Most people aren’t familiar with spinal muscular atrophy (SMA) until it affects their child. Whether your child was diagnosed during prenatal testing or newborn screening or in early childhood, you suddenly had a whole new world to learn about.
Although SMA is a rare neuromuscular disease, you are never alone. Parents and caregivers on mySMAteam offer support and suggestions to others. One member advised, “If kids don’t meet their developmental milestones, ask every question to the doctor. … Don’t get scared. It’s about you as a parent learning how to work this out. There is a lot of support and care available; just ask.”
Every parent and caregiver wants what’s best for their child, and learning more about what to expect will help you be prepared to provide just that. In this article, we’ll cover some of the first steps to take in parenting a child with SMA.
It’s not unusual for parents to go through a range of emotions as they begin to cope with their child’s diagnosis of SMA. Most parents and caregivers have some vision of how their child’s life will unfold. Some parts of this vision may change once SMA comes into the picture. This sudden change can lead to feelings of grief, including anger, fear, denial, and depression.
It’s important to remember that every child is different, and doctors can’t perfectly predict how SMA will affect your child over time. It’s also important to remember that significant advances made in SMA treatments over the past few years could affect life expectancy.
Talking to a therapist and connecting with other families through SMA support groups — online or in person — can be helpful as you work to accept and understand your child’s diagnosis.
Educating other people about SMA can increase their level of empathy and understanding toward your child. Offering information and encouraging others to ask questions can reduce the stigma around your child’s condition and help others feel more at ease.
Oftentimes people make insensitive comments or distance themselves from loved ones who are going through hardships because they don’t know how to react. Giving your family members and friends the benefit of the doubt by reaching out first may open the door for them to reciprocate with a more supportive attitude.
Of course, the ball is in your court. It’s up to you if you choose to share your child’s diagnosis. If you’d prefer not to talk about your child’s condition with others, you can simply say that there are some medical concerns that you’re not ready to discuss yet. This sets an example for your child by showing them that they have the right to talk about their SMA on their terms. People who care about you should respect your boundaries and allow you to open up in your own time.
If teachers and administrators aren’t familiar with SMA, parents and caregivers often have to advocate for their children to ensure that they receive the tools necessary to be successful in school. The Muscular Dystrophy Association has a helpful flyer on SMA geared toward teachers. This flyer shows how physical therapy can be incorporated into the school day and discusses modifying the goals of physical education classes for students with SMA.
You can also talk to your child’s teacher about setting up a presentation for your child’s classmates on SMA, which may reduce bullying and increase acceptance.
Examples of accommodations in school include:
Familiarizing yourself with the resources available through the U.S. Department of Education’s Office of Special Education Programs can help you feel equipped to advocate for your child’s education.
Finding compassionate and knowledgeable health care providers can make life better for both you and your child. You may work with several specialists throughout your child’s life, including neurologists, pulmonologists, respiratory therapists, and dietitians.
To build your health care team, start by asking for referrals from your child’s pediatrician, or contact your nearest children’s hospital to find resources nearby. You can also request information from the Muscular Dystrophy Association to find clinics in your area.
The U.S. Food and Drug Administration (FDA) has approved three therapies for SMA:
Geneticists continue to research new treatment options in clinical trials. A pediatric neurologist should be able to guide you toward the best available treatment options, which may include gene therapy.
In addition to prescription medications, your child may require respiratory therapy, feeding therapy, and physical therapy. Your child’s doctor can advise you on what types of therapy are most appropriate.
State and national agencies are available to assist with the cost of medications and assistive devices for children with SMA. Start by searching for Medicaid resources in your state. Be proactive about medical bills. Ask to speak with the billing department in your child’s health care provider’s office to find out about ways to manage costs.
Your child may also be eligible for Supplemental Security Income and Medicaid benefits. Organizations like Cure SMA and the Muscular Dystrophy Association can offer guidance for navigating insurance and affording medications, assistive devices, therapy, and home care.
Part of accepting your child’s diagnosis includes accommodating their needs. SMA-friendly home modifications may include:
Work with your child’s health care provider to find age-appropriate ways to build your child’s ability to participate in their self-care. For example, maybe your child could prepare some of their own foods or learn to operate assistive devices without help. An occupational therapist can help you find creative ways to give your child autonomy starting at a young age.
Many organizations offer resources and support for parents and caregivers of children with SMA or other complex medical conditions. Cure SMA coordinates support groups and events online and in person. The Muscular Dystrophy Association also provides a list of caregiver-specific resources. You can also talk to your child’s health care team about support groups and resources that are available through the hospital or medical center.
On mySMAteam, the social network for people with SMA and their loved ones, more than 2,000 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.
Do you have questions or tips about parenting a child with SMA? Share your experience in the comments below, or start a conversation by posting on your Activities page.