Getting Kids in Pain to School: Tips From the Trenches
School helps kids in pain. But how do you get them there?
Posted Dec 01, 2015
My youngest son lives with severe, frequent pain. He has chronic migraines. In the last 35 days, he's been pain free for five of them. This morning he would squeal with the sound of a toilet flushing in another room, shudder when the light hit his face, and lie shaking at the prospect of just sitting up in bed.
Think of an ice cream headache that lasts for four days. Then starts again.
I have written before about children who to go school in pain. Chronic pain is counter-intuitive. First of all, it seems impossible that anyone could live in that much pain all the time. Second, it seems implausible that people who are in a lot of pain can look normal, act as if they're okay, or laugh and talk with friends. They can, it just takes a lot of practice and uses a lot of energy.
Neuropathic pain is dysfunctional in that the pain itself is the disease. The nerves start firing and don't stop. Curing the disease requires quieting and retraining the nerves. The most recommended way to do that is to return to functioning. That means getting up and living your life. This does not mean 'pushing through' your pain. I hate that phrase. It implies that if you just try hard enough, the pain will go away. It doesn't - at least not short term. I prefer to think about it the way they talk about it at the Cleveland Clinic Pediatric Pain Rehab program:
- You are in a lot of pain. That pain isn't going away right now. You can curl up on the couch and embrace it. Or you can take it with you and try to live your life.
Why Should Kids In Pain Go To School?
For kids, that means going to school in pain. Research suggests that compared to kids who withdraw and are home schooled, kids who go back to school despite chronic pain reduce the number of days they experience pain and reduce their experienced pain. They also become less chronically ill from other diseases. Lying in bed for weeks, months, and years because it hurts too much to get up makes you physically weak. And weak bodies are prone to disease. It makes you depressed. And depression reduces your immune system's ability to keep you well. And it means the child is not doing the other important tasks that kids need to do: play, learn, and be with others.
PLEASE NOTE: If your child is anxious as well as in pain, you are facing a much more difficult situation and want to work even more closely with a therapist who is skilled in dealing with these issues. The techniques described here and the links below will be helpful, but may have to be modified for your special circumstances. All kids are different. That said . . . .
People in pain need help. I think of functioning with pain as physical therapy for the brain. And physical therapy is often painful. As I have written before, if your child has this type of pain, they need help dealing with it. Stress reduction techniques, breathing techniques, and biofeedback can help reduce the experience of pain and help you to cope with it. A good pain therapist will also help you develop a concrete set of plans to put in place to deal with upcoming pain, coping with active pain, and dealing with the aftermath of your limited functionality during pain. And they can help with the frequent handmaidens of pain: depression and anxiety.
How To Get Them Out The Door?
When his doctors first told my son had to go to school in pain, I (1) didn't believe they could possibly be serious and (2) had no idea how to do it. They were. I now have too much experience. PLEASE SHARE YOUR OWN TIPS IN COMMENTS.
One of the things I have learned through this experience is that it is very helpful to talk to other people who are going through the same thing. They provide support. They also know, collectively, a lot. Find a group. There are many on Facebook. There are more of us around than you think.
Tips for your child:
- Set an expectation that they are going. You don't want to start every morning with an evaluation of whether they are bad enough to stay home. They are not contagious. Staying home will not help them heal. Having an argument makes everyone more tense and tension makes pain worse. You both need to agree to this plan and commit to it.
- Everyone has to be on board. Sending a kid in pain to school is incredibly wrenching. It goes against every one of my protective mom instincts. I can't tell you how many times I have done this with tears running down my face. You need the support of all family members. I am truly blessed in that my husband and I work together on this. I get my son to the door. He drives him to school and gets him in the door. Many people aren't that lucky. If you have a partner and they are undermining efforts to help your child function and heal—or worse, if they say the disease isn't real—this may be a time when family counseling is appropriate. At the minimum, they need to agree to get out of the way.
- The foot in the door technique. I wrote a full essay about this technique. The 'foot in the door' is a well established social psychology principle that if you say 'yes' to one thing, you are more likely to say 'yes' to the next request. So I don't start off a bad morning saying, 'get ready for school'. Some days that's too much. Instead, I start off saying 'can you sit up?' Then I ask him to go to the bathroom. Then put on shirt and pants. Then finally, we're going to the car. One step at a time, he gets into the car and into the school.
