Giving children the opportunity to process information is an important step in reducing confusion and anxiety about new changes. This resource aims to empower parents and caregivers with age-appropriate information and tools to guide discussions with children after an FOP diagnosis. Helping your child understand what FOP is and how it may impact their life equips families with a solid foundation to navigate FOP progression and the life-shifting changes it may impose.

A Few Things to Keep in Mind When Using These Scripts

  • It’s important to build and maintain trust with your children by staying as honest and transparent as possible. If you don’t know the answer to a question, it’s ok to tell them, “I don’t know,” and, “We’ll have to ask someone how that works.”
  • Only you know your child’s coping style and can determine how much information will be helpful for them. To learn more about the different coping styles and how to best support your child, visit ifopa.org/coping_styles
  • Invite all emotions that your child may be experiencing and don’t be afraid to show your own emotions as the leader of the conversation. Remember, emotions don’t define the person and having the ability to express them is critical to allowing the person to move on from them.
  • Consider the time of day and the basic needs of your child (tiredness levels, hunger, etc.) before initiating this conversation. Find a setting and space that is comfortable and enjoyable for them. Sit-down conversations can be difficult for younger children so discussing while enjoying another activity like coloring or building with blocks can be conducive to communication.
  • Remember, this conversation can be done in stages, starting with basic information and concerns from the child.
  • The most important part about this conversation may not necessarily be what you say, but rather, how you say it. Using a calm, caring voice and building connection through touch and two-way communication are key to making this conversation a nurturing experience for your child(ren.)

Age-specific Information to Inform Your Discussion

Children under the age of 3: At this age children are typically too young to understand the specifics of a medical diagnosis but can sense changes in a parent’s behavior and actions. You can begin to explain FOP using words that are already in their vocabulary such as sick, boo-boo or owie. If using those words, make sure to differentiate how this sickness, boo-boo, owie, ect. is different from a typical cold, cut or scrape.

When talking about FOP, pointing or touching different parts of the body that have been affected can help the child make connections.

A child’s actions and self-talk during imaginary play can be a helpful way to begin gauging their understanding of a situation. Providing access to dolls and play items that help simulate what they or their sibling with FOP is experiencing can provide a helpful outlet for younger children to be able to recreate their thoughts in play. During play they can begin to process how they are feeling about difficult situations that they don’t yet have the skills to verbally express.

Between the ages of 3 and 7: At this age, having basic conversations about FOP and how it is impacting their life can be helpful. This is a good time to introduce the name FOP and begin talking about concrete ways that it may create changes in their daily life and activities. At this age, a child’s thinking may still be driven by fantasy, make-believe and imaginative play. Their assumptions about how they (or their siblings) got FOP and how FOP works could have the greatest room for clarification.

  • Simple, reassuring explanations with emphasis on what information they can process using their senses (what will they see, feel, hear) is most helpful. Information should be as concrete as possible with demonstrations such as props, models or pictures that they can handle and manipulate (again focusing on the senses).
  • If the child plays with dolls or Barbies, the thoughts they express through imaginary play can be very telling as to what misconceptions they may have. It can also be a helpful way for you to share information as well.
  • Medical play and continued exposure to books and activities that help them understand their body are key

Between the ages of 8 and 12: In this stage, a child’s logical reasoning plays a bigger role in how they make sense of new information, which likely reduces misconceptions. They are also better equipped to verbally tell you what they know as opposed to needing to express their emotions or thoughts through play. Children are often becoming increasingly aware of their external environment at this age which can lead to more sensitivity to the changes taking place as a result of FOP. Incorporating tools and strategies to maintain normalcy when possible can be an effective coping strategy. You may also want to proactively plan for options to help them manage pain and begin introducing medical terminology and advocacy skills.

Continued opportunities to learn more about how FOP works through reading, sensory exploration and interacting with other children who have FOP are key.

The transition to a child with FOP managing care him or herself typically begins between the ages of 12 and 14 so that a child has many opportunities to gradually become involved as a leader in their healthcare before they turn 18.

Learn more at ifopa.org/transitioning_to_an_adult_health_care_provider

Teenagers: Teenagers are not only able to reason and use logic to make sense of their world,but they’re also able to understand more abstract concepts and consider future possibilities of how FOP may impact their life as an adult. During these teenage years, youth are also working to create a more independent and individual identity outside of their immediate family. Teens may be anxious to know how FOP can impact other areas of their life. Emphasizing opportunities for continued normalcy and adaptations to promote independence is key. Teens may be interested in learning more about their diagnosis, so offer them plenty of opportunities to ask questions (whether to you, their doctor or a trusted friend). Allow them to hear diagnosis and treatment information directly from the care team as much as possible.

