APPENDICES

The following appendices are available for printing at

http://www.seattlechildrens.org/research/child-

health-behavior-and-development/palermo-

lab/selected-recent-publications/.

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APPENDIX 1

Pain Diary

Name: _____________________

Week of: ___________________

Date Did you have any pain today?

How much did it hurt? (0–10 rating scale)

What time did the pain start?

What time did the pain end (if it ended)?

How diffi cult were your normal activities for you today because of pain? (0–10 rating scale)

APPENDIX 2

Educational Resources for Parents

Th e following books have been helpful for parents of children and adolescents who are experiencing chronic pain condi-tions. Th ey are available for purchase at Amazon.com and are oft en available in book stores as well.

Th e fi rst three books are outstanding guides directed at parents that provide comprehensive coverage of all aspects of chronic pain and chronic pain treatment. Th ere are extensive suggestions for parents about getting appropriate pain treat-ment and the use of relaxation techniques and other skills:

• Conquering Your Child’s Chronic Pain: A Pediatrician’s Guide for Reclaiming a Normal Childhood , by Lonnie K. Zeltzer and Christina Blackett Schlank. Harper Paperbacks, 2005. • Relieve Your Child’s Chronic Pain: A Doctor’s Program for Easing Headaches, Abdominal Pain, Fibromyalgia, Juvenile Rheumatoid Arthritis, and More , by Elliot J. Krane and Deborah Mitchell. Fireside, 2005. • A Child in Pain: How to Help, What to Do , by Leora Kuttner. Hartley & Marks Publishers, 1996.

Th e next set of books is intended for children themselves; each one provides instruction in either one or two specifi c skills or is more comprehensive, as noted:

• Imagine a Rainbow: A Child’s Guide for Soothing Pain , by Brenda Miles, and illustrated by Nicole Wong. Magination Press, 2006.

Intended for the young child with pain, this book uses beautiful illustrations to teach children to use imagery to cope with their discomfort. A “Note to Parents” section explains imagery and deep-breathing techniques and how to help children use them to manage pain.

• Be the Boss of Your Pain: Self-Care for Kids , by Timothy Culbert and Rebecca Kajander. Free Spirit Publishing, 2007.

Th is brief but comprehensive book is intended for the school-age child with pain. It provides an excellent over-view of why pain is experienced, in understandable language for children, and covers a range of self-manage-ment techniques including imagery, acupressure, aromatherapy, etc.

• Help Yourself: A Treatment for Migraine Headaches , by Patrick McGrath, S. June Cunningham, Maureen Lascelles, and Peter Humphreys. University of Ottawa Press, 1990.

Th is is an excellent treatment guide (it includes an audiocassette tape of relaxation instructions) that provides coverage of a range of cognitive and behavioral strategies for the adolescent with migraine headaches. Although this book is out of print, it can sometimes be found through diff erent online distributors.

APPENDIX 3

Basic Abdominal Breathing Instructions

1. Sit comfortably, placing one hand on your chest and one on your abdomen (belly). 2. Breathe in through your nose as much as you can while you count to fi ve, fi lling your abdomen (belly) with air,

then pushing it out. Feel your bottom hand move out. Your top hand on your chest should stay still. You should be able to see your abdomen (belly) moving in and out. (If you’re having trouble seeing your belly moving in and out then lie down, knees bent, and place a book fl at on your belly. See if you can make the book go up and down.)

3. Hold your breath and count to fi ve. Your belly should get round. 4. Now breathe out through your mouth, through puckered lips, letting your belly down while you count to eight. 5. Remember to breathe out slowly until your stomach is fl at. Feel all the muscle tension fl ow out of your body. 6. Repeat slowly, 10 times. Remember to breathe from your belly slowly and calmly. 7. Notice your body beginning to feel more relaxed with each breath out.

APPENDIX 4

Progressive Muscle Relaxation Script

(Suggested ages: 5–9 years with an adult coaching)

Th is is an exercise that will help you relax. It involves tensing your muscles and then relaxing them. We are going to go through your muscles, one by one, to relax them.

Get comfy, relax.

