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A Parent’s Guide To Blood Draws for Children with Autism


Taking the Work Out of Blood Work:
Helping Your Child With ASD




                                                          A Parent’s Guide




   These materials are the product of on-going activities of the Autism Speaks Autism
 Treatment Network, a funded program of Autism Speaks. It is supported by cooperative
 agreement UA3 MC 11054 through the U.S. Department of Health and Human Services,
   Health Resources and Services Administration, Maternal and Child Health Research
                   Program to the Massachusetts General Hospital.



                                     Page 1 of 21
A Parent’s Guide To Blood Draws for Children with Autism

                                                         Table of Contents
Introduction To Autism Spectrum Disorders ....................................................................................... 3
Tips To Help Your Child Have A Successful Blood Draw ....................................................................... 3
Relaxation And Distraction For Children With ASD ............................................................................. 4
    Why Do Relaxation And Distraction Matter? ............................................................................ 4
    Strategies For Relaxation And Distraction During Blood Draws ............................................... 4
Visual Supports For Children With ASD................................................................................................ 5
    What Are Visual Supports?........................................................................................................ 5
    First-Then Board ........................................................................................................................ 5
    Visual Schedule.......................................................................................................................... 6
Social Stories™ For Children With ASD ................................................................................................ 7
    What Is A Social Story™? ........................................................................................................... 7
    When To Read The Social Story™ .............................................................................................. 7
Reinforcement For Children With ASD ................................................................................................ 7
    Why Does Reinforcement Matter? ........................................................................................... 7
    What If Challenging Behaviors Occur? ...................................................................................... 7
References And Resources ................................................................................................................... 8
Resources On Autism Spectrum Disorders .......................................................................................... 8
Acknowledgements .............................................................................................................................. 8

                                                             APPENDIX
Appendix A: Deep Breathing ................................................................................................................ 9
Appendix B: Make Your Own Pinwheel ............................................................................................. 10
Appendix C: Muscle Relaxing Training Script For Parents To Use With Their Children ..................... 11
Appendix D: Muscle Relaxing Picture Charts ..................................................................................... 13
Appendix E: Ideas For Distraction ...................................................................................................... 14
Appendix F: Visual Supports............................................................................................................... 15
Appendix G: Sample Social Story TM ................................................................................................... 20




                                                                Page 2 of 21
A Parent’s Guide To Blood Draws for Children with Autism

INTRODUCTION TO AUTISM SPECTRUM DISORDERS
     The purpose of this pamphlet is to present ways for you and your child to cope with the stress and worry
     that may come with blood draws. It provides strategies to make these appointments go more smoothly.
     Although completing blood draws with children with ASD is the main focus, the information and techniques
     presented here also apply to other aspects of a clinic visit.
     These may be helpful for individuals of any age or with other conditions. For more detail, examples, and
     printable tools, visit kc.vanderbilt.edu/asdbloodwork/
      What Are Autism Spectrum Disorders (ASD)?
     ASD are a group of developmental disabilities that affect the brain. They make communicating and
     interacting with other people difficult. Because ASD affect people differently, they are referred to as
     “spectrum disorders.” They can range from mild to severe. Not everybody with ASD has the exact same
     symptoms or the same skills. All people with ASD are likely to experience challenges in three main areas:
      Communication. Individuals with ASD may have absent or limited speech. If they have speech, they may
       use it to recite or repeat words. They would have limited ability to use words to convey their wants or
       needs and limited ability to use them in conversation and social interaction.
      Social Interactions. People with ASD usually have trouble with social interactions. They may have
       difficulty understanding social cues, such as tone of voice or facial expressions. They may also have a
       difficult time maintaining eye contact.
      Play and Routines. Individuals with ASD are likely to engage in repetitive behaviors. Routines are also
       important and may play a role in daily activities. Another characteristic of ASD is what some describe as
       “sensory overload.” For these individuals sounds seem louder, lights brighter, or smells stronger.

TIPS TO HELP YOUR CHILD HAVE A SUCCESSFUL BLOOD DRAW

  Before the Visit                          During the Visit
 •    Discuss what will happen using        •   Share your suggestions with medical staff.
      words and pictures that your          •   Remain calm and reassuring. Controlling your expressions and
      child can understand.                     emotions will help your child do the same.
 •    Try to avoid focusing on the          •   Resist the “white lie.” If your child asks, say it may hurt. It is better
      most unpleasant/painful                   to prepare your child than to say it will not hurt if it could hurt. You
      aspects before the visit if it will       could describe a needle for a blood draw as a “strong pinch.”
      make your child more anxious.
                                            •   Explain what is happening in simple, direct language.
 •    Talk with your child’s providers
      before the visit. Ask what they       •   Acknowledge feelings, but avoid long conversations and avoid using
      can do to make the blood draw             words like “scared” or “worried.”
      go more smoothly, such as             •   Help your child see medical staff as helpers.
      requesting a certain time of the
      day, assuring no wait time, or        •   Prioritize what you need to accomplish during the visit. Focus on
      scheduling with someone                   what is most important to complete.
      familiar with ASD.                    •   When possible, provide choices to help your child feel more in
 •    Plan to bring toys or visual              control. For example, let your child pick where to sit, the color of a
      supports that you use every day           bandage, or a reward to follow the visit.
      to help your child remain calm        •   Praise your child’s ability to complete the visit. Praise specific
      and happy.                                compliant behaviors.


                                                     Page 3 of 21
A Parent’s Guide To Blood Draws for Children with Autism

RELAXATION AND DISTRACTION FOR CHILDREN WITH ASD
    Why Do Relaxation And Distraction Matter?                                Tips for Using Relaxation and
   When children with ASD think about going to the doctor, many                Distraction
   become worried about the visit. You can help by teaching your child       Parents may find that typical
   simple relaxation techniques.                                             approaches to using relaxation are not
   Distraction may help by taking your child’s mind off stressful events,    always effective for children with ASD.
   thoughts, or emotions and putting attention on positive thoughts or       Certain changes can be made in order
   activities.                                                               to effectively use these strategies with
                                                                             your child:
    Strategies For Relaxation And Distraction During Blood
     Draws                                                                   •   Practice makes perfect. Try to
                                                                                 teach relaxation strategies at
       •   Deep Breathing.* Teach your child to take a deep breath,              scheduled times in the day instead
           hold the breath for a few seconds and then release it. For            of when your child is already
           young children, using a pinwheel or bubbles to practice can           anxious. Reward your child
           help them focus on their breathing and distract from their            immediately after practicing
           stress.                                                               relaxation. This encourages
       •   Muscle Tensing/Relaxing.* Have your child relax by focusing           continued practice and adds
           on different muscles of the body and alternately tensing and          another positive connection with
           relaxing them one at a time.                                          relaxation. Later when you use
                                                                                 these strategies because your
       •   Visualization. Encourage your child to imagine something              child is worried, he or she will
           pleasant and to visualize that scene with eyes closed.                connect it with something
           Suggest thinking about smells, sounds, and touch of what is           positive. Your child will trust that
           imagined. Using pictures or objects to remind your child of           some- thing good will follow, just
           favorite places or activities can help this strategy be more          as it has during practice sessions.
           successful.
                                                                             •   Prevent instead of react. Try to
       •   Favorite Toys/Activities. Involve your child in distracting           use these strategies before your
           activities before the procedure begins and, if possible, before       child becomes worried, instead of
           your child begins to become upset. Use a favorite toy, a              only using them to calm your child
           particularly engaging topic of conversation, or a game that           down after becoming upset. It is
           does not require movement.                                            best to use these beforehand (for
       •   Music. Play your child’s favorite music or sing a silly song.         example, at home before going to
                                                                                 the doctor’s office, in the car
       •   Laughter. Find ways to make your child laugh.
                                                                                 before going in to the office, in the
                                                                                 waiting room) or when mild signs
                                                                                 of anxiety are noticed.
                                                                             • Use visual supports or concrete
   *If your child has lost consciousness during prior blood draws,               tools. It is important to use visual
  check with your physician before using deep breathing or muscle                supports (for example, pictures) or
                              relaxation.                                        other concrete cues while putting
                                                                                 relaxation strategies in place. Use
                                                                                 them as a quick reminder to your
                                                                                 child that it is time to use these
                                                                                 strategies. This will be more
                                                                                 helpful than trying to explain
                                                                                 through talking.