- This is a technique he uses on himself, by the way, to get through the day once he's at school. At 10AM in overwhelming pain, the idea of staying to 3:30 seems impossible. But getting to lunch to see his friends? Making it to study hall so he can rest? Just getting through Spanish? And by then there's only an hour left so he might as well finish. And then there's a fun extracurricular —and if he forced himself to stay to work, he might as well stay for fun. One step at a time can take you a thousand miles.
- The door in the face technique. This is the opposite technique. You make a huge request—get dressed and get out the door. They balk. Back off. Can you get dressed? They may say yes.
- Start early. Pain hurts and they need time to gird their loins, get their defenses up, and get ready to jump into the fray. An earlier wakeup time helps. Don't rush. Things are stressful enough already.
- Remind them to use their skills. Hopefully, they have skills they can use to cope with pain. They are similar to ones used in childbirth education classes.
- BREATHE. Slow regular cleansing breaths help.
- VISUALIZATION. Imagine yourself on a beach listening to waves. Every wave washes across you gently, leaving you a little more relaxed.
- COUNTING. Focusing your mind on anything but the pain helps. Count tiles on the floor. How many red things are there in the room? What is 5 x 7? Using your brain gives it something to do that isn't suffering.
- RELAXATION. Consciously relax each muscle from the feet to the jaws and top of the head. Pain makes you tense. Tension increases pain. Consciously overcome it.
- SELF HYPNOSIS. Using self-hypnosis or biofeedback techniques are invaluable for removing yourself from the pain and relaxing. If you don't know how, find a clinician or practitioner to teach you.
- ONLINE BREATHING EXERCISES are available here.
- Mindfulness. The only good thing about being hypersensitized to sensation is that it can make good sensations better too. Help them focus all their attention on that delicious orange they're biting into or the softness of their fleece jacket.
- Hold them. They are never too old to be held. When I hug my very tense son I can feel his muscles relaxing. That's what he needs.
- Ready, then relax. One of my newer insights is to change the order we do things in the morning. I used to have my son do his relaxation techniques. Then he'd get dressed, pack his backpack, then get out the door. On bad pain days, that made for a hectic morning and lost all the relaxation he needed to start his difficult day. Now, we get him fed and dressed first. Even shoes and (today) his coat. At that point he did his relaxation techniques. When it was time to hit the door, all he had to do was to come up from is 'trance' and walk to the car. Much less stress.
You need to breathe too
Helping a child do this is painful and difficult. You need to relax too. I do all those relaxation techniques with my child.
- Talk softly, but firmly. I always think of really good triage nurses. When your child is in pain, all they hear is your voice. It's their lifeline. Keep it steady.
- Keep moving in a positive direction.
- It's okay to get frustrated. But continue to recognize their pain and that it's not their fault. We're all frustrated with the pain. They're rather not do this either.
Use Rewards. Kids Respond to Pleasure, Not Punishment.
The neuroscience of children and adolescent development is fascinating. One of the things that we've learned recently is that kids don't respond to threats—especially threats about negative consequences in the future. They're brains literally don't respond.
Concretely, that means praising every single movement in the right direction, no matter how small. Each time they do something hard and are rewarded or acknowledged, it builds their sense of efficacy and their confidence that they can do more. Telling them that if they don't go to school they won't go to college is much less compelling than saying 'good' when they get up the energy to put their tee-shirt on.
No Easy Answers.
Some kids have complex problems and going to full day school is impossible for them. Some can make it for partial days. Some do homeschooling. But functioning is important.
Some days you try. Some days you make it. Some days you don't. But you keep moving forward.
Some days you run out of energy (spoons) and need to regroup.
But calm persistence and a bag of techniques can help them move in the right direction.
Got a technique that helps your child? Please post it in comments.
Two excellent books on parenting children in chronic pain:
- Conquering Your Child's Chronic Pain by Zeltzner and Schlank is an excellent introduction to how pain works and techniques for coping with it. We haven't conquered it yet (I hate that title) but it has helped me tremendously. My son has also read it and found it very useful.
- Managing Your Child's Chronic Pain by Palermo and Law is another excellent book. It is more of a workshop approach and is aimed at parents who don't have access to a pain clinic. They include a lot of 'how to' techniques on relaxation. They have deep breathing exercises here.
- What NOT To Say To A Person Who Is Suffering
- Kids in Pain Part I: Chronic v. Acute Pain
- Kids Who Go To School In Pain
- Withdrawn Irritable Kid? Is It A Migraine?
- Getting Kids To Do Things: The Foot In The Door (how to help kids in pain get back to their lives)
- Disability? In College? Advice on Talking To Your Professors (If you are in this situation, I urge you to read the comments section as well, which has many thoughts from students.)