Therapy Tip-Helping Your Child Understand/Pain Scales

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today's tip is truly based on my personal and professional experience:

Helping Your Child Understand Pain/ Using Pain Scales

Pain scales are nothing new. They have been used in the medical system for a long time. The series of faces ranging from neutral to crying to help patients describe their level of pain is often used in medical settings.

I liked the idea of using a pain scale with my daughter but I didn't like the common system or it's method. So, I came up with my own.

Background/The Problem:
My daughter has Down syndrome, a history of two different heart issues, obstructive sleep apnea, a lung cyst, and asthma. Her medical problems have far out-weighed her developmental ones. She has been admitted to the hospital over 20 times for illnesses alone. During these hospital admissions, chest x-rays, IVs (sometimes multiple ones at once), and blood draws are all routine. In addition, she has had numerous tests like sleep studies or swallow studies that have added to her medical experience.

All of these have led to one big issue with Jaycee. She has major anxiety related to anything medically related. I have tried to talk to her and let her know what is happening. Yet, she would fight, resist touching, hit, scream, cry, and kick when she felt threatened. When she was smaller, we could hold her down and fight our way through it. As she has gotten older, her anxiety has increased and our ability to just muddle through is not possible. 

I did not blame her for having her physical and emotional reactions. They were completely justified. The problem became clear to me. How can I help my minimally verbal child understand and differentiate between things that hurt and things that don't? A solution was needed because it got to where Jaycee was having a huge reaction to things that do not hurt like a chest x-ray or a dentist only looking in her mouth.

The Solution:

I decided I would make my own version of a pain scale for Jaycee. Since she uses a speech generating communication device, communicating in pictures is her normal, which means these should make sense to her.  

Front Side of the pain scale cards

Here are things I considered with Jaycee's pain scale:

-I did a scale of 0-5 to make it less complicated.

-I made a list of things that caused Jaycee to be upset or have meltdowns.

-I then assigned each problem area a rating.

-I then selected a picture that went with each pain rating.

-I made an individual card for each pain rating with the problems/meltdown areas on the back. This was to help me to stay consistent when I used them with Jaycee. For example, I didn't want to talk to her about getting an x-ray and describe it as a 0 one time and a 1 another time. I wanted this to be consistent.

Back Side of Jaycee's pain scale cards

-I decided that I would no longer lie to Jaycee about things that would hurt. If things hurt, I would tell her. If things did not hurt, then I would tell her. This way she could trust me and develop some understanding.
-The 0 pain was things that had no or minimal physical contact. This included: chest x-rays, wearing oxygen, getting hair cuts, and clipping nails.
-Getting IVs and blood draws were assigned the highest pain of 5. She absolutely hates these two things.
-On the pain scale 4 and 5, I wrote my verbal cues to her: Be calm. Hold mom's hand.

How I use these:
I always prepare Jaycee before a medical appointment or test by telling her what is going to happen. Now, I give the visual pain scale as an addition cue. I allow her to hold the particular card while she is in the waiting room as a reminder of the pain she can expect to have or not have.

The Result:
I have used these for about a year now at the dentist, before blood draws, and before seeing a doctor. It has not been a magic fix. It has not eliminated all her anxiety and related behaviors, but it is decreasing them. It is working.

If you have a child with comprehension or verbal issues, then I would strongly suggest you give this a try. It may take an hour or so to put it all together but it may be worth your time. With all visuals, consistent use is a key component to its success.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.