To get started, you should get comfortable by sitting in a chair, or lying down. Close your eyes, and relax. Take nice, deep breaths in . . . and let it out slowly. Take nice, easy breaths . . . not too fast, or too slow . . . whatever is comfortable for you . . . notice that your body is starting to feel relaxed and calm . . . when you breathe out, feel your body become heavy and relaxed. . . .

Hands and Arms

Pretend you have two lemons in your hands and you want to make lemonade. Take your hands and make tight fi sts, like you are going to squeeze the juice out of the lemons. Feel the tightness in your hand and arm as you squeeze. Now drop the lemon and relax. Let’s try it one more time. . . . Okay, now drop the lemon. Notice how your muscles feel when they are relaxed.

Arms and Shoulders

Continue to breathe, but think about your arms. Pretend that you are a furry, lazy cat stretching its arms. Stretch your arms as far as they will go . . . that’s good . . . now relax them. Let’s do that again. . . . Now, notice that your arms feel heavy and relaxed. Let them hang loosely on your lap.

Shoulders and Neck

Now think about your shoulders and your neck. Let’s pretend now that you’re a turtle . . . tuck your head into your shell, just like a turtle . . . good . . . now, take a deep breath and relax your shoulders and neck. Notice how good it feels to have relaxed muscles.

Jaw

Now focus on your jaw muscles . . . bite down as hard as you can, just like you would bite down on a big jawbreaker . . . hold it . . . good, now relax your jaw.

Face and Nose

Now, pretend that there is pesky fl y on your nose, then on your forehead. You have to scrunch your face to get it off . . . hold it . . . good, now relax your whole face.

Stomach

Now think about your stomach . . . pretend that an elephant is about to step on your belly. Th en, make your belly as skinny as you can . . . so skinny you can squeeze through a fence . . . hold it . . . good, now relax your belly.

Legs and Feet

Notice how good it feels to have relaxed muscles . . . now think about your legs and feet. Pretend that you’re on a beach, and you have your toes in the warm sand. Stick your toes deep in the sand . . . as far as they can go . . . good, now relax your toes.

Notice how relaxed your whole body feels aft er all the tightening and relaxing of muscles.

APPENDIX 5

Progressive Muscle Relaxation Script

(Ages 10 and older)

Th is is an exercise called “progressive muscle relaxation.” It involves tensing muscles and muscle groups for about fi ve to seven seconds and then relaxing them for 20 to 30 seconds. We will go through four diff erent major muscle groups: includ-ing hands, forearms, and biceps; then your head, face, throat, and shoulders; then your chest, stomach, and lower back; and last your thighs, calves, and feet. To get started with this exercise, you should be comfortable, either sitting in a chair with your head supported or lying down.

Get yourself as comfortable as you can. You can let your eyes close and just think about paying attention to my voice. As your body becomes comfortable, start thinking about how you are breathing. It is all you should think about — shut everything else out of your mind. If your attention does start to wander, that’s okay, just bring your attention back to my voice. Now take a nice deep breath in . . . and let it out slowly . . . focus all of your energy on thinking about each breath you take . . . let each breath fi ll your chest slowly . . . and let it out slowly . . . good . . . take nice, easy breaths . . . not too fast or too slow, just whatever is comfortable for you. . . . Now begin to notice how with each breath, the body starts to feel relaxed and calm . . . with each breath out, feel your whole body become heavier, more relaxed.

Now as you continue to breathe in and out slowly, pay attention to your left wrist and hand . . . clench your left fi st, making it tighter and tighter . . . tighter . . . hold it . . . now relax. . . . Notice the diff erence between a tight muscle and a loose one . . . notice how good it can feel to have all the tightness out of your hand and to feel a bit heavier, and more relaxed. Now pay attention to your right wrist and hand . . . clench your right fi st, making it tighter and tighter . . . tighter . . . good, hold it . . . now relax and let your fi ngers spread out. . . .

Notice the diff erence between a tight muscle and a loose one . . . feel the tension leave your hands. Now focus on your elbows and tense your biceps . . . pull your arms and fi ngers towards the ceiling, both arms

together . . . tense them as much as you can and notice the feelings of tightness . . . hold it . . . now relax and straighten out both of your arms . . . let them hang loosely on your lap . . . let the relaxation fl ow all the way down your arms towards your fi ngers . . . notice how good this feels to let the tension out of your muscles.

