Before you communicate with your child about the procedure, you need to prepare yourself. Children can sense anxiety and worry. If you are worried, they'll pick up on that easily and in turn become worried themselves. It's important for you to become educated about your child's condition and the procedure so that you are comfortable talking about it and giving them honest answers to their questions. It's important for you to be knowledgeable and open with your child so that they develop trust. It's best not to have unexpected surprises or to give them false information about what will happen. This can create fearful or negative experiences.
Resource: Taking the work out of blood work
Prepare your child with play
Role play can be an ideal way to explain what will happen to children in terms they can understand. I used a social story made by the Cleveland Children's hospital to direct my daughter's play. You can print the pdf and let your child color on it if they'd like. Katie has never been interested in coloring so we used it as a story and went through all the procedures with a stuffed animal of her choice. We acted out each step with a toy doctors kit and Katie played doctor. After I read each page, she'd act it out by asking her animal questions and explaining what would happen. It helped her understand what she'd experience when undergoing surgery. We even made a pulse ox monitor, IV and wrapped her kitty with gauze and duct tape to simulate the casts that Katie was going to get. We signed Kitty's casts and took her to the hospital with us. The nurse there gave her Kitty a hospital bracelet to match Kate's. No matter what procedure you are preparing for, there are many social stories on the internet that you can find and use. Role play is a wonderful way to prepare your child for the procedure they'll undergo.
Resource: My going to surgery book
Read books that show a happy ending
Since Katie was getting casts on her legs, I found a couple books with related stories. One was a Doc McStuffins book about a toy that hurt her leg and needed a cast. When the cast came off she could dance again. Katie responded very well to this- even asking the day following surgery if she can take the cast off so she can dance :) However you chose to explain the procedure, be sure they understand WHY they are doing this. Knowing the surgery will help them walk or the heart doctor will make sure they have energy to run and play will give your child a tangible reason why they should tolerate the procedure.
Here is a list of books suitable for preparing your child for hospital visits. There are often resource libraries at your local hospital that you can use to check out books on these topics. The family resource center at St. Louis Children's Hospital is staffed with nurses that can help you find resources for both parents and children to help you prepare and become more educated on your child's condition.
Search for social stories videos and apps
Youtube has many videos of procedures that are made for kids to see what they can expect. Preview these videos to make sure the content is appropriate! There are also many apps for apple and android that allow you to build your own stories. You can take pictures of the hospital during a visit of the tests or tools that instill anxiety and help your child view them so they become comfortable with the environment. This is a great way to help them ask questions and slowly become acclimated to the objects that are their source of anxiety. It can be especially helpful if your child has a procedure that they have to do often and don't tolerate. For example, if they don't tolerate the echocardiogram, take pictures when you go of the room, equipment, doctors and nurses and let them look at them often. It'll help make them more comfortable in the long run.
Apps that are helpful to children with special needs
Prepare your child for painful procedures
Don't tell your child that a procedure won't hurt if it will. You can acquaint them with the pain scale so they can better communicate their feelings. If they are getting blood drawn or an IV, you should explain that it'll feel a pinch and then the pain will go away. I counted with Katie during these procedures and told her that she'll feel better when we count to 20. This helps. If your child has anxiety over procedures like blood pressure measurements, use visual cues to help them control their anxiety. Katie went through a phase where the blood pressure cuff would put her in a panic. I told her to be brave and calm and showed her the gauge on the blood pressure cuff so she can see the needle sink. I told her she was getting a tight hug on her arm and then we could watch the needle go down and when it got to the bottom she'd be finished and could cry if she wanted to. It worked! She stayed quiet during the reading and then cried when it was finished but after a few times doing this, she tolerates the screening.
Take a tour of the hospital
If you live close enough, visiting the hospital and doctors that are involved can help alleviate anxiety of being in a new and unfamiliar place. Especially if your child is undergoing anesthesia, a pre-surgical visit will be important to reduce risks and help your child become acquainted with the location. Some hospitals even have pictures and virtual tours you can access on their website.
Access the Child Life Services
Most hospitals have Child life coaches who are trained to help explain to children what will happen in their own terms. They have games, sample tools and distraction materials you can use before, during and after procedures. They are important resources for parents, too! They are trained to answer questions in easy terms and to relieve anxiety for families.
Bring a comfort item
Whether is a tablet to watch a favorite show or a stuffed animal to snuggle with, your child will feel better having items that comfort them and are familiar from home. If your child is anything like mine it's a ukulele or a drum :)
Listen and Watch your child
Many of our kids have trouble expressing their thoughts and feelings so be their advocate. Watch for signs of pain or fear and using a calming voice and touch to help relieve their anxiety and fears. Katie was abnormally withdrawn and quiet during her hospital visit. She was quiet but based on her behaviors I knew when she was frightened or hurting. I'd give her an opportunity to speak for herself but eventually would translate her nonverbal cues for the nurses and doctors. You know your child better than anyone so it's important to be with them the entire time and speak for them when they can't speak for themselves. If your child is older, you can coach them to speak for themselves. Many of the special needs high school students I work with have trouble with this. It makes a great IEP goal that can benefit them for a lifetime.
No matter what you are facing, building a community of support will always make it easier. If you keep the procedures a secret you are putting a lot of pressure on yourself to carry the weight. I have found that throughout my experiences with Katie, the more I share with others, the more my community surprises me with encouragement and help. If sharing makes you uncomfortable, start small with your partner, trusted friends and family. I have found that talking to my child's teachers and therapists have been very beneficial. They are often experts in these situations and a source of great advice, encouragement and resources. They also spend a lot of time with your child so they can watch for signs of anxiety and help them in times of need. Another wonderful resource are the facebook support groups. Finding a closed group gives you opportunity to voice concerns, ask for prayers or encouragement and talk to people who are wearing your shoes. As the years have gone by I'm more and more open with our experiences and find that sharing provides me with people resources, professional resources and a phone filled with encouraging messages. Whatever level of support you seek, don't enter a stressful situation alone. It's very liberating to ask for help and gratefully take on the support.
WS support page- affiliated with the Williams Syndrome Association
Williams syndrome Hope support group
WS Moms in prayer
Other sources that helped me prepare for medical procedures:
Friendship circle blog for special needs parents
Child life specialists
Child life specialist services at St. Louis Children's Hospital
Treating fears and phobias by Dr. Pober the Replay approach to alleviating anxiety during medical exams.
If you have any other approaches to help your child understand their medical procedure, feel free to share below in the comments!