Beyond the Box Basics Consulting
Barbara Laird, BEd.
It makes me extremely angry when anyone suggests that an individual with Down syndrome is stubborn, non-compliant or “bad.” They are not. They lack the skills and the tools to communicate effectively with us. The only way we will listen is for them to behave in a way that gets our attention. And it works, every time.
Individuals with Down syndrome, especially in their younger years, have few efficient communication skills. Try to imagine what it must be like for someone with limited communication ability. They have no proper way to express their feelings; whether they are hurt, upset, tired, sick, angry, lonely or scared. They may not be able to tell us what they want, or do not want. They don’t have the skills to let us know that something in their environment is driving their sensory system crazy. They may have a health issue that they cannot tell us about. It could be that their throat hurts, their ears are plugged, they have PMS, their tummy is sore, their skin is cracked, they are tired or they are feeling anxious. The list of health related possibilities can be endless.
Always consider health issues first, if there is any change in the individual’s behaviour, or if inappropriate behaviours are ongoing. They may be trying to tell you through their behaviour that something is wrong within their body.
Even teens and adults may not have the words or understanding to express what is wrong. Communication breakdowns and/or the inability to communicate effectively can lead to huge misunderstandings of their actions and behaviours.
We must continue to include individuals with Down syndrome in inclusive school and community settings. But in doing so, we must realize that they will learn to model not only good but also bad behaviour; behaviour that in certain situations may be inappropriate.
Often people assume that individuals with Down syndrome will immediately and always behave, understand, remember, cope and cooperate as if they were a typically developing person. It is also assumed that they will learn after one mistake and remember the lesson forever. To make matters worse, most of the time we give our instructions and explanations in verbal form, not realizing that in many cases, this is the least effective way for an individual with Down syndrome to learn. Our assumptions, our method of “teaching” and their inability to communicate more than just nouns and basic wants can lead to such frustration for them and for us.
So, what can we do to help?
1. We need to understand the medical and genetic strengths and weaknesses of the person in our life with Down syndrome, and the cognitive challenges they may have. Never forget about their physical disability, the weaker gross and fine motor skills and the effect of hypotonia. Their ability to participate, to have successful experiences and to be included in activities greatly influences how they will behave.
Individuals with Down syndrome can become very tired, very quickly. Their gross and fine motor skill weaknesses and their hypotonia can cause basic activities like sitting, writing, running, walking and jumping to be very difficult, especially over long periods of time.
We need to give them lots of breaks. Always do a gross motor activity or resistive fine motor task before doing fine motor skills. Give them alternate ways to sit, to write, to tell us what they know. Scribe for them; try not to expend their limited energy on tasks that can be done in alternate ways such as stamping, circling, answering orally or pointing. Often we don’t even realize what they actually have learned or how “smart” they really are, simply because the traditional testing methods of talking and writing provide more challenges for the individual with Down syndrome than for the average person.
2. We must believe that all behaviour is a way of communicating with us. When we miss the message the first time, a person very quickly learns to escalate the behaviour to try and get us to understand what is bothering them. They are smart and very quickly learn to up the ante; they can go from touching, to hitting, to punching, to throwing.
We must become detectives. Behaviour is a puzzle to figure out what they really are trying to tell us, especially when we don’t get it the first time. They are not being bad, stubborn or non-compliant; they are attempting to communicate. The behaviour may be wrong, but we may have aided and abetted the situation to the point that the behaviour has escalated and become a problem. The infamous “sit down strike” also works well, especially when we want them to think, move, process information and respond in our time speed and not theirs.
So, remember, behaviour is a form of communication, and it is our task to discern what is being communicated.
“The CAUSE of behaviour is related to communication difficulties. The REMEDY to improve behaviour is to improve communication. The METHOD to improve communication is to use VISUAL COMMUNICATION SUPPORTS to aid and support the communication.” Linda Hodgson,
3. Keep a journal or an ABC form of what is happening before, during and after the behaviour. Track the behaviour, time, place, people, dates and events in the family life. Patterns will probably emerge, and then you can work towards preventing and anticipating behaviour. An ABC (Antecendents/Behaviour/Consequences) chart is part of Positive Behaviour Support.
“The best emergency management procedure is to avoid the emergency in the first place.” Tom Willis
“Sometimes we want things to be different, but we don’t want to do anything different.” Linda Hodgson
4. We have to teach more effective ways of communicating and to spend more time talking and teaching them about feelings. We need to help them understand and teach them to self-regulate their anxiety, stress and anger. Start talking about feelings by using photographs of themselves and you, and by looking into mirrors. Because they may have some memory difficulties, and because memory is further compromised when a person is anxious, stressed or angry, always support the teaching and coping with visual tools.