                                                     Page 4 of 21
A Parent’s Guide To Blood Draws for Children with Autism

VISUAL SUPPORTS FOR CHILDREN WITH ASD
    What Are Visual Supports?
   A visual support refers to using a photograph, drawing, object, or list to communicate with a child who has
   difficulty understanding or using language. Visual supports
                                                                    Why are visual supports important?
   can be especially helpful when your child has to participate
                                                                   The main features of ASD involve challenges in
   in medical procedures such as blood draws.
                                                                   interacting socially, in using language, and
   Two kinds of visual supports that might help your child         having limited interests or repetitive behaviors.
   with ASD more successfully complete blood draws are             Visual supports help in all three areas before,
   First-Then Boards and visual schedules.                         during, and after blood draws or other medical
                                                                   procedures.


    First-Then Board
   A First-Then board is a visual display of something preferred that will happen after completing something
   that is not as preferred. During blood draws, a First-Then board can help motivate your child to take part in
   an activity that is not enjoyable by clarifying a preferred activity that will occur after it is over.


       1) Decide what task you want your child to complete first (what goes in the “First” box) and the
          preferred item or activity (what goes in the “Then” box) that your child can have as soon as the
          “First” task is done. Put a visual on the board for each “First” and “Then” activity. The board can
          refer to the general overall procedure (“First go to the doctor, Then playground”).
       2) The board can also refer to specific steps during the process that can each be paired with
          reinforcement. For example, “First sit in waiting room, Then lollipop.” Next, change the board to
          “First take temperature, Then sticker” and so forth through the blood draw.
       3) Show the board to your child with a very brief statement (“First sit in waiting room, Then
          lollipop”) before starting the “First” task. If needed, refer to the board while your child is doing the
          task (“One more minute, Then lollipop”).
       4) As soon as the “First” task is over, refer back to the board (“All done with the doctor, now the
          playground!”) and immediately provide access to the “Then” activity.




                                                  First-Then Board

              FIRST                     THEN                              FIRST                     THEN
             Feel pinch              Play with cars                     Doctor visit              Playground




                                                      Page 5 of 21
A Parent’s Guide To Blood Draws for Children with Autism

 Visual Schedule
A visual schedule is a display of what is going to happen throughout the day or during an activity. A visual
schedule is helpful during blood draws to decrease anxiety and difficulty with transitions by clearly letting
your child know when certain activities will occur.
1) Decide the activities that you will put on the          3) When it is time for an activity on the
   schedule. Try to mix in preferred activities               schedule to occur, let your child know with a
   with non-preferred ones.                                   brief verbal instruction before the next
                                                              activity begins. When that task is completed,
                                                              tell your child to check the schedule again
2) Put the visuals that stand for the activities              and transition to the next activity. Some
   that you have identified on a portable                     children may respond best when each task
   schedule (on a binder or clipboard) and bring              during the procedure is broken down in a
   it to the visit. The schedule should be                    detailed way. If this makes your child more
   available to your child from the beginning of              anxious, a more general schedule might be
   the first activity. It should continue to be               better.
   visible through all of the activities.

                                                           4) Provide praise and/or other rewards for
                                                              following the schedule and completing the
                                                              activities. Put a preferred activity at the end
                                                              of the schedule to give your child something
                                                              positive to look forward to after completing
                                                              all the items on the schedule.



                                       VISUAL SCHEDULE




                                                 Page 6 of 21
A Parent’s Guide To Blood Draws for Children with Autism

 SOCIAL STORIES™ FOR CHILDREN WITH ASD
      What Is A Social Story™?                                                                 Tips For Writing A Social StoryTM
     Many people with ASD benefit from having a written guide for situations that                • Accurately describe the situation
     may be new, scary, or confusing. A Social Story™ is a helpful way to provide this             in detail. Focus on aspects of the
     guide for blood draws. A Social Story™ helps your child understand the situation              situation your child may find
     and decreases anxiety that comes from entering an unknown situation.                          difficult (for example, meeting
                                                                                                   new people, waiting, lights,
      When To Read The Social Story™                                                              smells).
     If your child needs to know the details about the blood draw ahead of time to               • Focus on important social cues,
     relieve anxiety, then have your child read the story a few days prior to the visit.           events that might occur, reactions
     Use this as a time to briefly answer your child’s questions about the visit.                  that might be expected, and why
                                                                                                   the event is occurring.
     If reading the story ahead of time will make your child more anxious, wait until
     just before the visit (for example, in the car on the way) or when you are at the           • Write from your child’s
     appointment (for example, in the waiting room) to share the story. Have your                  perspective (“I will go to the
     child read the parts of the story that explain what is happening at each particular           doctor. I will…”) or third person
     step during the visit.                                                                        (“Kevin is going to the doctor. He
                                                                                                   will…”).
                       Social Stories™ were created by Carol Gray.                               • Use positive, concrete language.
                   For more information visit www.thegraycenter.org.
                                                                                                 • Do not write in absolutes. For
                                                                                                   example, instead of “The doctor
 REINFORCEMENT FOR CHILDREN WITH ASD                                                               will use cold spray on my arm,”
      Why Does Reinforcement Matter?                                                              write “The doctor may put
                                                                                                   something on my arm to make it
     Because of the difficulties many people with ASD have with communication and                  feel better”.
     social interactions, typical ways of using reinforcement may not work well.
                                                                                                 • Write the story specifically for
     It is important to use specific reinforcers when asking your child with ASD to                your child and his or her
     participate in blood draws, and before the visit to practice strategies, such as              experience with blood draws.
     relaxation, that will help. Doing this will help your child with ASD connect these          • Some children may respond best
     activities with other enjoyable things. This may make the process less stressful              to breaking down each task that
     for your child and will let your child know that his or her hard work will be                 will occur during the procedure
     rewarded.                                                                                     in a detailed way. This may make
      What If Challenging Behaviors Occur?                                                        other children more anxious and,
                                                                                                   for that child, a more general
     Continue to focus on the task and praise the parts of the procedure your child is             story might be better.
     completing. Instead of shifting attention to the challenging behavior, provide
     brief statements or a visual that tell your child what you would like for them to do (for example, “Hold your arm
     out”).
     If you think challenging behaviors may occur, introduce your child to the strategies in this pamphlet before the
     visit and practice them during daily activities he or she enjoys.

