ADJUSTING TO THE DIAGNOSIS

After receiving the diagnosis of Duchenne, parents often struggle with how to share this information with their children, other family members, and friends. While keeping this information to yourself can be incredibly burdensome, sharing the news of the diagnosis may help to relieve some of this stress. It will also begin to build a support system around you and your family. In addition, starting to talk with young children about their diagnosis will give them the information and tools they will need in the future to build a community of support that will enable them to thrive and achieve their goals, despite the challenges with their diagnosis.

Talking to your child with Duchenne about their diagnosis

Naturally, parents want to protect their children AND shield them from anything scary or sad. This can lead to parents delaying or avoiding talking about Duchenne altogether. They may be afraid of becoming emotional, saying something that causes distress or “makes things worse,” or of not having all the answers. However, even young children sense when something is not right. Silence is rarely the best approach. It implies the situation or illness is too horrible to think or talk about. It tells the child that parents don’t trust them to be able to deal with the situation. It communicates the message that “we don’t talk about difficult things”.

If children sense that whatever is happening to them is causing their parents pain, then may be reluctant to ask questions. They may attempt to protect their parents by not asking questions or saying things about what is happening. The reality is often that talking about Duchenne is usually more distressing for parents than it is for the child with Duchenne.

The first step is to realize that children can usually cope with questions and difficulties better than we think.  Rather than setting up a situation where they are afraid to ask questions, we need to create a space where they feel comfortable a safe to ask both the easy and hard questions about their diagnosis.

Children need accurate information to help them cope and thrive with their diagnosis of Duchenne. Starting the discussion with them ensures that what they learn is accurate and up-to-date, and will also prevent them from jumping to the wrong conclusions or learning faulty information from other sources.

Talking about Duchenne is also the first step in helping them develop independence in the future.  It gives them the words and know-how to advocate for themselves, take charge of their medical care, and educate others about Duchenne in the future. Remember, our job as parents is not to protect our children from all of life’s difficulties, but to equip them with the skills they need to succeed DESPITE life’s difficulties. Understand when you go into the conversation that your anxiety may be higher than theirs and that is okay.

When do I talk to my child about their diagnosis?

There is never a “good” time to talk about Duchenne, but typically earlier is better. Most children can start to understand a basic explanation by the time their mental development is at a 3 or 4 year old level. Starting early makes conversations more “normal” over time, because your child won’t remember a time when you didn’t talk about Duchenne. The longer you wait, the more awkward or difficult things become, and the more misunderstanding or misinformation you may need to correct. What you say to your children about their diagnosis depends on their ages and levels of understanding. It will be an ongoing conversation that EVOLVES over time; the first time you talk about Duchenne is only starting the process.

How do I talk about Duchenne with my child?

Parents often worry about what to say when it comes to Duchenne. You may be surprised about how much your young child already knows. You can first start by asking questions such as “do you know why we go see Dr. ____” or “have you heard anyone talk about your muscles, and what did they say about them?” This way, you can understand how they perceive Duchenne, and if there is any information you need to correct.

With younger children, it is important to offer simple explanations that they will understand. Connecting explanations to their day-to-day experience will make the most sense to them. This can be discussed “in the moment” as well, rather than in a planned conversation. An example would be while at the park explaining “your running is not as fast because when you have Duchenne your muscles are different and get tired more quickly” or at home explaining, “we do this stretching because your muscles are different.”

Use words that are at their level of understanding, and avoid medical terms or scientific jargon (which can be gradually introduced over time). Use the term “Duchenne” or “DMD” from the beginning, even though your child does not know what that means. By using the correct term during these conversations, you will help them learn what Duchenne or DMD is.

For children of all ages, ask them to explain in their own words what you have told them. This allows you to give reminders about information you discussed, and make sure there is no confusion. It is also important to try to be mindful of and avoid using any negative descriptions such as “bad” or “terrible,” and words like “disease,” which children associate with being contagious.