Now focus on your shoulders and shrug them up towards your ears . . . and hold it . . . now take a deep breath and let your shoulders relax and come back down into their natural position . . . and notice the diff erence between tension as your head was hunched up between your shoulders and now the relaxation spreading through your neck, throat, and shoulders. . . . Now shrug your shoulders one more time, all the way up towards your ears . . . keep the tension as you hunch your head down between your shoulders . . . go ahead and hold it . . . now relax and feel the relaxation spreading through your neck, throat, and shoulders . . . enjoy how loose and easy your neck can feel as it balances on your relaxed shoulders.

Now pay attention to the muscles in your forehead . . . and focus on wrinkling your forehead and brow . . . bringing your eyebrows down and curling up your forehead and brow . . . holding it . . . good . . . and now relax, smooth out your forehead . . . let yourself imagine your forehead is smooth, relaxed, and free of tension. . . . Now focus on your head and wrinkle your forehead again as tight as you can . . . hold it . . . and now relax, smooth it . . . let yourself imagine your entire forehead is smooth and relaxed . . . notice the good, calm feeling of having relaxed muscles.

Now close your eyes as tightly as comfortable . . . hold it . . . and now open your eyes and let them stay gently open . . . noticing the relaxation across your forehead and through your eyes. . . . Now focus on your jaw . . . clench your jaw by biting your teeth together hard and notice the tension in your jaw . . . hold it . . . good, now relax . . . really feel the diff erence between tense muscles and relaxed muscles in your jaw . . . . Now press your lips together hard and notice the tension in your face . . . hold it . . . now relax and let your mouth be comfortable and relaxed . . . notice the diff erence as your face becomes more relaxed and loose.

Now put your head back so that you are looking up towards the ceiling, you should feel tension in the muscles in the front of your neck . . . hold it . . . and now relax, put your head back in its normal position and feel the diff erence as your neck muscles become more loose . . . Now put your head forward so that your chin is just about touching your chest . . . hold the position, tensing up the muscles in the back of your neck . . . good. Now relax and put your head back in its upright position and notice your neck muscles becoming more loose and more relaxed.

Now concentrate on your back — arch it slightly, making sure not to strain . . . focus on the tension in your lower back . . . hold it . . . and then relax; focus on letting go of all the tension in the muscles of your lower back . . . notice how loose the muscles in your back can feel. Repeat that one more time . . . concentrate on your back — arch it slightly, focusing on the tension in your lower back . . . hold this position . . . and then relax, let go of all the tension in the muscles of your lower back . . . feeling the looseness, enjoying the feeling of relaxation.

Now take a deep breath and hold it, noticing the feeling of tightness in the chest . . . then release the breath, and notice your chest muscles loosening, becoming more relaxed and more comfortable. Now focus on stomach muscles, make them tight by pulling your stomach inward into a ball . . . hold it . . . and then relax, let your stomach muscles loosen, becoming more comfortable and free of tension.

Now curl your toes downward, making your calves tense, holding that position . . . .and now relax; let your toes come back up and enjoy the feeling of relaxation in your calves . . . notice your leg muscles feel looser and less tense. Now bend your toes upwards towards your face and create tension in your shins . . . hold it . . . now relax, let your toes back down and enjoy the feeling of heaviness and relaxation spreading throughout your legs. Now point your toes again towards your face and create tension in your shins and calves . . . hold it . . . and relax . . . enjoy the feeling of relaxation throughout your legs and calves.

Feel the heaviness in your entire body now . . . enjoy the feeling of relaxation . . . enjoy how good this feels . . . when your whole body feels loose and calm . . . and it feels good to be in control of your body. If there are any muscles in your body that still feel tense, you can concentrate on that muscle group now and focus on relaxing that particular muscle group. When you practice progressive muscle relaxation, you should remember to go through the muscle groups in a sequence where you hold the tension for fi ve to seven seconds and then you relax for at least 20 seconds.

