Encourage autonomy

What is autonomy?

Autonomy is the ability of a person to act on their own free will. When a child has autonomy, even in small ways, it helps build his confidence, self-esteem and independence.
Autonomy is a critical part of learning for all children.

In most children (even toddlers and preschoolers), key ways to encourage autonomy include:

explicitly role modeling desired tasks,
encouraging your child to try tasks that he/she has not done before,
offering realistic choices,
respecting their efforts to complete the task.

But what about the child who has special medical needs?

Building autonomy is especially important for the child with chronic health issues or care needs. This child may feel powerless because he/she has to follow so many “rules” set by others, like his/her parents, nurses and doctors. If we let this child participate in his/her care, he/she has the chance to learn and understand the care better. This helps him/her feel more in control and helps build self-esteem. Ultimately, these are the characteristics of a resilient child, one who can face new challenges in a positive way.

For the child that must have certain regular care (eg, tracheostomy or gastrostomy care), you can offer choices related to the care (see table below for more details) and perhaps, just as importantly, you can offer your child lots of reasonable choices in the other areas of their daily life (eg, which toy do they wish to play with, which pair of socks to wear, etc).

Some children do have limited autonomy, usually because they are unable to understand or because they do not have the motor control or strength to carry out tasks; even so, these children can be offered realistic choices in a way that matches their abilities.

Have a look at some of the examples below to get you started. Talk to your health care team to find specific suggestions for your child.

Encouraging autonomy: some examples by developmental stage

Older infants and toddlers

Role modelling tasks

If you have already been talking to your child in simple language about the required care, role modeling tasks using medical play is an excellent tool to try next.

Encouraging participation in tasks

Start with simple, easy tasks, like holding on to a piece of equipment that is required for the child’s care (eg, holding a piece of gauze).

Remember: Be patient! At first, when your child “helps” with his or her care, the process will take longer. A young toddler may put that piece of gauze in their mouth! This is a chance to give your child gentle feedback and to try again (“No, don’t put the gauze in your mouth; let’s try again with a clean piece”). At this age, children are starting to learn through trial and error.

Don’t forget to give positive feedback and to recognize your child’s strengths and successes.

Offering reasonable choices

There are lots of choices that children in this age group can be offered. Read How to offer realistic choices for more details.

Always consider what your child can do/decide instead of what they cannot do; children learn best with a positive perspective.

Be careful not to fall into the “open ended choice” trap. For example, don’t ask your child if he/she wants to have their tracheostomy suctioned; he/she might say NO! Instead, ask whether he/she wants to sit or lie down, while the tracheostomy is being suctioned.

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