Don’t be afraid of saying the “wrong” thing.  At some point as parents, all of us say something that is “wrong,” and discussions about Duchenne are no different. By talking about things often, you can always fix any mistakes. The risks of NOT talking about Duchenne far outweigh this.

Resources that may help:

  • DMD and Me (download)
    This lovely children’s story was written by Sue Nuenke and her son, Christopher. Their goal was to create a short story that would help young children understand what was happening with their muscles and to help them cope with being unique and special.

The following are key points that may be helpful to cover during these conversations:

  • Your child did not get Duchenne because he is bad or did anything wrong.
  • Sometimes you are sad or emotional about your child having Duchenne, but it doesn’t mean you are upset with the child; they did nothing wrong.
  • Your child can’t spread it to someone else (like spreading a cold at school).
  • Your child’s Duchenne will not go away (like a cold does).
  • Your family will work hard to keep your child as healthy as possibly by going to doctor’s appointments, physical therapy, etc. Scientists are working to find medicines and other therapies to help people who have Duchenne. You want to help them understand that there are hopeful things happening and that doctors are helping them to feel they best they can right now.
  • Sometimes when you have Duchenne, you may need to do things in a different way.
  • Don’t avoid or discourage difficult questions your child may ask about Duchenne (“Am I going to die from Duchenne?”), because even young children are good at picking up deception and “non-answers.” At the same time, you don’t have to try to predict the future and every possible thing that might happen. It is okay to acknowledge the challenges of Duchenne, but balance this with hope and a positive message, and remind them that you will work together to solve problems.

Some children may become sad or upset  when you talk to them about Duchenne. Although this is difficult for parents, it is a normal and temporary reaction. During these difficult times, it is important to validate your child’s feelings and provide emotional support.

Balance times of hard conversations with fun times of bonding. Go for ice cream, play a family board game – you want them to associate the conversations with times of connection with you so they feel safe talking to you again.

Talking to siblings about Duchenne

A diagnosis of Duchenne may alter the family dynamic due to the attention and focus on the child with Duchenne. However, parents, relatives, and friends must not forget about the other siblings who are struggling with these changes as well. Remember that each of your children deserves, as much as possible, a happy, and normal childhood. Some siblings are afraid to have “problems” or share them with parents because they are afraid it will add to the parent’s stress. Make sure you check in with them and let them know they can also share their struggles with you.

Similar to the child with Duchenne, it is a good idea to talk to siblings as early as possible. Allow siblings to ask questions, even when you are at doctor’s appointments for your child with Duchenne. Siblings can also help you take care of your child with Duchenne, but be intentional about it not becoming a job. We suggest thanking them for their help and avoid phrases such as “I couldn’t do it without you.” Make it a priority to spend individual time with siblings to promote their own interests and development.

Remember that for siblings, it is not all negative. The dynamic of Duchenne in the family often makes the siblings more compassionate toward others, better problem solvers, and loving caregivers. Siblings often thrive in a Duchenne family when they know that they are heard, cared for, and are an integral part of family life.

How do I talk to my friends and family?

One of your first thoughts may be: “how will I tell my friends and family my child has Duchenne?” These conversations may be very difficult and upsetting for you and the people close to you. Although this conversation may be daunting, it is important to inform your friends and family of your son’s diagnosis so they have the opportunity to act as a support system for your family.

Keep in mind that everyone’s reaction will vary, and that ways of coping with such serious news differ from person to person. For many, anger, shock, and sadness are the prevailing feelings. It will take time for families to come to terms with the diagnosis. Knowing that they have a solid support system in place to help them face fears with courage and optimism can often reduce the anxiety and stress associated with these feelings. Also remember that not everyone will “get it.” Those people who do “get it” will be your greatest lifelines in this journey.

If you find it hard to communicate all of your wishes regarding your Duchenne child to family members, it may be easier to put it in writing. For example, if you want them to follow a certain type of diet when the Duchenne child is in their care, write it down and be specific. Giving them a written plan for various aspects of your child’s care may help in certain family situations.