 Tips for Using Reinforcement During Blood Draws
• Choose a reward that your child does not always have available and is different enough to be motivating during something
  like a blood draw.
• If your child is undergoing several medical procedures, have a few different rewards so that your child remains motivated
  throughout the entire visit.
• Give reinforcement as soon as you can. If this is not possible, provide some type of visual way to let your child know that the
  reward is coming soon (for example, a picture of the activity, a7 of 21
                                                             Page token).
• Be clear about what the reward is and exactly what your child did to earn it (for example, sat still, walked in without help).
• Always follow-through with providing the reward you promised.
A Parent’s Guide To Blood Draws for Children with Autism

REFERENCES AND RESOURCES                                   RESOURCES ON AUTISM SPECTRUM DISORDERS
   Want more tips for helping prepare your child with                   www.autismspeaks.org
   ASD for doctor’s visits? Below are some links and                    www.autism-society.org
   resources that might be helpful. Also, remember to                   kc.vanderbilt.edu
   visit our website at kc.vanderbilt.edu/asd
   bloodwork/ for more detail, examples, and printable
   tools!                                                  ACKNOWLEDGEMENTS
      Allen, J., & Klein, R. (1996).                           This publication was developed by Leadership Education
      Ready…Set…R.E.L.A.X.: A Research-Based                   in Neurodevelopmental Disabilities (LEND) long-term
      Program of Relaxation, Learning, and Self-               trainees Whitney Loring, Psy.D., Kristen Reeslund, Ph.D.,
                                                               Dwayne Dove, M.D., Ph.D., Michelle Reising, M.S, and
      Esteem for Children. Watertown, WI: Inner
                                                               Melanie McDaniel, B.A., and LEND faculty members Evon
      Coaching.                                                Batey Lee, Ph.D., Associate Professor of Pediatrics,
      Culbert, T., & Kajander, R. (2007). Be the Boss of       Psychology, & Psychiatry at Vanderbilt University and
      Your Pain: Self-Care for Kids. Minneapolis, MN:          Psychological Assessment Coordinator, Vanderbilt
                                                               Kennedy Center, and Cassandra Newsom, Psy.D.,
      Free Spirit.
                                                               Assistant Professor of Pediatrics & Psychiatry at
      Davis, M., Eshelman, E. R., McKay, M., &                 Vanderbilt University and Director of Psychology
      Fanning, P. (2008).The Relaxation & Stress               Education, Vanderbilt Kennedy Center, The Treatment
      Reduction Workbook. Oakland, CA: New                     and Research Institute for Autism Spectrum Disorders.
      Harbiner.                                                It was edited, designed, and produced by Autism Speaks
                                                               Autism Treatment Network / Autism Intervention
      Gray, C. (2010). The New Social Stories Book
                                                               Research Network on Physical Health and the
      (10th ed.). Arlington, TX: Future Horizons.              Dissemination and Graphics staff of the Vanderbilt
      Gillis, J. M., Natof, T. H., Locksin, S. B., &           Kennedy Center for Excellence in Developmental
      Romanczyk, R. G. (2009). Fear of routine physical        Disabilities. We are grateful for review and suggestions by
                                                               many, including by families associated with the Autism
      exams in children with Autism Spectrum
                                                               Speaks Autism Treatment Network site at Children’s
      Disorders. Focus on Autism and Other
                                                               Hospital Los Angeles. This publication may be distributed
      Developmental Disabilities, 24, 156-168.                 as is or, at no cost, may be individualized as an electronic
      Huebner, D., & Matthews, B. (2005). What to Do           file for your production and dissemination, so that it
      When You Worry Too Much: A Kid’s Guide to                includes your organization and its most frequent referrals.
                                                               For revision information, please contact
      Overcoming Anxiety (What to do Guides for
                                                               atn@autismspeaks.org.
      Kids). Washington, DC: Magination Press.
                                                               These materials are the product of on-going activities of
      Thorne, A. (2007). Are you ready to give care to a       the Autism Speaks Autism Treatment Network, a funded
      child with autism? Nursing, 37, 59-61.                   program of Autism Speaks. It is supported by cooperative
                                                               agreement UA3 MC 11054 through the U.S. Department
      www.helpautismnow.com/going_to_the_docto
                                                               of Health and Human Services, Health Resources and
      r.html                                                   Services Administration, Maternal and Child Health
      www.helpautismnow.com/blood_draw.html                    Research Program to the Massachusetts General Hospital.
                                                               Its contents are solely the responsibility of the authors
                                                               and do not necessarily represent the official views of the
                                                               MCHB, HRSA, HHS. Printed June 2011.




                                                      Page 8 of 21
A Parent’s Guide To Blood Draws for Children with Autism

                                             Appendix

APPENDIX A: DEEP BREATHING

     Instructions for Belly Breathing:
         1. Get comfortable. Lie on the floor or sit up straight.
         2. Put one hand on your chest and the other hand over your belly.
         3. Breathe in through your nose, 1…2…3...4. When you breathe in, feel your belly rise like a
             balloon blowing up. Watch your hand on your belly rise, while the hand on your chest stays
             still.
         4. Breathe out slowly through your nose 1…2...3…4. Feel your belly go back in, like a balloon
             deflating.
         5. Keep breathing like this a few more times.
         6. The more you practice…the easier it will become!

     Giving your child a visual—like a picture to go along with belly breathing, blowing bubbles, or
     blowing a pinwheel—will help make practicing deep breathing more enjoyable and easier for your
     child to follow. This can also provide a distraction during stressful doctor’s visits.

     Note: If your child has lost consciousness during prior blood draws, check with your physician
     Blowing Bubbles                                       Pinwheel
            This technique is simple, yet soothing.       Have your child take a deep breath and blow
            Have your child get comfortable (for          out slowly on the pinwheel. See how long your
            example, lean back in a chair). Have          child can make the pinwheel move – the longer
            your child first try blowing bubbles          he or she exhales, the longer the pinwheel will
            using quick, shallow breaths. Watch           spin! Make your own pinwheel using the
            how the bubbles pop immediately.              instructions on the following page.
            Now have your child practice blowing
            the bubbles using slow, deep breaths.
            The slower your child breathes out, the
            more bubbles he or she will make. Have
            your child focus on watching all the
            bubbles fall and repeat the process.




