A Mum’s Reflection on Behaviour when you have Down Syndrome
A few people recently have asked me to share the things I have learnt about behaviour through parenting a child with Down Syndrome. I’d like to say here that not all children with Down Syndrome behave in the same way, just as no two typical children behave in the same way. I do think, though, that when you have a series of physiological and therefore intellectual differences, behaviour will be affected in one way or another.
When you have Down Syndrome you have reduced language skills. That means you cannot quickly and easily form the words to ask for things, to give reasons and to debate things. To give you some examples. When Max was around 7yrs old, he suddenly decided to bolt off as we were walking along. My mouth started to form the words ‘Stop, where are you going?’ when I realised he had seen the drinking fountain and wanted some water. He didn’t have the skills to say ‘I am thirsty, I want to have a drink’, rather he avoided the effort of having to form that sentence and did what any one of us would do if we didn’t have the words, just did it.
Another example. Max was 10 yrs old. He found a rubber fish belonging to his smaller brother and poked a hole in it. He got reprimanded and sent to his room. When asked why he did it, he took some time to say ‘How do the fishermen hook the fish up?’ In other words rather than asking this question to start with, he just went ahead and enacted it.
I often say to people – try imagining what it would be like if you couldn’t use words to say what you want. Say you saw a really beautiful object and just really wanted to touch it but you didn’t have the words to say that. I don’t think many people would be able to refrain from touching it and people seem so surprised when children with Down Syndrome pick something up or take something without asking. Say you didn’t want to do something or go somewhere? How would you express it? By just sitting down? Children with Down Syndrome get accused of being ‘stubborn’ when in fact it is just the expression of an opinion.
Auditory Processing Skills
Just as forming words and sentences are an effort when you have Down Syndrome, so is it an effort to break down what other people are saying to you. This is especially relevant at school. Imagine at mat time what it would be like to listen to someone at the front of the class speaking in French, when you can’t speak French. I think this is what it is like for Max, he has some French but is not fluent and therefore it is an effort to work out what it going on. He, like all kids, is expected to sit still for 40 minutes of instruction time, but he, unlike other kids, finds it ten or maybe 100 times harder. So what would you do if you were faced with another marathon effort of listening to yet another French movie? You might even just stand up and walk away. Or you might start paying attention to one of your chums on the mat, thus getting yourself into trouble.
How to get around this? Find different ways to get the point across. Simplify the instructions. Use simple sentences. Use hand gestures. Hand over hand and sometimes physical guidance can be used. Shorten instruction time.
Time is of the essence
When you have Down Syndrome it takes time to modify your behaviour. It takes an average child x7 attempts at something new before they learn it, this figure could be tripled for children with Down Syndrome. Undoing habits, as we all know, takes longer.
Use social stories, keep the rules simple. It also takes time for a child to respond to a request – you need to deliver a request then wait then deliver it again.
Our reactions based on presumption
Sometimes bahaviours when you have Down Syndrome are so out of the ordinary they are shocking to people who don’t have Down Sydnrome! Going back to the rubber fish above. To the average person, Max’s actions might seem quite unusual and indicate that he is wishing to destroy someone else’s property. But for Max, he broke the fish because he forgot that you can ask questions instead of just doing something. Another example. Max might snatch someone’s pencil case and run off. For Max this isn’t necessarily about snatching/breaking boundaries/being unkind, the motivation is sometimes grounded in something totally different to the average child. For instance Max might actually be mesmerised by the reaction he gets or wishing to seek attention.
When you have Down Syndrome, you are vulnerable to being given a ‘label’. For example I was shocked to hear from Max’s old preschool teachers that well after Max had left preschool, children would still blame Max if something had gone wrong. ‘Who did that?’ would be met with ‘Max did it’. And he wasn’t even there! I can even think of examples at home when my son has been blamed for something that he actually didn’t do. And what’s worse, is that he can offer a shake of the head or a ‘no’ but is unable to go into any detail as to why he didn’t do what he is accused of. It’s a trap that we all fall into, after experiencing mistake after mistake, but it is something to be aware of.
Sometimes we can be prone to falling into the trap of ‘extrapolating’ or distorting a behaviour out of all shape. What I mean is that Max does something and you start to worry that he will never change. I have heard some people tell a child with Down Syndrome that their behaviour (quite natural to them) will lead them to prison. It’s not to say that kids don’t need to learn the rules, they just don’t need to be traumatised in the process.
Max is always developing and changing and just when you think he is not moving past a worrisome behaviour, he does.
