Talking to Your Child About SMA

When your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may want to know what causes SMA and how it will affect their lives now and in the future.

As a parent or other caregiver, it is your job to answer these questions in a clear and suitable way for their age.

Educate yourself about SMA

Learning more about the illness yourself is a good place to start in talking to your child about SMA. Knowledge is power. The more you know, the more confident you will feel when the time comes to educate your child.

Your child’s doctor will likely be able to provide more information or point you in the right direction. Several groups also focus on teaching people with SMA and their loved ones about the condition, including:¹

• SMA Foundation
• Cure SMA
• Muscular Dystrophy Association
• Hospital-based centers and programs

Ask questions and listen

Once you have learned more about SMA, ask your child what they know about the illness. Allow them to guide the conversation. This will help you figure out what they understand and reveal any knowledge gaps.

Ask if it is ok to share what you know about SMA. Correct any false ideas and help end any confusion. Watch how they respond both verbally and with their body language. Ask if they have any follow-up questions and about how they are feeling.

It is ok if one of your child’s questions stumps you. You can find the answer together through credible books, videos, websites, and other resources. This will help them feel more in control and confident in learning about SMA.²

Consider your child’s age

Age is a good benchmark for how much information you should share about SMA and how you present it. Younger kids need simple details, while older kids can understand more complex facts. Here are some ideas on how to talk to your child about SMA at each stage of development.^2-4

• Ages 3 to 5: Preschoolers’ ideas about illness are not very clear at this age. Stick with basic descriptions about their body, SMA, and treatments. You could tell your child, “Your crutches help you walk.”
• Ages 6 to 11: As your child reaches school age, they will grow into their logical thinking skills. They can understand more information about their body, their illness, and what causes it. You can offer clear-cut details about SMA. For example, “The doctor is going to give you a shot. It will allow your body to make a protein that helps your muscles work better.”
• Ages 12 to 18: Preteens and teenagers understand what causes their symptoms. At this age, you may want to talk to them about how they are missing part of a gene or have a changed (mutated) gene. Kids this age can also consider risk, like the potential for a bone fracture with certain activities.

Keep talking

At some point, you may stop talking to your child about their illness, figuring they understand everything. But it is important to always keep the lines of communication open. Check-in with them at least once a year to make sure they understand their illness and are able to express their feelings about it.