Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder that causes muscle weakness and motor nerve degeneration over time. If your child has been diagnosed with SMA, part of the journey will involve explaining your child’s condition to others, including close friends and family members, child care providers and school staff, and your child’s friends and their parents.
Providing people in your child’s life with information about SMA and its symptoms will empower them to better understand and care for your child.
Educating those in your child’s life about SMA is a powerful way to help them better understand what you and your child are experiencing. However, feeling as though you must take on the job of explaining the disease to others can be overwhelming.
You may find it helpful to direct friends, family members, and educators to online resources where they can learn about SMA themselves. You can share links with others directly, or you can share them on your social media accounts so those who are interested can learn more about your child’s condition.
Online resources with helpful information about SMA include:
Although it may feel easier to share a difficult diagnosis like SMA with close friends and family members than with others, your friends and family might not fully understand what the diagnosis means or feel comfortable asking questions about it.
Starting the conversation with a simple explanation of what SMA is — and how its symptoms do (and do not) affect your child’s life — can be helpful. Because you will be repeating this information often, you may want to prepare and memorize a concise, clear statement about SMA that conveys the key points. Here’s an example:
“My child has been diagnosed with SMA, or spinal muscular atrophy. It’s a progressive, genetic condition that causes degeneration of motor nerves and muscle weakness. It will result in physical disabilities and changes in motor function, but it does not cause mental or learning disabilities. It is not contagious. We’re still learning about SMA, but please don’t be afraid to let me know if you have any questions.”
You may also want to let your close friends and family members know that treatments are available to help slow the progression of the disease and give your child the best quality of life possible. These include:
You can also take this approach in talking with your child’s siblings, who may be curious or even scared about the diagnosis. The best way to alleviate their concerns is to provide them with a straightforward explanation about what the diagnosis means in practical terms.
Encourage siblings to ask questions and express their feelings about the diagnosis. Like you, they may be struggling with certain aspects of the diagnosis. Supporting each other as you navigate these difficult and complicated feelings will help everyone to know that they are heard and appreciated.
Because children with SMA can have severe physical disabilities, some people may make assumptions about these children having mental and cognitive disabilities as well. As a result, it is important that parents explain to child care providers, school staff members, and other caregivers that children with SMA are not cognitively or emotionally impaired and that they are able to participate in school and extracurricular activities with appropriate accommodations.
It is important to understand that your child is entitled to certain accommodations or support systems under state and federal laws. Before the start of the school year, you should arrange to meet with your child’s teachers to discuss the accommodations and modifications your child needs. You should also make yourself available to answer any questions teachers or caregivers may have about SMA and your child.
If your child is in preschool, accommodations may be available through your state’s Early Intervention Program. Once your child reaches the age of 3, Individualized Education Program or 504 plan can be established to provide them with services and accommodations at school. These plans may include a classroom aide to help your child with performing physical tasks. They will also take into account any assistive devices your child may use for help with mobility, breathing, or swallowing.
SMA does not impact your child’s ability to develop friendships with classmates and peers. Children with SMA are just as able as other children to participate in many extracurricular activities. However, it may be helpful for you to tell the parents of your child’s friends about your child’s diagnosis. This will help them and their children be aware of your child’s needs and the specific ways they can help your child in school and social settings. Start with your prepared SMA statement and make yourself available for questions. If they request additional information, you can provide them with the links in the “Share Resources on SMA” section above.
The best thing you can do for the people in your life who care for and interact with your child — as well as your child themselves — is to proactively advocate on your child’s behalf. Provide information, be open to conversations and questions, and make it clear that your child’s SMA diagnosis doesn’t change who they are. Your child is the same loving, intelligent, beautiful person your friends and family knew before the diagnosis.
Parenting a child with SMA has many challenges, but you don’t have to go through this alone. Find your team at mySMAteam, the social network for people with SMA and those who love them. Here, you can meet others going through the same experiences. You can ask them questions, get advice, and share tips.
Are you the parent of a child with SMA? Have you found discussing your child’s SMA with the people in your life difficult? Share your experience and tips in the comments below or by posting on mySMAteam.