over the entire household. It is okay to say that a decision is not reasonable.
Feeling good
We all know that getting sleep, eating healthily, exercising and being in nature is good for us. But how do you manage these things if your body has different signals from everyone else. Or if you are a wheelchair user. We played around with doses and brands of melatonin for a long time before we finally found what worked for Leia. It is worth persevering with. Whilst it may seem that children and adults can function well on little sleep they function better with sleep. Exercising is difficult for people with motor difficulties and wheelchair users. This is something that needs more attention. Likewise, whilst there are some improvements towards accessibility more should be done. Being physically healthy also involves pain management. Having access to a pain scale but also the ability to discuss how the pain is affecting them at that moment is helpful. I stole the one below from a friend in Australia.
Feeling good also requires us to be regulated; no one is happy or feels good when they are not in control over their own actions. What I did not realise when Leia was 5 was that it was up to us to remain regulated to help her feel safe. To be honest this was my natural parenting style, but I doubted myself because I wrongly believed that disabled children were different and therefore needed different practices and techniques. I had no experience of disability and professionals continually told us that they knew best. What else was there to believe? We are playing catch up now but one technique I use to great effect is to take a deep breath and then picture Leia laughing heartily at something. This works by making me relax, this then completely changes my body and face so that I give off a safe aura. That is what we should aim for when someone is distressed. Another technique I sometimes use is to wonder what the reason behind the distress is. This works in a comparable way because when we are thinking our faces relax and we look less threatening! I have learned the hard way that getting embroiled in a stand-off, time-outs and punishments are ineffective at this moment in time. This is because Leia cannot access her thinking brain and therefore cannot make reasonable or informed decisions when she is in such a place of distress. Do not get me wrong, it is not that there should not be consequences for behaviour but in that exact moment in time is not the place to discuss it. You need to connect first so that the person can calm down. When the person is calm there can then be discussion of reasonable and natural consequences of what has happened. Keeping yourself regulated to help your child stay regulated is hard, but it is worthwhile.
Achievement
The last thing to discuss in this whistlestop tour is achievement. Of course, what comes easily for some is a major achievement for others. What is important is recognising that achievements need to be real and not tokenistic. Just being present is not an achievement. Also look out for achievements that meet someone’s goal to the detriment of the child’s self-awareness. Schools are full of these; praise is given for sitting still when it is more important for the individual that they recognised the need to move so they could maintain concentration and remain regulated. This means that for that individual sitting still is not an achievement. To feel good an achievement must be something that takes effort but not at the cost of self-awareness.
This may be a lot of information to absorb but do not let that overwhelm you. Just by understanding that your child is not deliberately being mean or nasty can be a big step towards a calmer life for all of you. Being disabled does not mean that you are destined to have challenging behaviour. What it does mean is that you are more likely to encounter situations that put you in a state of distress. The more distress and trauma we encounter the more our brains send us into a distressed mode to survive. Challenging behaviour is nothing more than a natural reaction to feeling unsafe and the reflexes and actions of individuals are likely to occur in most humans given the same set of circumstances.