APPENDIX 6

Favorite Pleasant Place

I smell…

I feel…

I taste…

I see…

I hear…

My favorite pleasant place is: __________________

APPENDIX 7

Muscle Relaxation with Imagery Script

(Ages 10 and older)

Lots of people really enjoy a hot tub or a hot bath as a way of getting relaxed. You can practice muscle relaxation by imagin-ing or pretending that you are in a hot tub or a hot bath, and we will use this as an example. If you’d rather imagine a diff er-ent relaxing place later on, go right ahead.

To start, get a good picture in your head of a hot tub or hot bath . . . really clear, like you’re watching it on TV. You can picture yourself sitting on the side of the hot tub getting ready to get in. As you listen to this practice exercise, shut every-thing else out of your mind. If your attention does start to wander, that’s okay, just bring your attention back to my voice.

Now take a nice deep breath in . . . and let it out slowly . . . let each breath fi ll your chest slowly . . . and let it out slowly . . . good . . . take nice, easy breaths . . . not too fast or too slow, just whatever is comfortable for you. . . . Now begin to notice how with each breath, the body starts to feel relaxed and calm . . . with each breath out, feel your whole body become heavier, more relaxed.

As you look at the hot tub, you might like to feel the water fi rst to get yourself used to it. You can sit on the side of the tub, placing the tips of your toes in the warm water, and notice how nice and good it feels. Th en, slowly you can place your entire foot in the water, fi rst your right foot and then your left . Notice how good it can feel to have the warm water circling around your feet.

Th en you can go farther into the tub by stepping in lower so that your calves are now covered with the warm water. Relax . . . enjoy the feeling of relaxation throughout your legs and calves.

You can step in even deeper and focus on the feeling of warmth all over your legs, down your calves, and into your feet. Notice how good the warm water feels on your legs . . . you can enjoy having your legs feel a bit heavier and relaxed. As you sit deeper in the hot tub, the water is now swirling around your stomach and lower back. You can feel the warmth all over your stomach, back, and legs. Relax . . . feeling the looseness, enjoying the feeling of relaxation.

Now you may be ready to place your hands in the water, feeling the warmth of the water and then letting your hands hang loosely on your lap . . . let the relaxation fl ow all the way down your arms towards your fi ngers . . . notice how good this feels, to let the tension out of your muscles.

If you like the feel of water jets, you can imagine that they have come on and are pushing the water toward you in a comfortable way. You may hear the rhythm of the jets as they pulse the water around the tub and help you feel more relaxed.

When you are ready, you can slide farther into the tub, feeling the warm water rise up to your chest and cover your hands and arms . . . enjoy the heaviness in your body and feeling your muscles relax.

Now you may like to feel the warmth of the water circling around your shoulder and neck muscles. Relax and feel the water circle around your neck, throat, and shoulders . . . enjoy how loose and easy your neck can feel in the warm water as it balances on your relaxed shoulders.

You may place your head gently backwards now onto a soft cushion and feel the warm water around the base of your head . . . let yourself imagine the warmth spreading through your entire face. Your face is getting smooth and relaxed . . . notice the good, calm feeling of having relaxed muscles in your face.

Enjoy the feel of the warm water all over your body, relaxing your muscles and creating a sense of calm. Feel the heavi-ness in your entire body now . . . enjoy the feeling of relaxation . . . enjoy how good this feels . . . when your whole body feels loose and calm . . . and it feels good to be in control of your body. Take this feeling of relaxation back with you. Remember how good it felt to be in the hot tub. At any time you can regain this feeling by imagining this place. When you’re ready to fi nish, just move around a bit and stretch, and you might feel relaxed and energized and ready to go back to your regular activity.

APPENDIX 8

Relaxation Practice Tips

1. Relaxation strategies are a set of skills that anyone can develop with practice. Just like basketball or soccer or playing a musical instrument, your ability to do these things increases with regular practice.

2. Find a comfortable place to practice. Do the exercises in a place that is relatively quiet and where you will not be disturbed. If you need to, talk to your parents about how to get alone time when you are not disturbed by brothers, sisters, or pets.

3. Use your favorite, most comfortable chair, couch, or bed to relax on. (Some exercises are easier to learn in certain positions, but do what feels comfortable for you.)