                                                 Page 9 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX B: MAKE YOUR OWN PINWHEEL


   Step 1.   To get started making your own pinwheel, cut a
             4-inch x 4-inch square out of a piece of paper.




   Step 2. Draw diagonal lines across your square to join up
           the corners. Then, mark the center of the square with
           a dot and draw an additional dot at each of the corners.




   Step 3.   Use a pair of scissors to cut along the diagonal lines.
             Then, use a hole punch or punch a hole through each
             of the dots.




   Step 4.   Line the dots on the outer edge of your pinwheel up
             with the dot in the center. Push a tack through the dots
             to hold everything together. Then, push the tack into the
             side of a pencil eraser or straw.


   Your pinwheel is now ready to use!




                                                 Page 10 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX C: MUSCLE RELAXING TRAINING SCRIPT FOR PARENTS TO USE WITH THEIR CHILDREN


     When you feel tense, upset, or nervous, muscles in your body tighten. By practicing tensing certain
     muscles in your body, you will learn to relax them. Now get comfortable!

                                Hands and Arms: Squeeze a Lemon

                                Pretend you have a whole lemon in each hand. Now squeeze it hard. Try
                                to squeeze all the juice out! Feel the tightness in your hand and arm as
                                you squeeze. Squeeze hard! Don’t leave a single drop. (Hold for 10
                                seconds.) Now relax and let the lemon drop from your hand. See how
                                much better your hand and arm feel when they are relaxed.


                                Arms and Shoulders: Stretch Like a Cat

                                Pretend you are a furry, lazy cat and you just woke up from a nap.
                                Stretch your arms out in front of you. Now raise them way up high over
                                your head. Feel the pull in your shoulders. Stretch higher and try to touch
                                the ceiling. (Hold for 10 seconds.) Great! Let them drop very quickly and
                                feel how good it is to be relaxed. It feels good and warm and lazy.


                                Shoulders and Neck: Hide in Your Shell

                                Now pretend you are a turtle. Try to pull your head into your shell. Try to
                                pull your shoulders up to your ears and push your head down into your
                                shoulders. Hold it tight! (Hold for 10 seconds.) Okay, you can come out
                                now. Feel your shoulders relax.


                                Back: Swing up High

                                Pretend you are on a swing at the park. Swing your upper body back and
                                forth, back and forth. To get really high, use your arms to help you swing!
                                Keep swinging! (Hold for 10 seconds.) Great. You’re all done on the
                                swing. Sit back and relax.




                                                 Page 11 of 21
A Parent’s Guide To Blood Draws for Children with Autism

       Stomach: Squeeze through a Fence

       Now pretend that you want to squeeze through a narrow fence. You’ll
       have to make yourself very skinny if you’re going to make it through.
       Suck your stomach in, try to squeeze it against your back bone. Get it real
       small and tight. Hold it as tight as you can! (Hold for 10 seconds.) Okay,
       you’ve made it! You got through the fence. Settle back and let your
       stomach come back out where it belongs.


       Jaw: Chew that Carrot

       Now, pretend that you are trying to eat a giant, hard carrot. It is very
       hard to chew. Bite down on it. As hard as you can. We want to turn that
       carrot into mush! Keep biting. (Hold for 10 seconds.) Good. Now relax.
       You’ve eaten the carrot. Let yourself go as loose as you can.


       Face and Nose: Get That Fly off Your Nose

       Here comes a pesky old fly and he has landed on your nose! Try to get him
       off without using your hands. Wrinkle up your nose. Make as many wrinkles
       in your nose as you can. Scrunch up your nose real hard and hold it just as
       tight as you can. Notice that when you scrunch up your nose, your cheeks
       and your mouth and your forehead and your eyes all help you and they get
       tight too. (Hold for 10 seconds.) Good. You’ve chased him away. Now you
       can just relax and let your whole face go smooth.


        Legs and Feet: Squish your Toes in the Mud

       Now pretend that you are standing barefoot in a big, fat mud puddle.
       Squish your toes down deep into the mud. Try to get your feet down to
       the bottom of the mud puddle. You’ll probably need your legs to help
       you push. Squish your toes down. Push your feet, hard! (Hold for 10
       seconds.) Okay, come back out now. Relax your feet, relax your legs, and
       relax your toes. It feels so good to be relaxed. No tenseness anywhere.
       You feel warm and tingly.




                      Page 12 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX D: MUSCLE RELAXING PICTURE CHARTS




                                             Page 13 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX E: IDEAS FOR DISTRACTION

    Characteristics of Good Distraction Supplies:                    Tips:
          Familiar to child or something you know that they          For medical appointments involving
          like                                                       blood draws, the following distraction
          Something stimulating and novel                            tools may be helpful:

          Portable                                                       Sensory objects to put near the
                                                                         site of the blood draw (for
          Allowed in hospital or clinic rooms                            example, cold pack, vibrating toy)
          Can be used with minimal movement by child (and                Ask your doctor about availability
          with one hand, if possible)                                    of EMLA cream or sprays (which
          Able to sustain child’s attention                              numb pain)
                                                                         Some hospitals or doctors’ offices
                                                                         will have additional, specific tools
                                                                         for blood draws, for example,
                                                                         “Buzzy” (buzzy4shots.com)
    Examples of Good Distraction Supplies:
          Portable device to play videos or music that the child likes
          Games that require little or no movement that the child likes (for example, Paper, Rock,
          Scissors)
          Laughter (for example, a game where you think of different types of laughter and imitate
          what they might sound like)
          Favorite toys or stuffed animals that can sustain their attention
          Toys that are visually stimulating (for example, toys that light up, pin wheels, colorful toys)
          Tactile toys or objects (for example, toys with interesting textures, stress squeeze balls, toys
          that vibrate)
          Novel toys that are visually interesting, make innocuous noise, or are tactile (for example,
          rain sticks, glow sticks, relaxation toys, bubbles)
          Relaxation techniques (for example, deep breathing or progressive muscle relaxation) also
          can be distracting. Just be sure to check with the health care provider that these techniques
          are safe and appropriate to use during your child’s medical procedure.
          Topics of interest to your child. Often children with ASD will have a restricted interest.
          Engaging the child in conversation about this topic can be distracting (for example, trains,
          elevators, or a particular television show or movie).




                                                 Page 14 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX F: VISUAL SUPPORTS
   Here are some pictures you might find helpful to use with your child before and during a blood draw as
   part of their visual schedule or first-then board.




                                                Page 15 of 21
A Parent’s Guide To Blood Draws for Children with Autism




                      Page 16 of 21
A Parent’s Guide To Blood Draws for Children with Autism




                      Page 17 of 21
A Parent’s Guide To Blood Draws for Children with Autism




                      Page 18 of 21
A Parent’s Guide To Blood Draws for Children with Autism




                      Page 19 of 21
A Parent’s Guide To Blood Draws for Children with Autism

APPENDIX G: SAMPLE SOCIAL STORY TM

     For children with lower reading levels, consider using short, descriptive sentences when creating a
     Social Story™.