It’s a matter of not sensationalizing anything and most definitely not focussing on the negative. Don’t mystify an errant behaviour such as swearing. Don’t build a deviant picture.
Control the Environment
Going back to the language thing – children with Down Syndrome make up for a lack of language skill by honing their visual skills. There is not much Max would not notice – and the reactions on someone’s face are a treasure trove of delight for Max, a kind of ‘fireworks’ display! So if you don’t want him to do something, don’t give him a reaction.
Sometimes it is easier to modify the environment. An example. The teachers were struggling to stop Max from re-entering the classrooms at lunch time, solution, lock the classroom doors. Another. Max is paying someone attention on the mat repeatedly. Move the other child. And sometimes other kids have a greater ability to regulate their reaction than the child with the disability has to modify their behaviour.
Routines and the Power of the Peer
Just by being with children his own age, Max can understand routines and expectations, because he can see what everyone else is doing. This is a powerful behaviour tool. Also, if Max has a routine he definitely feels more in control, things do not take him by surprise and force him into a state of resistance.
Think, as quoted by Sarah Goodall, specialist therapist, ‘Would you go to work if you didn’t get paid?’ Always think – what can I offer this child to get them motivated? Not just physical rewards but activities. Use the ‘First, then’ approach – just by cleverly switching the order of activities you can get a child to do something – first you do this, then you can do that. Be even more clever. Offer a really bad option along with the option you want – the child is more likely to take up the option you want! But just by giving them a choice it reduces resistance. Author and Mother, Natalie Hale’s AZA technique is another great one – talk at length about the good option, get the child on board, then explain they have to do the bad option before they get the good option.
A child’s behaviour will be affected by a natural ebb and flow of lucidity or in the words of Frances Adlam, educator and author, ‘natural rhythms’. It’s a good idea to modify an activity to respond to a child’s lucidity level – pull back on trying to get a child that is not in the mood to comply, modify the activity to suit. A bit like those last days of term when the teacher puts on a movie. If a child is tired they are less likely to be aware of making a possible mistake.
In the world of behavioural therapy the term ‘impulsion’ does not exist. There is always a motivator to behaviour. Whether a child thinks about what they are going to do in advance may be affected by things such as their ability to communicate and natural rhythms. But whatever it is, there is a motivator. That’s why behaviour therapists love the ABA theory. What was happening before? What was it like for the child? How would you respond without the typical modes of communication? You can investigate the ABA theory of behaviour further via Wikipedia.
Just one of the gang
Be aware of the things that make a child feel more different than they already feel – for example, not getting them to wear ribbons for easy identification. Keeping in mind a child’s dignity and self-esteem at all time. Looking for opportunities for friendship. Being alone and different is going to definitely send you a bit crazy. Being along often results in attention seeking behaviour.
Ignore, Redirect, Praise.
What does it mean? Well, Ignore, does NOT mean ignore the child. It means ignore a behaviour you do not like. Say a child is making an annoying sound; say a ‘self-stimulating’ sound. Firstly that sound is being used by that child sub consciously, a bit like when we hum along to ourselves whist doing something. Remembering that children with Down syndrome are fascinated by facial reactions, you don’t want to be offering a facial reaction to a sound you do not like. Should you wish for the sound to cease, you need to move on to the next tactic – Redirect.
Redirect means get the child to transfer their attention to something else. Redirect is such a useful tactic and is so under used. It’s basic really, if a child is bored or doesn’t know how to do something, they will start to misbehave. Just by getting them hooked into doing something you will reduce negative behaviours. A little mantra: ‘Unstructured time is dangerous time’.
Finally, Praise. Praise is probably the most important thing of all. It ties all of the above together. Being aware of yourself that you have not fallen into a cycle of criticism for the child with special needs. That when a child is working well they get attention, you give them some attention! That the child is being given jobs they can do and be praised for. What incentive is there if you have never experienced the high-pitched squeals of praise or gentle tap on the back coupled with a warm smile? You don’t’ know what you’re working for if you have never experienced it.
What if you had only ever known someone to be angry or unhappy with you? What’s the point in listening to anything they say? It’s as simple as this – show the child how much fun you can be and they will naturally want to make you happy. Gain someone’s trust and they will want to help you, they will respect you. Nurture a positive relationship, not a negative one.
Remember… behaviour modification requires manipulating the environment, understanding the motivators, acceptance, time to listen, self-awareness and awareness of what is going on. You have to be clever about it but mostly you have to take the time to build a positive relationship. And all the time you have to imagine what it is like to have that disability. Be natural but mindful.
Antonia Hannah, April 2015