Caregivers already have many responsibilities on their plate. In terms of communication, it just gets harder for caregivers when they have a child with severe physical and cognitive disabilities that severely affect their ability to communicate.
When children can’t communicate, they can’t fulfill a human need. They can’t let their parents and/or caregivers know what they want or need, much less develop a meaningful connection or feel part of the family they live in.
Caregiver communication challenges
When interacting with children who are not verbal, caregivers face two challenges:
- Caregivers need to adjust their expectations when they see their child in a body that is developing “within normal” or “close to normal” parameters, but with a brain that is not developing, processing or responding to the level expected for that child’s age.
- Since the primary parts of the brain in charge of emotions and behaviours develop better than the areas in charge of superior brain functions like communication, motor skills and perceptual skills; caregivers need to deal with behaviours that seem typical for the child’s chronological age (like the “terrible twos” and their temper tantrums) without any age appropriate tools.
Many times, the exisiting communication skills of caregivers and healthcare workers don’t allow them to successfully interpret what the children are reacting to, and at the same time children can’t use other ways to communicate; therefore, the children’s needs are not met and in the attempt, the caregivers and health care workers end up reinforcing maladaptive behaviours.
Caregiver communication and child interaction is a collaborative effort. Here are some tips to remember when you are communicating with a non-verbal child.
- Use lots of non-verbal behaviours and non-verbal language to help the child deal with changes or transitions. They need extra-preparation. For example, if it is time to wake up, don’t just turn on the lamp or open the blinds. Call the child’s name, associate a different voice intonation to that time of the day to alert him or her it is time to wake up, way before he or she awakens with the light. This way, the child will learn that when they hear that voice, with that intonation, it will mean that the light will appear, and their mom or dad will be near soon.
Even though non-verbal children can’t talk to express their needs or emotions, remember that their primary brains are usually developing better, so they can feel. And they can learn those “non-verbal behaviours” that don’t need words or cognition to improve communication with the caregiver.
- Caregiver communication and child relationships improve when you ask for their permission before doing any of their daily care activities. These children need to be prepared for changes; they need clear transitions to avoid surprises that can confuse them and upset them. If you need to wipe their mouth or their nose, tell them what you are going to do, show them the tissue, and then proceed to wipe their mouths. With the tone of your voice and the visual cue, they will associate that something will happen to them and that it is OK, it will feel better afterwards.
- 3. “They may forget what you said — but they will never forget how you made them feel Carl W. Buehner
This quote is very appropriate especially when we are interacting with children that have communication challenges. Develop trust; ask this from all the people that interact with the child. If these children feel that they can trust you because they feel safe, loved, and comfortable each time you are with them, then they will attempt more communication with caregivers and other people who make them feel that way.
- As these children feel more comfortable with people and situations, look at subtle changes in their body language: A finger moving, an eyebrow lifting, a small smile, a tight lip. All of these are communications attempts that we can reinforce (if pleasurable) by identifying what we think generated the change and repeating it.
- Use these body movements to associate them to a behaviour that can have meaning. For example, if the non-verbal child can only blink their eyes or turn their head, teach them that this can have meaning. Those movements can be a YES or a NO.
- Come down to their level and respect their personal space. It is understandable that you need to be at different levels for some of the activities you do with your child (for example if you are standing and the child is on the bed), but when you are communicating with them go down to their level. Have eye contact, and give them the preparation for the activity.
- Even if they don’t talk, keep on talking to them. Talking to them is still an important aspect of caregiver communication with the non-verbal child. They will learn to distinguish different interactions by the tone of your voice. They will learn that a slow, quiet and measured voice means you want them to stay still so they won’t get hurt as you change their IV or G-tube. Likewise, a cheerful voice means that they will be okay even if they make sudden movements.