     An example of a Social Story™: Going to the Doctor

                                                          I am going to the doctor. The doctor keeps me
                                                          safe and helps me when I am sick.




                                                          I may have to wait with my _______ (mom, dad,
                                                          etc). I can play with my ________.




                                                          When I am with the doctor, I will try to listen
                                                          and sit in my chair.




                                                          My mom will be happy if I listen and have nice
                                                          words and hands.




                                                          When the doctor is all done, I get my reward.




                                                Page 20 of 21
A Parent’s Guide To Blood Draws for Children with Autism



An example of a Social Story™ for older children: Getting My Blood Taken

I am going to the doctor. People go to the doctor for lots of reasons. Sometimes, people go to the
doctor when they are not sick. When I get to the doctor’s office, I may have to wait my turn. While I
am waiting, I can __________ (talk to my mom, watch TV, read a book, or think about something
else, etc.). When it is my turn, a nurse may call my name. A nurse is someone who helps the doctor.
I will go with the nurse into another room. This is a safe thing to do and my _________ (mom, dad,
etc.) can come in with me. The nurse may ask me to answer a question and follow her directions.
The nurse will like it if I listen. I will try to follow her directions and stay calm. My __________
(mom, dad, etc.) will be very proud if I listen to the nurse and do what the nurse says.

Sometimes the nurse needs to take some of my blood to make sure I am healthy. I can give some
blood away because I have lots of blood in my body. The nurse may ask me to push up my sleeve
and may put a band around my arm. The nurse may also spray something on my arm or use other
things to make it feel better. The nurse will use a needle to take blood from my arm. The needle
may feel like a pinch. I will try to stay very still while the needle is in my arm. This is the safe thing to
do. While the nurse is doing this, I can _____________ (talk to my mom, look at my book, or think
about something else, etc.). The needle will come out of my arm when the nurse is finished. After
that, the nurse may put a cotton ball and bandage on my arm. When the nurse is finished, I can
have _____________ (reward). My mom and dad will be very proud of me for sitting still and
staying calm!




                                                Page 21 of 21

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Guía extracción de sangre para padres de niños con Autismo