4. When fi rst learning relaxation, do not practice in bed at bedtime because you might fall asleep before fi nishing! (Later on, these techniques might help you fall asleep, so feel free to use them at bedtime aft er you have mastered them.)

5. Keep your legs and arms uncrossed. Th is helps your blood circulate in a healthy way. 6. Find a regular time in your schedule to devote to practice. Remember to practice even when your body is not in

pain. 7. When you practice breathing or relaxation, your mind will oft en wander. When this happens, just notice that you’ve

wandered and bring your mind back to breathing. It will get easier each time you practice.

APPENDIX 9

Relaxation Practice Log and Diary

Name: __________________

Week of: ________________

Date Rate any pain that you had today (0–10 scale)

Which relaxation technique did you use?

How relaxed did you become? (0 = not relaxed, 10 = extremely relaxed)

How helpful was the relaxation technique? (0 = not helpful, 10 = extremely helpful)

APPENDIX 10

Parent Management Guidelines

1. Remove the focus on pain.

Try not to ask your child questions about whether he or she has pain or how much it hurts. Reduce status checks. Let your child bring it up to you. Trust that your child will come to you for assistance if needed (he or she will).

2. Encourage normal activity during pain episodes.

Encourage attendance in school, completion of daily chores and responsibilities, and participation in regular extracurricu-lar activities. Do not remove responsibilities because of pain.

3. Provide different consequences.

Provide diff erent consequences on days when your child’s activities are disrupted because of pain. Th is means that if school or other important responsibilities are missed because of pain, the child should not be permitted to do special things like watch TV, use an iPod or cell phone, or play games (even if pain resolves later in the day). A day with pain and missed activities should be low-key, quiet, and not fi lled with reinforcing activities. Remember the goal is for your child to want to engage in positive “well behaviors” that bring him or her out of the house.

4. Encourage independent management of pain.

If your child reports pain, then encourage the use of a pain management strategy like the relaxation/breathing skills he or she is learning. A good response to a complaint of pain is, “What do you think you can do right now to help your pain?”

5. Do not give excessive attention.

When your child complains of pain, reduce attention such as extra privileges, treats, or extra sympathy. Parents should focus on encouraging positive coping behaviors.

6. Reward activity participation and school attendance.

When your child does attend school or participate in activities, things that he or she enjoys should be made available. Th is may be as simple as getting to use a cell phone or watch TV on the days that she or he goes to school, or may be a more complicated system like gaining points that can be exchanged for agreed-upon rewards.

APPENDIX 11

Point System

Week of: ___/___/_____

Activities to reward:

______________ will receive points for the following activities. S/he is responsible for tracking these on the calendar, and for adding them up at the end of the week. S/he can either cash in the points at the end of the week, or save them for a larger reward. Th is plan should be renegotiated every week, so that activities refl ect the things s/he is currently working towards.

Points can be exchanged as follows. Overfl ow points are not lost (for example, if s/he gets 55 in one week and exchanges 50 for a movie, s/he can keep the 5 for later).

Daily Point Goal: _______ Points

Weekly Point Goal:_______ Points

Activities Points

Points Daily Privileges/Rewards

Points Weekly Privileges/Rewards

I agree to put forth my best eff ort to do the activities that will earn me points. Teen’s Signature: __________________________________________________ We agree to follow the point system to help reward ______________ for reaching the goals. Parent’s/Parents’ Signature: __________________________________________

Points System Calendar

Put a check mark next to each activity you do during the week

Activities Mon Tues Wed Th urs Fri Sat Sun

Totals

Rewards

APPENDIX 12

Privilege System

Week of: ___/___/_____

Activities to reward:

______________ will receive privileges for the following activities. Th is system should be renegotiated every week, so that activities refl ect the things s/he is currently trying to work towards.

I agree to put forth my best eff ort to do the activities that will earn me privileges. Teen’s signature:_________________________________________ I/We agree to follow the privilege system to help reward ______________ for reaching his/her goals. Parent’s/Parents’ signature(s):________________________________________

Activity # 1 Privilege

Activity # 2 Privilege

APPENDIX 13

Tips for Parents to Establish an Effective Reward System

Explain the system to your child or teenager, including the specifi c expectations for the activity. It can be very • helpful to talk about how you want to reward his or her hard work in the pain-management program. Focus on the rewards (rather than the consequences). • Remember that you want your child or teenager to experience success, so make the system fun and rewarding but • also very possible for her or him to do. Consistency is KEY! Th e most common reasons for the failure of reward systems are lack of consistency, and not • sticking to the system.