Supporting Yourself & Relationships

All mothers and fathers want to protect their children, but a Duchenne diagnosis can leave you feeling helpless and isolated. The most important thing to remember when facing the challenges of Duchenne is that you are not alone. Keep in mind:

  • Try not to neglect your relationships – especially your partner – as you begin to adjust to this diagnosis. Spending time with each other is critical to helping you to adapt to this new normal as a team.
  • There are many professional counselors and other therapy options available to help families cope with the demands and challenges that accompany the diagnosis of Duchenne.
  • Anger, guilt, fear, and sadness are common feelings associated with the diagnosis of Duchenne. Do not feel guilty for having these feelings.
  • The course of coping is an ongoing process, filled with both good days and bad. Give each other permission and space to have good and bad days.
  • Asking for help or advice should not be considered a weakness or failure; it’s a positive and constructive action that can help everyone in the family deal with the issues at hand.

Remember that you and your partner (and/or your child’s other parent) may adjust differently to the diagnosis. Many times, acute grief reactions occur that may last from several months to years. The experience typically includes overwhelming emotions of shock, denial or suspicion, despair, anger, sadness/depression, anxiety, and guilt. Family members may experience this at different rates, resulting in conflict. Keep communication honest and open and understand that adjusting to the diagnosis can be different for the both of you.

Resources that may help:

PPMD can connect you or your family with a mentor that can speak with you about adjusting to the diagnosis. Please contact Ryan Fischer at ryan@parentprojectmd.org.

How do I address this with my child’s school?

PPMD wants to make sure that families within our Duchenne community are equipped with as many tools as possible to ensure a smooth start to the school year. It’s hard enough just to figure out the secret code to get through the front entrance, let alone to have to navigate considerations around 504 Plans and IEPs (individualized education programs), accessibility, and what information to provide to whom about your child’s medical care.

For these reasons, PPMD has developed a resource called Education Matters, which is a guide for both families and teachers to help children living with Duchenne be set up for success at school.

Talking to classmates and peers

When your child’s peers do not understand another child’s medical condition, they are more likely to tease, say hurtful things without meaning to, or ask repetitive questions in an intrusive manner. Research shows that when peers are given information about a child’s condition, they are less likely to engage in teasing, are more likely to be accepting/inclusive, and also often are protective of and “stick-up” for the child. It is also a great opportunity to help your child’s peers think of ways they can help your child such as help them to carry school materials, or being careful when playing.

Before talking to your child’s peers, notify your child that you will be doing so, and ask if they want to be involved. Sometimes, children like to talk about themselves and answer questions their friends may have. If your child is shy, they may prefer to be absent from class when the discussion happens.

Similar to talking to your child, it is important to give basic information only with simple explanations. Explain that Duchenne is something they were born with, it is not their fault, and it is not contagious to other kids. It is helpful to give examples of how Duchenne impacts daily activities, for example, needing to take rests if they get too tired. Visual aids or demonstrations can also help explain what happens to the muscles in Duchenne.

Continue to live your life

Remember, in every family communication is important. In a family dealing with a diagnosis of Duchenne, communication is CRITICAL. The goal is not to just survive, but to thrive and have a full and happy life even while you are facing a devastating diagnosis. There is hope, fun and many days of laughter and love to be had, and one of your main goals as a parent is to keep the lines of communication open with your family so that those days happen often.

The above information was provided by James Poysky, PhD, a clinical psychologist, and also a parent of a son with Duchenne, with reference to resources created by David Shoenfeld, MD, a developmental-behavior pediatrician specializing in trauma and adjustment.

Get support from PPMD

You are not alone. Though Duchenne is categorized as “rare” there is a huge active global community at your fingertips fighting day and night to end Duchenne. We want you to know everything that is available, but we suggest you enter into it at your own pace and comfort level.

Please visit our get support page to learn more about ways to get involved with the PPMD community.