  • 1. A Parent’s Guide To Blood Draws for Children with Autism Taking the Work Out of Blood Work: Helping Your Child With ASD A Parent’s Guide These materials are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Page 1 of 21
  • 2. A Parent’s Guide To Blood Draws for Children with Autism Table of Contents Introduction To Autism Spectrum Disorders ....................................................................................... 3 Tips To Help Your Child Have A Successful Blood Draw ....................................................................... 3 Relaxation And Distraction For Children With ASD ............................................................................. 4  Why Do Relaxation And Distraction Matter? ............................................................................ 4  Strategies For Relaxation And Distraction During Blood Draws ............................................... 4 Visual Supports For Children With ASD................................................................................................ 5  What Are Visual Supports?........................................................................................................ 5  First-Then Board ........................................................................................................................ 5  Visual Schedule.......................................................................................................................... 6 Social Stories™ For Children With ASD ................................................................................................ 7  What Is A Social Story™? ........................................................................................................... 7  When To Read The Social Story™ .............................................................................................. 7 Reinforcement For Children With ASD ................................................................................................ 7  Why Does Reinforcement Matter? ........................................................................................... 7  What If Challenging Behaviors Occur? ...................................................................................... 7 References And Resources ................................................................................................................... 8 Resources On Autism Spectrum Disorders .......................................................................................... 8 Acknowledgements .............................................................................................................................. 8 APPENDIX Appendix A: Deep Breathing ................................................................................................................ 9 Appendix B: Make Your Own Pinwheel ............................................................................................. 10 Appendix C: Muscle Relaxing Training Script For Parents To Use With Their Children ..................... 11 Appendix D: Muscle Relaxing Picture Charts ..................................................................................... 13 Appendix E: Ideas For Distraction ...................................................................................................... 14 Appendix F: Visual Supports............................................................................................................... 15 Appendix G: Sample Social Story TM ................................................................................................... 20 Page 2 of 21
  • 3. A Parent’s Guide To Blood Draws for Children with Autism INTRODUCTION TO AUTISM SPECTRUM DISORDERS The purpose of this pamphlet is to present ways for you and your child to cope with the stress and worry that may come with blood draws. It provides strategies to make these appointments go more smoothly. Although completing blood draws with children with ASD is the main focus, the information and techniques presented here also apply to other aspects of a clinic visit. These may be helpful for individuals of any age or with other conditions. For more detail, examples, and printable tools, visit kc.vanderbilt.edu/asdbloodwork/  What Are Autism Spectrum Disorders (ASD)? ASD are a group of developmental disabilities that affect the brain. They make communicating and interacting with other people difficult. Because ASD affect people differently, they are referred to as “spectrum disorders.” They can range from mild to severe. Not everybody with ASD has the exact same symptoms or the same skills. All people with ASD are likely to experience challenges in three main areas:  Communication. Individuals with ASD may have absent or limited speech. If they have speech, they may use it to recite or repeat words. They would have limited ability to use words to convey their wants or needs and limited ability to use them in conversation and social interaction.  Social Interactions. People with ASD usually have trouble with social interactions. They may have difficulty understanding social cues, such as tone of voice or facial expressions. They may also have a difficult time maintaining eye contact.  Play and Routines. Individuals with ASD are likely to engage in repetitive behaviors. Routines are also important and may play a role in daily activities. Another characteristic of ASD is what some describe as “sensory overload.” For these individuals sounds seem louder, lights brighter, or smells stronger. TIPS TO HELP YOUR CHILD HAVE A SUCCESSFUL BLOOD DRAW  Before the Visit  During the Visit • Discuss what will happen using • Share your suggestions with medical staff. words and pictures that your • Remain calm and reassuring. Controlling your expressions and child can understand. emotions will help your child do the same. • Try to avoid focusing on the • Resist the “white lie.” If your child asks, say it may hurt. It is better most unpleasant/painful to prepare your child than to say it will not hurt if it could hurt. You aspects before the visit if it will could describe a needle for a blood draw as a “strong pinch.” make your child more anxious. • Explain what is happening in simple, direct language. • Talk with your child’s providers before the visit. Ask what they • Acknowledge feelings, but avoid long conversations and avoid using can do to make the blood draw words like “scared” or “worried.” go more smoothly, such as • Help your child see medical staff as helpers. requesting a certain time of the day, assuring no wait time, or • Prioritize what you need to accomplish during the visit. Focus on scheduling with someone what is most important to complete. familiar with ASD. • When possible, provide choices to help your child feel more in • Plan to bring toys or visual control. For example, let your child pick where to sit, the color of a supports that you use every day bandage, or a reward to follow the visit. to help your child remain calm • Praise your child’s ability to complete the visit. Praise specific and happy. compliant behaviors. Page 3 of 21
  • 4. A Parent’s Guide To Blood Draws for Children with Autism RELAXATION AND DISTRACTION FOR CHILDREN WITH ASD  Why Do Relaxation And Distraction Matter?  Tips for Using Relaxation and When children with ASD think about going to the doctor, many Distraction become worried about the visit. You can help by teaching your child Parents may find that typical simple relaxation techniques. approaches to using relaxation are not Distraction may help by taking your child’s mind off stressful events, always effective for children with ASD. thoughts, or emotions and putting attention on positive thoughts or Certain changes can be made in order activities. to effectively use these strategies with your child:  Strategies For Relaxation And Distraction During Blood Draws • Practice makes perfect. Try to teach relaxation strategies at • Deep Breathing.* Teach your child to take a deep breath, scheduled times in the day instead hold the breath for a few seconds and then release it. For of when your child is already young children, using a pinwheel or bubbles to practice can anxious. Reward your child help them focus on their breathing and distract from their immediately after practicing stress. relaxation. This encourages • Muscle Tensing/Relaxing.* Have your child relax by focusing continued practice and adds on different muscles of the body and alternately tensing and another positive connection with relaxing them one at a time. relaxation. Later when you use these strategies because your • Visualization. Encourage your child to imagine something child is worried, he or she will pleasant and to visualize that scene with eyes closed. connect it with something Suggest thinking about smells, sounds, and touch of what is positive. Your child will trust that imagined. Using pictures or objects to remind your child of some- thing good will follow, just favorite places or activities can help this strategy be more as it has during practice sessions. successful. • Prevent instead of react. Try to • Favorite Toys/Activities. Involve your child in distracting use these strategies before your activities before the procedure begins and, if possible, before child becomes worried, instead of your child begins to become upset. Use a favorite toy, a only using them to calm your child particularly engaging topic of conversation, or a game that down after becoming upset. It is does not require movement. best to use these beforehand (for • Music. Play your child’s favorite music or sing a silly song. example, at home before going to the doctor’s office, in the car • Laughter. Find ways to make your child laugh. before going in to the office, in the waiting room) or when mild signs of anxiety are noticed. • Use visual supports or concrete *If your child has lost consciousness during prior blood draws, tools. It is important to use visual check with your physician before using deep breathing or muscle supports (for example, pictures) or relaxation. other concrete cues while putting relaxation strategies in place. Use them as a quick reminder to your child that it is time to use these strategies. This will be more helpful than trying to explain through talking. Page 4 of 21