APPENDIX 14

Tips for Establishing Good Communication Habits

1. One of the most important ways to increase communication with your child or teenager is to listen to him or her .

Let your teen know that you are willing to just listen. 2. Express your feelings and needs directly. Giving a clear message may mean saying, “I worry when you don’t call

aft er school,” instead of, “You never call like you should.” 3. Try not to discuss problems related to your teenager’s pain with other family members in front of him or her.

Children and teens oft en feel like they are burdening their parents, and hearing parents discussing things like frustrations with doctors, health insurance, etc., can be very stressful.

4. Respect your child’s and teenager’s growing independence. Try working with your child or teen to solve problems rather than solving them for her or him.

5. Be accessible. Children oft en blurt things out or want to talk at inconvenient times. Be open to listening any time, anywhere.

6. Use questions sparingly. Resist the urge to know everything your child is thinking or planning. Giving children and teens some privacy and space can help them be more independent.

7. Communicate directly to set limits and expectations. Let your child know what your unbreakable rules are. At the same time, let him or her make an increasing number of minor decisions.

APPENDIX 15

Positive Coping Self Statements Worksheet

What are some things that you could tell yourself to feel calmer when you are feeling anxious or feeling pain?

1. __________________________________________________________ __________________________________

____________________________________________________________________________________________

2. __________________________________________________________ __________________________________

____________________________________________________________________________________________

3. __________________________________________________________ __________________________________

____________________________________________________________________________________________

4. __________________________________________________________ __________________________________

____________________________________________________________________________________________

5. __________________________________________________________ __________________________________

____________________________________________________________________________________________

APPENDIX 16

Thought Record

Date Situation THOUGHTS: What popped into your mind?

FEELING: How did you feel?

WHAT HAPPENED: What did you do?

APPENDIX 17

Thought Continuum Exercise

What beliefs do you have about your pain? How do these beliefs lead you toward or away from the things you want or need to do?

EXAMPLE:

When I havepain

When I don’thave any pain

What is in the middle?

1. I don’t go to school

2. I stay in bed

3. I skip baseball practice

4. I don’t talk to my friends

A littlepain

What could youdo?

1. Go to school for a half day

2. Get homework assignments from a friend

3. Talk to friends by phone

4. Ask my coach if I can practice extra tomorrow

Play videogames with friends

1. I go to baseball practice

2. I go to school all day

3. I spend time with my friends

4. I finish all of my homework

1. Go to school and use relaxation exercises

2. Go to part of baseball practice

3. Do my reading homework

4.

What could youdo?

Moderateamount of

pain

Belief about pain: I can’t do anything when I have pain

What could you do? What could you do?1.

2.

3.

4.

1.

2.

3.

4.

1.

2.

3.

4.

1.

2.

3.

4.

What is in the middle?

Belief about pain:___________________________________________________

APPENDIX 18

Thought-Stopping Instructions

Th ought-stopping is another way to direct attention away from negative thoughts.

1. Write out a negative thought below and think this thought to yourself. ___________________________________________________________________________________________

___________________________________________________________________________________________ 2. Now say “STOP!” in a very loud voice (you might want to warn other people in your house fi rst). It ’ s important

that you say this out loud so that you have a good memory of what your voice sounds like. 3. Each time you have that negative thought, shout “STOP!” Do this a few times. 4. Now try saying “STOP” to yourself in your mind (instead of out loud). Try to imagine your voice like it just was

when you were saying “STOP” out loud. Practice this a few times. 5. Now picture a big red stop sign in your head. Picture every detail, the big white letters the white trim and the exact

shade of red. Now when you have that thought, say “STOP!” to yourself and picture that big red stop sign. Practice this a few times until your thought goes away.

TIP: Some teens put a picture of a stop sign on their notebook or write notes to themselves such as “Stop!” as a reminder to use thought-stopping when they notice negative thoughts during the school day.

