As part of our mission to provide exceptional care through groundbreaking research, we strive to provide families affected by NF with all of the necessary resources to address and manage this condition.
This emotional wellness section is designed to help you learn how to speak with your children about NF1. Not only does it focus on communication with your child who has a diagnosis with NF1, it also addresses effective communication with siblings and other family members who might need assistance understanding how NF1 can affect individuals.
Being a sibling of a child with NF1 can be scary. Many times their brothers and sisters are going through situations that are not easy to understand. Click on the topics below to learn more about different areas your child might want to talk about.
Talking about feelings
It is important for children to understand that feelings are natural and that it is okay to experience a range of emotions, especially when grappling with something as significant as a serious medical condition.*
The following books are good resources for starting conversations about feelings with your children:
- The Way I Feel, by Janan Cain
- My Many Colored Days, by Dr. Suess
- Today I Feel Silly & Other Moods that Make My Day, by Jamie Lee Curtis
The following pdfs outline a few activities to help begin conversations about feelings with your children:
Talking about treatment
Sometimes children with NF1 might be diagnosed with a brain tumor and have to undergo tests like MRI scans. It can be scary to know that someone you love has a tumor and is undergoing tests if you don’t understand what a tumor is or how it can affect the person you love.*
Talking about brain tumors
Question: What is a brain tumor?
Answer: A brain tumor is a group or clump of cells inside or around the brain that are not growing normally. All of us have normal, healthy cells in our brains (nerve cells). These cells work together to help us think, talk and walk. A tumor cell is an unhealthy cell that sometimes grows in the brain. Tumor cells grow together and do not leave space for normal brain cells to work properly. You cannot catch a tumor from someone else (it is not contagious), and no one can do anything to cause a tumor.
Talking about MRI scans
Question: What is an MRI?
Answer: An MRI is a test that uses a magnetic field and radio waves to take pictures of the inside of the body. It helps the doctors see what is going on inside the body. The MRI scanner looks like a tunnel at the playground. It may look large and scary, but nothing in the scanner will touch anyone during the pictures. The table a person lies on will be able to move in and out of the tunnel for the pictures. While the MRI is taking pictures, people may feel some air blowing or may hear some loud knocking noises, but remember that nothing ever touches anyone inside the machine. An MRI scan is important because it allows a physician and NF care team to choose the best ways to help people with NF1.
Recommended websites for further information:
Every kid just wants to be a kid, and sometimes feeling different can make it difficult to do that. Children with NF1 may be different in many ways, but there are ways to help everyone learn and play together.
Motor skill delays
Children with NF1 may tire easily, have trouble catching or throwing a ball and may not be able to run as fast as other kids. However, it is important to help your children remember this: being different isn’t always easy, and being supportive of everyone, especially when it is hard, is good sportsmanship and makes everyone a winner.**
Change the rules: When playing a game with set rules (such as baseball), consider throwing in a “crazy inning” where all of the rules change! Maybe everyone bats with their opposite hand or plays outfield with one hand behind their backs. The options are endless and fun for everyone. Also, remember to take breaks for water and rest – maybe a few more than usual.
Add a position: If someone does not want to be a part of the action, it may not be because they don’t want to, but because they are afraid they aren’t good enough. Let friends join in games to the level they feel comfortable. Every team can use a cheerleader or a coach. Don’t forget about referees. Being a part of a sports team does not necessarily mean being the pitcher!
Focus on strengths: Everyone is different. Thank goodness everyone is different – imagine how boring the world would be if we were all the same! Being different may mean learning to ride a bike a little more slowly or learning to catch a baseball with two hands rather than just one. These little differences make us all unique. And often, when someone seems to take a little extra time with one skill, they often have a really easy time learning another. Try to make sure to point out everyone’s strengths rather than focusing on what is hard.
Sometimes children with NF1 experience difficulties with school skills. Struggling at school can make children feel like they can’t keep up with their peers, which can be a very frustrating experience.***
The following books are good resources for starting conversations about learning disabilities and are available for check out at the Family Resources Center at St. Louis Children’s Hospital:
- Leo the Late Bloomer, by Robert Kraus
- Taking Dyslexia to School, by Lauren E. Moynihan
- Different Croaks for Different Folks: All About Children with Special Learning Needs, by Midori Ochiai
Talking about learning disabilities
Question: What is a learning disability?
Answer: Some children have trouble learning. When someone struggles with the process of learning, we call this a learning disability. Learning disabilities can affect many different parts of a person’s life including having trouble making good grades, having trouble completing homework, finding school work frustrating and having trouble playing games that involve skills such as reading or math.
Question: Does a learning disability mean that someone is stupid?
Answer: No. People with learning disabilities are usually just as smart as everyone else. They just need to work a little harder to achieve certain skills in areas such as math or reading. Just because someone has a learning disability does not mean they aren’t really talented in other areas like being a good athlete, artist or friend.
Question: Does a learning disability mean that someone is lazy?
Answer: No. People with learning disabilities actually work harder than other people to achieve certain skills.
Question: How can I help someone with a learning disability?
Answer: There are lots of great ways for kids to encourage other kids who have a learning disability. You can provide encouragement if you see that person is struggling with school or home work. You can remind the person of all the things that he or she is good at, and that you like him or her. Most importantly, make sure you never bully or even tease someone about his or her learning disability.
Read more about how parents can help kids with learning disabilities »
Attention deficit hyperactivity disorder (ADHD)
Sometimes children with NF1 have issues with attention that make it difficult for them to stay focused long enough to engage appropriately with their peers.
It can be a frustrating experience both for the child with NF1 and for the child with whom he or she is trying to play. Children who do not have ADHD may think a child with ADHD is trying to annoy him or her on purpose if he or she does not understand what ADHD really is.***
The following books are good resources for starting conversations about ADHD and are available for check out at the Family Resources Center at St. Louis Children’s Hospital:
- All Dogs Have ADHD, by Kathy Hoopmann
- My Brother’s a World Class Pain: A Siblings’ Guide to ADHD/Hyperactivity, by Michael Gordon, PhD
- Ethan Has Too Much Energy, by Lawrence E. Shapiro, PhD
Talking about ADHD
Question: What is ADHD?
Answer: Some children have trouble with attention. Sometimes these issues cause enough trouble for the person that we say that he or she has ADHD. ADHD can affect many behaviors that people express, including an inability to focus on a task or game, being easily distracted, having trouble being organized, moving too much, doing things without thinking or being impulsive and being loud. All of these issues can make it difficult for people with ADHD to form friendships.
Question: Do people with ADHD try to annoy other people on purpose?
Answer: No. People with ADHD do not want to annoy. They want to be your friend! What’s hard for people with ADHD is that there is something in their brain that makes it very difficult for them to sit still, pay attention or both. This can be very annoying to other people, making it difficult for people with ADHD to form relationships.
Question: How can I help someone with ADHD?
Answer: There are lots of great ways for kids to encourage other kids who have ADHD. First and foremost, try to be patient. It can be a challenge, but it will be worth it. Remember to focus on strengths. Everyone is different and everyone has things that are hard for them and things that are easy for them. That’s what makes everyone special.
Read more about how parents can help their kids with ADHD ».
*Special thanks to Megan Rennie at the Child Life Center at St. Louis Children’s Hospital for her assistance in creating these recommendations.
**Special thanks to Dr. Courtney Dunn, PT, DPT at St. Louis Children’s Hospital for her assistance in creating these recommendations.
***Special thanks to Dr. Jill Isenberg, Pediatric Neuropsychologist, for her assistance in creating these recommendations.