  • 5. A Parent’s Guide To Blood Draws for Children with Autism VISUAL SUPPORTS FOR CHILDREN WITH ASD  What Are Visual Supports? A visual support refers to using a photograph, drawing, object, or list to communicate with a child who has difficulty understanding or using language. Visual supports  Why are visual supports important? can be especially helpful when your child has to participate The main features of ASD involve challenges in in medical procedures such as blood draws. interacting socially, in using language, and Two kinds of visual supports that might help your child having limited interests or repetitive behaviors. with ASD more successfully complete blood draws are Visual supports help in all three areas before, First-Then Boards and visual schedules. during, and after blood draws or other medical procedures.  First-Then Board A First-Then board is a visual display of something preferred that will happen after completing something that is not as preferred. During blood draws, a First-Then board can help motivate your child to take part in an activity that is not enjoyable by clarifying a preferred activity that will occur after it is over. 1) Decide what task you want your child to complete first (what goes in the “First” box) and the preferred item or activity (what goes in the “Then” box) that your child can have as soon as the “First” task is done. Put a visual on the board for each “First” and “Then” activity. The board can refer to the general overall procedure (“First go to the doctor, Then playground”). 2) The board can also refer to specific steps during the process that can each be paired with reinforcement. For example, “First sit in waiting room, Then lollipop.” Next, change the board to “First take temperature, Then sticker” and so forth through the blood draw. 3) Show the board to your child with a very brief statement (“First sit in waiting room, Then lollipop”) before starting the “First” task. If needed, refer to the board while your child is doing the task (“One more minute, Then lollipop”). 4) As soon as the “First” task is over, refer back to the board (“All done with the doctor, now the playground!”) and immediately provide access to the “Then” activity. First-Then Board FIRST THEN FIRST THEN Feel pinch Play with cars Doctor visit Playground Page 5 of 21
  • 6. A Parent’s Guide To Blood Draws for Children with Autism  Visual Schedule A visual schedule is a display of what is going to happen throughout the day or during an activity. A visual schedule is helpful during blood draws to decrease anxiety and difficulty with transitions by clearly letting your child know when certain activities will occur. 1) Decide the activities that you will put on the 3) When it is time for an activity on the schedule. Try to mix in preferred activities schedule to occur, let your child know with a with non-preferred ones. brief verbal instruction before the next activity begins. When that task is completed, tell your child to check the schedule again 2) Put the visuals that stand for the activities and transition to the next activity. Some that you have identified on a portable children may respond best when each task schedule (on a binder or clipboard) and bring during the procedure is broken down in a it to the visit. The schedule should be detailed way. If this makes your child more available to your child from the beginning of anxious, a more general schedule might be the first activity. It should continue to be better. visible through all of the activities. 4) Provide praise and/or other rewards for following the schedule and completing the activities. Put a preferred activity at the end of the schedule to give your child something positive to look forward to after completing all the items on the schedule. VISUAL SCHEDULE Page 6 of 21
  • 7. A Parent’s Guide To Blood Draws for Children with Autism SOCIAL STORIES™ FOR CHILDREN WITH ASD  What Is A Social Story™? Tips For Writing A Social StoryTM Many people with ASD benefit from having a written guide for situations that • Accurately describe the situation may be new, scary, or confusing. A Social Story™ is a helpful way to provide this in detail. Focus on aspects of the guide for blood draws. A Social Story™ helps your child understand the situation situation your child may find and decreases anxiety that comes from entering an unknown situation. difficult (for example, meeting new people, waiting, lights,  When To Read The Social Story™ smells). If your child needs to know the details about the blood draw ahead of time to • Focus on important social cues, relieve anxiety, then have your child read the story a few days prior to the visit. events that might occur, reactions Use this as a time to briefly answer your child’s questions about the visit. that might be expected, and why the event is occurring. If reading the story ahead of time will make your child more anxious, wait until just before the visit (for example, in the car on the way) or when you are at the • Write from your child’s appointment (for example, in the waiting room) to share the story. Have your perspective (“I will go to the child read the parts of the story that explain what is happening at each particular doctor. I will…”) or third person step during the visit. (“Kevin is going to the doctor. He will…”). Social Stories™ were created by Carol Gray. • Use positive, concrete language. For more information visit www.thegraycenter.org. • Do not write in absolutes. For example, instead of “The doctor REINFORCEMENT FOR CHILDREN WITH ASD will use cold spray on my arm,”  Why Does Reinforcement Matter? write “The doctor may put something on my arm to make it Because of the difficulties many people with ASD have with communication and feel better”. social interactions, typical ways of using reinforcement may not work well. • Write the story specifically for It is important to use specific reinforcers when asking your child with ASD to your child and his or her participate in blood draws, and before the visit to practice strategies, such as experience with blood draws. relaxation, that will help. Doing this will help your child with ASD connect these • Some children may respond best activities with other enjoyable things. This may make the process less stressful to breaking down each task that for your child and will let your child know that his or her hard work will be will occur during the procedure rewarded. in a detailed way. This may make  What If Challenging Behaviors Occur? other children more anxious and, for that child, a more general Continue to focus on the task and praise the parts of the procedure your child is story might be better. completing. Instead of shifting attention to the challenging behavior, provide brief statements or a visual that tell your child what you would like for them to do (for example, “Hold your arm out”). If you think challenging behaviors may occur, introduce your child to the strategies in this pamphlet before the visit and practice them during daily activities he or she enjoys.  Tips for Using Reinforcement During Blood Draws • Choose a reward that your child does not always have available and is different enough to be motivating during something like a blood draw. • If your child is undergoing several medical procedures, have a few different rewards so that your child remains motivated throughout the entire visit. • Give reinforcement as soon as you can. If this is not possible, provide some type of visual way to let your child know that the reward is coming soon (for example, a picture of the activity, a7 of 21 Page token). • Be clear about what the reward is and exactly what your child did to earn it (for example, sat still, walked in without help). • Always follow-through with providing the reward you promised.
  • 8. A Parent’s Guide To Blood Draws for Children with Autism REFERENCES AND RESOURCES RESOURCES ON AUTISM SPECTRUM DISORDERS Want more tips for helping prepare your child with www.autismspeaks.org ASD for doctor’s visits? Below are some links and www.autism-society.org resources that might be helpful. Also, remember to kc.vanderbilt.edu visit our website at kc.vanderbilt.edu/asd bloodwork/ for more detail, examples, and printable tools! ACKNOWLEDGEMENTS Allen, J., & Klein, R. (1996). This publication was developed by Leadership Education Ready…Set…R.E.L.A.X.: A Research-Based in Neurodevelopmental Disabilities (LEND) long-term Program of Relaxation, Learning, and Self- trainees Whitney Loring, Psy.D., Kristen Reeslund, Ph.D., Dwayne Dove, M.D., Ph.D., Michelle Reising, M.S, and Esteem for Children. Watertown, WI: Inner Melanie McDaniel, B.A., and LEND faculty members Evon Coaching. Batey Lee, Ph.D., Associate Professor of Pediatrics, Culbert, T., & Kajander, R. (2007). Be the Boss of Psychology, & Psychiatry at Vanderbilt University and Your Pain: Self-Care for Kids. Minneapolis, MN: Psychological Assessment Coordinator, Vanderbilt Kennedy Center, and Cassandra Newsom, Psy.D., Free Spirit. Assistant Professor of Pediatrics & Psychiatry at Davis, M., Eshelman, E. R., McKay, M., & Vanderbilt University and Director of Psychology Fanning, P. (2008).The Relaxation & Stress Education, Vanderbilt Kennedy Center, The Treatment Reduction Workbook. Oakland, CA: New and Research Institute for Autism Spectrum Disorders. Harbiner. It was edited, designed, and produced by Autism Speaks Autism Treatment Network / Autism Intervention Gray, C. (2010). The New Social Stories Book Research Network on Physical Health and the (10th ed.). Arlington, TX: Future Horizons. Dissemination and Graphics staff of the Vanderbilt Gillis, J. M., Natof, T. H., Locksin, S. B., & Kennedy Center for Excellence in Developmental Romanczyk, R. G. (2009). Fear of routine physical Disabilities. We are grateful for review and suggestions by many, including by families associated with the Autism exams in children with Autism Spectrum Speaks Autism Treatment Network site at Children’s Disorders. Focus on Autism and Other Hospital Los Angeles. This publication may be distributed Developmental Disabilities, 24, 156-168. as is or, at no cost, may be individualized as an electronic Huebner, D., & Matthews, B. (2005). What to Do file for your production and dissemination, so that it When You Worry Too Much: A Kid’s Guide to includes your organization and its most frequent referrals. For revision information, please contact Overcoming Anxiety (What to do Guides for atn@autismspeaks.org. Kids). Washington, DC: Magination Press. These materials are the product of on-going activities of Thorne, A. (2007). Are you ready to give care to a the Autism Speaks Autism Treatment Network, a funded child with autism? Nursing, 37, 59-61. program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department www.helpautismnow.com/going_to_the_docto of Health and Human Services, Health Resources and r.html Services Administration, Maternal and Child Health www.helpautismnow.com/blood_draw.html Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS. Printed June 2011. Page 8 of 21