APPENDIX 19

Sample School Letter

Address to Key School Personnel — Counselor or Principal Dear ________, I am writing on behalf of your student, [ Insert Child’s Name ] whom we care for at [ Insert clinic or hospital name ]. [ Child’s name ] has [ insert pain condition ]. Unfortunately, [s]he continues to have diffi culties with this condition which causes him/her severe pain, and some problems with walking for long periods. Chronic pain can signifi cantly impact students’ ability to perform many physical activities, including getting around the school campus and participating in physical education requirements. Students with chronic pain can also feel isolated and can benefi t from additional support for coping with this very complex and diffi cult situation.

In order for [ Child’s name ] to be more comfortable at school, we would like to request the following modifi cations to his/her daily activities:

1) Modifi cation to her physical education (PE) requirement . [ Child’s name ] will have diffi culty participating in traditional PE activities that involve running or physical impact with others (such as in team sports like volleyball or basketball). Non-impact activities that involve more moderate levels of exertion will be easier for him/her to participate in. [S]he should also be allowed to take regular breaks as needed should increased pain or muscle weakness occur.

2) Regular check-in with school counselor . It may be helpful for [ Child’s name ] to meet with his/her school counselor on a regular basis this year for additional support and assistance with managing the school environment.

3) Extra set of textbooks . An extra set of textbooks that are kept at home will reduce the burden of carrying heavy loads of textbooks to and from school.

4) Additional transition time in between classes . Permit [ Child’s Name ] to leave fi ve minutes prior to the end of class to avoid congested hallways.

We greatly appreciate your help in making the school environment easier for [ Child’s name ] to manage. We believe that these accommodations will allow [ Child’s name ] to have less pain while at school and will improve his/her well-being.

Th ank you for your consideration in this matter. Please feel free to contact us with any questions, [ give clinic phone number ].

Sincerely,

[ Clinician ]

APPENDIX 20

Sleep Diary

Date: __________ [Complete in the Morning] I went to bed last night at ___:___ a.m. / p.m. I attempted to fall asleep at ___:___ a.m. / p.m. How long did it take you to fall asleep last night? about ___ hours ____minutes Aft er you fell asleep at bedtime, did you wake up last night? Yes___ How many times did you wake up during the night? ____ No___ How long were you awake? ____hours ____minutes I fi nally woke up at: ____:____ a.m. / p.m. I fi nally got out of bed at: ____:____ a.m. / p.m. Please rate your sleep quality for last night.

Extremely poor sleep Extremely good sleep Please rate your mood at the time you woke up.

Extremely negative mood Extremely positive mood

0 1 2 3 4 5 6 7 8 9 10

0 1 2 3 4 5 6 7 8 9 10

APPENDIX 21

Tips for Improving Your Sleep

1. Keep a consistent schedule

Keep a schedule that allows you to wake up and go to bed at about the same time every day (even when it is not a school day). Th is is important because our bodies like regularity. When we go to bed and wake at regular times, our bodies learn to be sleepy at bedtime and alert at the time we want to wake up.

2. No weekend catch-up

Don ’ t try to catch up on sleep on the weekends! If you sleep in late on Saturday and Sunday mornings, it will make it harder for you to fall asleep at the right time and maintain the proper schedule during the week. A general rule is to not vary your wake time on Saturday and Sunday mornings by more than one to two hours from the usual weekday schedule. Th at means if you usually get up at 7:00 a.m. on school days, you need to get up by 9:00 a.m. on weekends.

3. Limit naps

Try to limit naps during the day. If you are really sleepy or don’t feel well, you should keep your nap short (no more than 30 to 45 minutes) in the early aft ernoon. Napping for too long or too late in the aft ernoon will make it harder for you to fall asleep at bedtime.

4. Make healthy routines

Make consistent daytime routines, including eating regular meals and participating in regular activities. Try to get some sunlight in the morning to help keep your “biological clock” in this time zone.

5. Make the bed a sleep-only zone

Use your bed only for sleeping. Find another place to sit to study, read, watch television, or play on the computer. Reserving the bed for sleeping only is a good habit that will promote sleep.

