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

Preschoolers

Role modelling tasks

This is an excellent time to try medical play as a powerful way to role model the required care and to explore your child’s perceptions and reactions to the care that they need. Children in this age group learn through play.

Encouraging participation in tasks

Slowly give your child a few more simple tasks (eg, holding pieces of equipment, helping clean around a G tube site, drinking medicine from a small cup…).

Your child may be able to practice some tasks through medical play (eg, helping to remove tapes from a dressing or helping to apply a new dressing bandage); this will give him/her more confidence when he/she help do this care on him/herself!

Offering reasonable choices

By this stage, young children have definite preferences!

Let your child practice making choices in the non medical parts of their lives, as often as you can!

Make sure that the choices that you offer your child are simple and clear (eg, wear the green socks or the blue socks) and respect the choice that they make.

It is sometimes hard to see your child struggle with a choice that they have made (eg, trying to put on their shoes themselves) but this is the most powerful way for them to learn and grow as individuals.

Give them a chance to complete the task themselves, knowing that it will likely take longer and may involve some frustration.

If your child is struggling with a task, resist the urge to “just do it yourself”, while this might get the shoes on quickly; it is teaching very negative lessons to your child: that he/she was not good enough to do the job, that it is not worth trying again if the parent just ends up doing it… This is not what we want to teach our children!

Instead, try to offer support so that he/she can complete the task him/herself, for eg, “Sometimes it can help if you try…”

https://complexcareathomeforchildren.com/prepare-your-child/encourage-autonomy/

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