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Speaking Compassionately & Respectfully To Kids With Medical Special Needs, by Heidi Indahl

Updated: Feb 11, 2020

A few nights ago, I was sitting near my daughter Lucie as she fell asleep and she told me that she wishes she was born like the rest of us; that she hates that she has epilepsy.  With a chronic medical condition, she endures a lot of necessary pokes, pills, and procedures.  They wear on her and make her feel different from everyone else.  Somedays are better than others.

As a parent this can be a stressful thing for both me and my child.  I can accept (if not always understand) that this cross is one that Lucie and I (along with the rest of our family) have been asked to bear and can integrate that with my worldly understandings.  At only five, it is much harder for her.

The way that staff interact with us can make or break each hospital and clinic experience, and she will always be back soon enough to remember the last visit.  Here are three subtle things that I’ve noticed can make a big difference in how she responds to situations, how she feels about her medical condition in general, and why they matter.

Please don’t say it won’t hurt if it will.

Trust me on this.  Nothing breaks the confidence of a child faster than being lied to.  It may feel more compassionate to tell her it isn’t going to hurt, but that white lie matters.  It means she might fight you next time on something that really shouldn’t hurt.  Don’t judge a child’s ability to remember by their age or cognitive functioning!

Instead, if she asks be honest about how much it might hurt, how long it might hurt, where it might hurt.  Just because she is five doesn’t mean she isn’t pretty mature when it comes to these things.  Give her the information she asks for as plainly and simply and honestly as you can.  You can also offer her a choice of how she would like to deal with the hurt.  Does she want to hold my hand or sit on my lap?  Sometimes she does and sometimes she doesn’t.  Giving her the choice of how to deal with the situation helps her feel more in control.

Please don’t try to trick or distract her into cooperation.

Distractions can be an effective coping technique when they are freely chosen.  Show her the new toy and ask her if she would like to use that during the procedure.  She has to live with this condition for the rest of her life.  Let her choose how to deal with discomforts.  Let her learn to advocate for her preferences.  If she wants to sit quietly and watch, let her.

She is a tough kid and she really can do it.  Don’t assume that she is too young to understand or cooperate.   If she can’t, I am happy to give her a big bear hug and hold her and talk to her so that you can do your job, all while acknowledging her feelings about the situation.    The same goes for if she won’t, but I find that becomes necessary a lot less often with the building of trust through honesty and empowering her to make her own decisions about distractions.   (And if her coping technique today is to stare at the television and pretend you don’t exist.  Just go with it.)

Please don’t offer a choice if there isn’t one. This is another fine line.  Sometimes what you are asking to do is entirely harmless and there is no reason for her to say no, but what if she does?  Even at five, I believe in my daughter’s bodily autonomy.  She doesn’t always know when to exercise it and offering non-choice choices gives her the opportunity to say no when she doesn’t really have a choice.  Which forces us into sending the message that her no doesn’t matter.

Except her no is very powerful and it is never too early to teach a young girl or boy about consent.  No means no.  Don’t offer a choice unless you are prepared to respect her no.  Instead, build trust through honesty and empowering her to make her own authentic decisions. Of course she is going to not want to participate in some of the activities that are necessary for her continued good health. She’s five and not in a place to make an informed decision.  The key is not to ask her if she doesn’t really have a choice.

Why do these seemingly small and subtle things matter?  

For me it is about trust, respect, and consent.  I am building trust with my child and she is building trust with you.  She may not have a lot of control over her actual treatment right now, but I want her to trust you when it comes time that she does.  I want her to trust that I am doing my best to make very difficult decisions about her health.  I want to respect her dignity and value as an individual by honoring her choices whenever possible- but that means not giving her choices I’m not willing or able to abide by.

We absolutely can not take consent too seriously in our current culture!  We need to not tell kids,but show them, that their no is powerful and should be respected so that they quickly realize unsafe situations.  Situations where their body may be at risk from another person be that from physical or sexual assault- this matters! Not only that, but I believe it matters even more in the case of vulnerable children and adults who may have mental or physical impairments that lead them to someday believe that this is the only “love” or “special treatment” they are worthy of.

Because they are worth so much more!

I believe that this small shift in speaking with kids in medical situations could help everyone, but the negative effects add up more quickly for those receiving regular medical care.  Like anyone, my daughter has good days and bad days.  I can’t shift her appointments and care around to when I know she will be feeling cooperative and cheerful.  I do believe, however, that showing her respect by honoring her choices and control over her body (even on grumpy days!) will serve all of us, and especially Lucie, now and in the future.

Do you have a child with special medical needs?  Have you noticed any of these things?  Do you have other ways of speaking to your child about their condition that you’ve found helpful?  Please share your thoughts in the comments below!