6. Develop a relaxing bedtime routine

Develop a relaxing bedtime routine that you can follow each night. It should involve 20 to 30 minutes of quiet, wind-down activities like reading, looking at a magazine, listening to music, or writing in a journal. If you share a room with a sibling or other family member, talk with this person about your routine so that they can help you and not interfere with your falling asleep.

7. Keep electronics out of the bedroom

Televisions, computers, cell phones, and video games are considered energizing or stimulating activities. Th ese electronic activities can all delay or disrupt sleep and should be kept away from the sleeping area.

8. Schedule eight to nine full hours of sleep

Make a schedule that allows for enough sleep. Most teens need about nine hours of sleep to function at their best, and younger children will need slightly more.

9. Avoid substances that can interfere with sleep

Avoid caff eine for at least several hours before bed, including caff einated sodas, coff ee, tea, and chocolate. Avoid substances containing nicotine because they interfere with falling asleep.

APPENDIX 22

Diffi culty Falling Asleep — Stimulus Control Instructions

1. Your bedtime is ________________ a.m. / p.m. 2. Do not use your bed for anything except sleep; that is, do not read, watch TV, eat, or worry in bed. 3. If you fi nd yourself unable to fall asleep within about 15 minutes, get up and go into another part of the room.

Since we do not want you to watch the clock, just estimate how long you have been lying awake. Remember, the goal is to associate your bed with falling asleep quickly ! If you are in bed more than about 15 minutes without falling asleep and have not gotten up, you are not following this instruction. Return to bed intending to go to sleep only when you are very sleepy.

4. While out of bed during the night, you can engage in quiet but boring activities like reading, organizing your desk, etc. Do not exercise, or take warm showers or baths. Do not lie down or fall asleep when not in bed. Do not have a TV in your room.

5. If you do return to bed and still cannot fall asleep within 15 minutes, repeat Step 3. Do this as oft en as is necessary throughout the night.

6. Set your alarm and get up at the same time every morning no matter how much sleep you got during the night. Th is will help your body acquire a consistent sleep rhythm. Your wake time is _________________ a.m.

7. Do not nap during the day.

APPENDIX 23

Instructions for Activity Pacing

What is Activity Pacing?

You may have found that pain prevents you from participating as much as you want to in valued activities. You may be having a hard time reaching certain goals that you set for yourself. One strategy to increase your participation in important activities is called pacing .

Time is the key to good pacing

Here ’ s an example of how to use time in order to pace an activity. Let ’ s say that a person knows that she can stand in band class for 15 minutes before pain worsens. She can set the activity of standing in class for 15 minutes at a time. Stand for 15 minutes. . . . Rest for 5 minutes. . . . Th en stand for another 15 minutes. Th is is how TIME would be used to pace an activity.

Steps

1. Select any activity you wish to pace. Estimate how long you can do the activity without worsening your pain. In other words, fi gure out the amount of time you can be active before you start to feel worse.

2. Estimate a rest time period or how long you need to rest from the short period of activity. Tip: Relaxation strategies can be helpful to do during the rest time.

3. Th en you alternate the two time periods: activity time . . . rest time. . . activity time.

You can increase your activity time gradually. For example, if aft er two or three days your pain doesn ’ t worsen, increase the activity time by a few minutes (and try to keep the rest time the same). You can keep increasing this activity time every two to three days, as long as pain doesn ’ t worsen.

APPENDIX 24

Pleasant Activities Chart

From the list below, choose three pleasant activities that you want to focus on this week. Th en, put a check next to the day(s) of the week that you have done each activity. You may also choose your own activity and add it to your chart.

My Three Pleasant Activities:

1. _________________ 2. ________________ 3. _________________

Week of ___/___/_____

Doing a hobby Going to the movies Reading

Dancing Listening to or playing music Playing with pets

Cooking or baking Making craft s Exercise/sports

Taking a bath Walking indoors/outdoors Library/bookstore

Going shopping or window shopping Playing games/cards Making a pleasant phone call

Drawing/painting Going to church Singing

MONDAY

TUESDAY

WEDNESDAY

THURSDAY

FRIDAY

SATURDAY

SUNDAY