  • 9. A Parent’s Guide To Blood Draws for Children with Autism Appendix APPENDIX A: DEEP BREATHING Instructions for Belly Breathing: 1. Get comfortable. Lie on the floor or sit up straight. 2. Put one hand on your chest and the other hand over your belly. 3. Breathe in through your nose, 1…2…3...4. When you breathe in, feel your belly rise like a balloon blowing up. Watch your hand on your belly rise, while the hand on your chest stays still. 4. Breathe out slowly through your nose 1…2...3…4. Feel your belly go back in, like a balloon deflating. 5. Keep breathing like this a few more times. 6. The more you practice…the easier it will become! Giving your child a visual—like a picture to go along with belly breathing, blowing bubbles, or blowing a pinwheel—will help make practicing deep breathing more enjoyable and easier for your child to follow. This can also provide a distraction during stressful doctor’s visits. Note: If your child has lost consciousness during prior blood draws, check with your physician Blowing Bubbles Pinwheel This technique is simple, yet soothing. Have your child take a deep breath and blow Have your child get comfortable (for out slowly on the pinwheel. See how long your example, lean back in a chair). Have child can make the pinwheel move – the longer your child first try blowing bubbles he or she exhales, the longer the pinwheel will using quick, shallow breaths. Watch spin! Make your own pinwheel using the how the bubbles pop immediately. instructions on the following page. Now have your child practice blowing the bubbles using slow, deep breaths. The slower your child breathes out, the more bubbles he or she will make. Have your child focus on watching all the bubbles fall and repeat the process. Page 9 of 21
  • 10. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX B: MAKE YOUR OWN PINWHEEL Step 1. To get started making your own pinwheel, cut a 4-inch x 4-inch square out of a piece of paper. Step 2. Draw diagonal lines across your square to join up the corners. Then, mark the center of the square with a dot and draw an additional dot at each of the corners. Step 3. Use a pair of scissors to cut along the diagonal lines. Then, use a hole punch or punch a hole through each of the dots. Step 4. Line the dots on the outer edge of your pinwheel up with the dot in the center. Push a tack through the dots to hold everything together. Then, push the tack into the side of a pencil eraser or straw. Your pinwheel is now ready to use! Page 10 of 21
  • 11. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX C: MUSCLE RELAXING TRAINING SCRIPT FOR PARENTS TO USE WITH THEIR CHILDREN When you feel tense, upset, or nervous, muscles in your body tighten. By practicing tensing certain muscles in your body, you will learn to relax them. Now get comfortable! Hands and Arms: Squeeze a Lemon Pretend you have a whole lemon in each hand. Now squeeze it hard. Try to squeeze all the juice out! Feel the tightness in your hand and arm as you squeeze. Squeeze hard! Don’t leave a single drop. (Hold for 10 seconds.) Now relax and let the lemon drop from your hand. See how much better your hand and arm feel when they are relaxed. Arms and Shoulders: Stretch Like a Cat Pretend you are a furry, lazy cat and you just woke up from a nap. Stretch your arms out in front of you. Now raise them way up high over your head. Feel the pull in your shoulders. Stretch higher and try to touch the ceiling. (Hold for 10 seconds.) Great! Let them drop very quickly and feel how good it is to be relaxed. It feels good and warm and lazy. Shoulders and Neck: Hide in Your Shell Now pretend you are a turtle. Try to pull your head into your shell. Try to pull your shoulders up to your ears and push your head down into your shoulders. Hold it tight! (Hold for 10 seconds.) Okay, you can come out now. Feel your shoulders relax. Back: Swing up High Pretend you are on a swing at the park. Swing your upper body back and forth, back and forth. To get really high, use your arms to help you swing! Keep swinging! (Hold for 10 seconds.) Great. You’re all done on the swing. Sit back and relax. Page 11 of 21
  • 12. A Parent’s Guide To Blood Draws for Children with Autism Stomach: Squeeze through a Fence Now pretend that you want to squeeze through a narrow fence. You’ll have to make yourself very skinny if you’re going to make it through. Suck your stomach in, try to squeeze it against your back bone. Get it real small and tight. Hold it as tight as you can! (Hold for 10 seconds.) Okay, you’ve made it! You got through the fence. Settle back and let your stomach come back out where it belongs. Jaw: Chew that Carrot Now, pretend that you are trying to eat a giant, hard carrot. It is very hard to chew. Bite down on it. As hard as you can. We want to turn that carrot into mush! Keep biting. (Hold for 10 seconds.) Good. Now relax. You’ve eaten the carrot. Let yourself go as loose as you can. Face and Nose: Get That Fly off Your Nose Here comes a pesky old fly and he has landed on your nose! Try to get him off without using your hands. Wrinkle up your nose. Make as many wrinkles in your nose as you can. Scrunch up your nose real hard and hold it just as tight as you can. Notice that when you scrunch up your nose, your cheeks and your mouth and your forehead and your eyes all help you and they get tight too. (Hold for 10 seconds.) Good. You’ve chased him away. Now you can just relax and let your whole face go smooth. Legs and Feet: Squish your Toes in the Mud Now pretend that you are standing barefoot in a big, fat mud puddle. Squish your toes down deep into the mud. Try to get your feet down to the bottom of the mud puddle. You’ll probably need your legs to help you push. Squish your toes down. Push your feet, hard! (Hold for 10 seconds.) Okay, come back out now. Relax your feet, relax your legs, and relax your toes. It feels so good to be relaxed. No tenseness anywhere. You feel warm and tingly. Page 12 of 21
  • 13. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX D: MUSCLE RELAXING PICTURE CHARTS Page 13 of 21
  • 14. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX E: IDEAS FOR DISTRACTION Characteristics of Good Distraction Supplies: Tips: Familiar to child or something you know that they For medical appointments involving like blood draws, the following distraction Something stimulating and novel tools may be helpful: Portable Sensory objects to put near the site of the blood draw (for Allowed in hospital or clinic rooms example, cold pack, vibrating toy) Can be used with minimal movement by child (and Ask your doctor about availability with one hand, if possible) of EMLA cream or sprays (which Able to sustain child’s attention numb pain) Some hospitals or doctors’ offices will have additional, specific tools for blood draws, for example, “Buzzy” (buzzy4shots.com) Examples of Good Distraction Supplies: Portable device to play videos or music that the child likes Games that require little or no movement that the child likes (for example, Paper, Rock, Scissors) Laughter (for example, a game where you think of different types of laughter and imitate what they might sound like) Favorite toys or stuffed animals that can sustain their attention Toys that are visually stimulating (for example, toys that light up, pin wheels, colorful toys) Tactile toys or objects (for example, toys with interesting textures, stress squeeze balls, toys that vibrate) Novel toys that are visually interesting, make innocuous noise, or are tactile (for example, rain sticks, glow sticks, relaxation toys, bubbles) Relaxation techniques (for example, deep breathing or progressive muscle relaxation) also can be distracting. Just be sure to check with the health care provider that these techniques are safe and appropriate to use during your child’s medical procedure. Topics of interest to your child. Often children with ASD will have a restricted interest. Engaging the child in conversation about this topic can be distracting (for example, trains, elevators, or a particular television show or movie). Page 14 of 21
  • 15. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX F: VISUAL SUPPORTS Here are some pictures you might find helpful to use with your child before and during a blood draw as part of their visual schedule or first-then board. Page 15 of 21
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  • 19. A Parent’s Guide To Blood Draws for Children with Autism Page 19 of 21
  • 20. A Parent’s Guide To Blood Draws for Children with Autism APPENDIX G: SAMPLE SOCIAL STORY TM For children with lower reading levels, consider using short, descriptive sentences when creating a Social Story™. An example of a Social Story™: Going to the Doctor I am going to the doctor. The doctor keeps me safe and helps me when I am sick. I may have to wait with my _______ (mom, dad, etc). I can play with my ________. When I am with the doctor, I will try to listen and sit in my chair. My mom will be happy if I listen and have nice words and hands. When the doctor is all done, I get my reward. Page 20 of 21
  • 21. A Parent’s Guide To Blood Draws for Children with Autism An example of a Social Story™ for older children: Getting My Blood Taken I am going to the doctor. People go to the doctor for lots of reasons. Sometimes, people go to the doctor when they are not sick. When I get to the doctor’s office, I may have to wait my turn. While I am waiting, I can __________ (talk to my mom, watch TV, read a book, or think about something else, etc.). When it is my turn, a nurse may call my name. A nurse is someone who helps the doctor. I will go with the nurse into another room. This is a safe thing to do and my _________ (mom, dad, etc.) can come in with me. The nurse may ask me to answer a question and follow her directions. The nurse will like it if I listen. I will try to follow her directions and stay calm. My __________ (mom, dad, etc.) will be very proud if I listen to the nurse and do what the nurse says. Sometimes the nurse needs to take some of my blood to make sure I am healthy. I can give some blood away because I have lots of blood in my body. The nurse may ask me to push up my sleeve and may put a band around my arm. The nurse may also spray something on my arm or use other things to make it feel better. The nurse will use a needle to take blood from my arm. The needle may feel like a pinch. I will try to stay very still while the needle is in my arm. This is the safe thing to do. While the nurse is doing this, I can _____________ (talk to my mom, look at my book, or think about something else, etc.). The needle will come out of my arm when the nurse is finished. After that, the nurse may put a cotton ball and bandage on my arm. When the nurse is finished, I can have _____________ (reward). My mom and dad will be very proud of me for sitting still and staying calm! Page 21 of 21