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Caring for disabled children - and their parents

Caring for disabled children – and their parents

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The concept of working closely with disabled individuals is a daunting responsibility to comprehend. What most do not consider when contemplating caring for a disabled person is that they will work with more than just the patient; they will also work with the parents. Here are three types of parents you can expect to work with.

Parents who get stuck in the denial stage

The Five Stages of Grief is a widely accepted understanding of the psychological process one goes through when dealing with loss. When a child is born with a disability, parents are thrown into this process of dealing with the loss of their dreams of normalcy. Getting to the final stage, Acceptance, is easier for some parents than for others. When progressing through the stages, some parents settle on denial because they are not ready or refuse to face reality.

Consider a child who has a disability that is so debilitating and neurologically restricting that their mental capacity will never exceed that of an infant. This child will never form attachments or bonds, because their limbic system is underdeveloped and their amygdala cannot process the emotions of these connections. Parents, understandably, struggle to accept this fact. The pain of knowing that your child is unable to feel love or an attachment makes getting stuck in the denial stage relatable.

What makes a parent's denial difficult to work with is that they expect their child's care staff to perform developmental tasks and work on goals, hoping in vain that someday their child might be able to do these things on their own. Sadly, this is an impossibility with some patients. If you can silently sit back and listen to a parent's denial and perform tasks that are more for their sanity than for the development of the child, this type of work may be perfect for you.

Over-reactive parents

As care staff, you are expected to abide by house rules, follow assigned tasks and, most importantly, look after your charge. The smallest things can send some parents for a loop, but parents with disabled children are more prone to these over-reactive tendencies. They are responsible for a disabled child, after all, and it is entirely in their right to be more over the top when things go amiss.

If you are working with a child who presents with SIB (self-injurious behavior), for example, the smallest scratch or bruise can set off an over-reactive parent. Since children with SIB are prone to incident, it should not be much of a surprise when they come home with a boo-boo. The parent may go into panic mode and start lathering their child up with ointments and Band-Aids. Though children with disabilities are more susceptible to infection and sickness, over-reactive parents will go overboard and expect you to do so as well. If you are going to work with parents like this, you have to be understanding and patient enough to allow them their time to overreact. Then do as you are bid and follow the instructions and requests you are given.

Overprotective parents

When working with disabled children, you have a greater responsibility to keep them safe: from others, the environment and themselves. This is a large task, made even larger by the looming shadow of an overprotective parent.

A common trait among overprotective parents of disabled children is that they struggle allowing their child to do things on their own. Seeing their child struggle with everyday tasks often makes parents want to step in to protect their child from spending too much time on something or to protect them from potential failure.

Zach Anner makes many great points in his videos on disability; his video, "Tips for Raising Kids with Disabilities" is great for overprotective parents. If more parents allowed their children to struggle, their children would likely grow up able to do more things independently. As care staff, it is your job to keep these overprotective parents happy, but it is also your job to help their child grow and develop. If you are able to handle explaining to overprotective parents the benefits of allowing their child out of the protective bubble, then you are well-suited to work with them.

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