Parents who have been through this with their children have suggested: 

• It is hard but very important to try to be patient with yourself and each other while you learn new ways of communicating. 
• Try to learn and practice more than one way of communicating
• Start learning new ways to communicate sooner rather than later. It gets harder for children to learn new skills as they get weaker and more tired.

There are many different ways of communicating. Some useful tools include:

• Sign language or made-up signals
• Paper and pencils
• Keyboards, tablets or computers 
• Apps for a phone or computer
• Communication boards with pictures of tasks or emotions
• Special communication devices from a hospital or rehabilitation centre.

Choices between two objects: 

• Hold one object in each hand, like two books or two different foods. Ask your child to point to the one they want. Your child can point by moving a finger, hand, foot, an arm, their head, or even their eyes. 

Choices between two (or more) things you cannot show your child:

• Explain that you are going to offer two (or more) things, one at a time. Say that you will wait after each one to see if they want to choose it. The child might say, “yes” or signal “yes” in another way.
• If your child uses a signal for, “yes”, remind them what it is. Ask your child to show you so you recognize it when you see it.
• Say, for example, “I wonder if you would rather listen to music or go for a walk? First, do you want to listen to music?” Wait for at least 10 seconds for an answer. If the child does not answer, ask, “Do you want to go for a walk?”
• If they do not say “yes” to either of the choices, ask, “Do you want to do something else instead?” If they say “yes” then try again with different choices.

Instead of learning one signal to say “yes” and another signal to say “no,” focus on using “yes” signals. If the child does not give you the signal, it means “no.” Signals for “yes” can be things like:

• Head nodding 
• Thumbs up
• Raising eyebrows
• Looking up
• Wiggling their nose or toes 
• Squeezing your hand
• Moving any body part on purpose

When you are not sure what a child wants or needs, start by asking broad questions, like, “Are you uncomfortable?” Then ask questions that are more and more specific, like, “Is it your head?” Then ask, “Is it sore?” or “is it itchy?” as your child’s answers help to narrow down the options. 

Although these approaches can take a long time, giving children choices helps them have some control. When you and your child begin to feel frustrated, it can help to ask, “Should we keep trying or should we take a break? I’ll ask you that again and wait for you to show me “yes” after the one that you want me to do.”

For more information about ways to communicate, tools that can help, how to talk about different topics, figuring out what to ask, and more, see the Staying Connected Handbook.