Sign language can work well as a primary method of communication in the early years, but it can have its limits as they age. Individuals with Down syndrome often have difficulty making some of the signs, and so make up their own which results in only their family being able to understand them. As they enter school, it can all break down. Most individuals within the school system and the wider world do not sign, so they are left without any way to communicate effectively. As they get closer to school entry, begin to pair sign language with other communication supports.
As speech develops, there are often problems with effective enunciation, and they often don’t know many words beyond names, nouns and a few verbs. Strategies to improve communication must involve visuals, visuals and more visuals. Use photographs, symbols, and any other kind of alternate and augmentative communication systems you can access, along with signing. Incorporate movement, touch, involvement and choice in the preparation and use of the visual tools. Remember that the body and gestures are also great visual tools.
Learn how to write Social Stories. These tales, coupled with photographs or symbols, can become your most valuable tool in helping an individual with Down Syndrome to understand why they need to behave and how do to so. (Tip: Google “Carol Gray” to learn more about Social Stories.)
Start teaching your children how to read. Label or name items they want to learn to read; put the words on pictures and photos; make up stories using words and pictures they have chosen; and be guided by their interests. Start writing books and making up sentences, using carrier phrases such as “I want…, I see…, I can… I love…” to teach verbs.
5. Have visual schedules for all routines and activities. Never assume that an individual with Down syndrome will remember or innately know something; instead, have a visual to remind the child of what is happening, about to happen or not happening. Carry a whiteboard, a pad of paper, an iPad or a phone with you at all times. Draw stick drawings, write words or show photos. This gives them the information they may be missing or may have forgotten, which causes them such angst.
6. When teaching a new routine to sidestep an unwanted behaviour, be creative, flexible and support the new routine with visual supports. You can’t change all behaviour overnight; you have to decide which “battle” you really want to fight. Chose first to deal with any concerns around safety for all. Then work on the behaviours that prevent them from being included, involved and accepted by their peers. Work on one new routine at a time, the one closest to success and the one most needed for participation and inclusion. Remember it takes at least 6 weeks and 60 times (and that is for a typical person) to learn a new routine or behaviour. Imagine how many more times it can take for a person with Down Syndrome.
“It’s easier to teach a new routine than to change an old behaviour.” Linda Hodgson
7. Try to access an Occupational Therapist assessment and/or consultation at least once a year. Many of the individual’s behaviour problems are a reaction to sensory issues and anxiety. If you can understand this area and alleviate the stresses and provide the supports necessary, many problematic behaviours will disappear. Occupational Therapists can also help with teaching self regulation, a skill that every individual with Down syndrome needs to learn, but one that takes much time, patience and visual support.
8. Remember to give individuals with Down syndrome lots of time. They require a much longer time to process information, to think, to answer, to respond. We need to step back, keep quiet and give them the time to think, to process, to understand. Individuals with Down syndrome are 45-second people in a 3-second world. Give them the time by cueing them, then counting to 15 silently, cueing again, counting to 15 a second time, cueing a third time and counting to 15 a third time. Do not speak to them while they are processing information. Ensure that on the third cue and after the third counting to 15 that there is success. Always include a visual cue with the verbal one.
9. Attending and listening can be so much harder for the individual with Down syndrome, so keeping their attention and keeping them focused means that we have to be flexible. Be flexible in allowing breaks, giving them alternative seating arrangements, tools and methods of working. Focusing on their interests and incorporating them into activities will motivate them and keep their interest longer. We need to understand that once a person with Down syndrome is overloaded, they are going to want to escape.
10. Choice is crucial: make everything a choice. The choices can be limited; at first, limit them to a very few at a time. (Give them two options to start with, and increase it slowly over time.) Giving choice increases their critical thinking skills and ensures that there will be more cooperation and eagerness in participating.
11. Patience, flexibility and humor are important words as you watch an individual with Down syndrome grow and develop into an independent person. Be flexible and include humor in everything that you do. Both of these strategies will go along way in helping individuals with Down syndrome become more flexible themselves, and willing to learn and cooperate. Along with the humour, regularly incorporate music, rhythm, movement, tactile, visual and sensory experiences into activities.
These are but some of the techniques that can be used to overcome “stubborn” behaviours. It is important to remember the physical and cognitive limitations for a person with Down syndrome. Everything is such hard work for them. And then when you add in all the expectations, rules, environmental issues, transitions and lack of communication skills, it becomes easier to understand how they become totally exhausted and overwhelmed.
Becoming a behaviour detective is a good way to see antecedent stimulates that will evoke undesirable behaviours. But first and foremost, remember, an undesirable behaviour is a form of communication – what is the temper tantrum or sit down strike telling us?
Barbara Laird is the parent of a daughter, Mel, who lives with Down syndrome. She does professional development, educational consulting and advocacy for all persons with disabilities. She can be reached at www.beyondtheboxbasics.com.