Here are a few suggested prompts:

  • “Doctors have a few different options they use to help manage the symptoms you experience during a flare-up and try to stop new bones from growing. We can ask him/her to explain those and talk about which options may work best for you.”
  • “During flare-ups, the symptoms might make it difficult for you to be at school or stay involved in activities, but we can communicate this to your teachers and create a plan to help you stay involved”

If children feel anxious about explaining FOP to their friends, it can be helpful to prepare a sentence or two that they can recite to educate their friends about FOP. Practice saying it at home to build confidence.

Prompts for Starting Your Conversation

  • Open up the discussion by giving the child the opportunity to tell you what they know about FOP, offering them a prompt to share what they may be thinking or feeling. This also gives you a chance to pick up on any misconceptions they might already have about FOP (how it works, how it can affect them or their siblings, etc.).
  • (For siblings) It’s important to clarify that they are not going to “get” FOP. FOP is not contagious like a virus or a cold. You cannot catch FOP from another person. FOP is something that their sibling was born with. For younger children, you could point out that their sibling’s malformed two big toes are a sign of FOP. The child does not have the malformed big toes, and that is just one way we know they do not have FOP.
    • You might want to save this next part for a later date so your chat isn’t too long, but, with older children, you can explain that FOP is a genetic disease. That means that their (or their sibling with FOP’s) genes are what causes FOP. Genes are like the instructions that tell our body how it should work. The book The One and Only Me, written by Ariana Killoran, can be a helpful resource in explaining this concept.
  • This may not seem applicable for everyone, but younger children can sometimes believe they caused the disease in themselves or in their sibling. Clarifying that it was not something they did or said that caused them (or their sibling) to get FOP is important.
  • FOP may not always make the person with FOP sick. There will be other times when FOP is not bothering him/her as much as it is now. Even when FOP is not making the person with FOP sick, it will still be a part of them. They will have FOP until the doctors and researchers find a medicine to cure it. Right now, there is no medicine that stops FOP completely. The medicine that is available can slow it down but cannot undo the new bones that have grown.
    • If the person with FOP was diagnosed later in life, you can point out how we didn’t know they had FOP for a while because it doesn’t always make them sick.
    • I use the word sick to describe FOP, but you don’t need to say sick if you would rather use another word to help identify a flare-up like sore, sensitive to touch or swollen.
  • When FOP does make someone sick, it is changing the way their body works. Our bodies move using muscles and bones. The bones are like the strong support beams that hold our body up and help shape us. Without bones, we’d look like a bowl of jelly! Our bones are hard, which means they don’t bend. The muscles are what pulls on the bones and makes them move. Our muscles are soft and bendable that is what allows them to move.
    • Try asking, “Can you show me a bone that moves and find the muscle that helps it move?”
    • Any kind of visual you can provide to help provide clarity on this is helpful. Puzzles are great because children can explore and learn at their own pace, but there are lots of videos, books or graphics you can find online that would also be helpful to include those in your conversations.
    • When FOP is making someone sick, it will sometimes cause the muscles in their body to swell. A lot of people call this a flare or flare-up. Flare-ups happen when a muscle gets hurt and their body sends extra fluid to the muscle to help it heal. All that extra fluid makes the muscle look bigger than normal, which can be painful.
    • Sometimes, when muscles swell, they can turn into bone. That means that the part of their body that is supposed to help with movement (the muscle) turns from something that is soft and flexible into hard bone. When the new bone grows, the bones that were there before cannot move as easily.
      • For younger children, you can reiterate that you may see lumps on a person with FOP’s body. Those lumps are swellings. They may change shape and size. They may feel soft, and if those muscles turn to bone, they will feel hard. When they touch different parts of their body they might feel those hard bumps.
    • If you want to take the explanation of mobility restrictions a step further for young children, you might want to add something that is more sensory-oriented. Follow your child's lead before initiating this activity. If they are asking questions and demonstrating readiness and eagerness to learn more this may be appropriate. If they are withdrawn they may not be ready for this level of information.
      • To represent the muscle, you can use any kind of air-drying clay, Play-doh or slime
      • Because most flare-ups aren’t immediate but happen over a longer period of time (overnight to weeks/months), be sure to explain that the bone may not grow as quickly as the texture hardens.
      • For the bone, you can use anything hard (like a popsicle stick).
      • Using two popsicle sticks, you can stretch the “muscle” over the top and demonstrate how it bends with the popsicle sticks and helps the body move.
      • Then, as the “muscle” starts to harden, you can explain how when a person with FOP’s muscles turn to bone, they can’t move or help the bone move either.

Key Points to End Your Conversations

  • Although a lot of things may be different after a diagnosis, it can help to end a conversation about FOP by reinforcing and reassuring children that not everything will change. Some routines and ordinary family life will carry on (whatever those aspects of normalcy are).
  • Highlight some differences in life, but try to end by focusing on the positive things they enjoy that will stay the same.
  • Remind them that it is OK for them to lead their own life and to enjoy having fun with friends.

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