Children and Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is a long-term progressive disease that causes muscle weakness. This affects each child with SMA differently. Children often have physical limitations, which may require accommodations in school and at home.

SMA may also affect the mental and social health of children. Feelings of loss of control and social isolation can lead to poor mental health.

Coping with the impact of SMA is important to maintain mental health and quality of life. Talk to your doctors to find ways to make life easier in school and at home.

How does SMA affect experiences in school?

Children with SMA have normal intelligence and emotional development. In fact, some research shows that children with SMA have higher intelligence scores than their peers.

School is often a place for children with SMA to excel. Extracurricular activities can also help children with SMA to meet people and explore their interests.¹

Students with SMA may need help participating in academic and after-school activities. Certain changes to the school environment may make it easier to do schoolwork.

An occupational therapist can work with the family and school to suggest helpful accommodations. Some potential accommodations include:²

• Having an aid or someone to help with physical needs, such as taking notes
• Adapted physical education to focus on recreation
• Additional sets of textbooks to avoid transporting them
• Access to an elevator
• Designing the class schedule to reduce travel
• Accessible seating in the classroom
• Special consideration in emergency evacuation, field trip, and school event plans

In the United States, certain laws protect students with SMA. The Individuals with Disabilities Education Act (IDEA) requires public schools to provide accommodations. Section 504 of the Rehabilitation Act requires that schools with federal funding also remove barriers to learning.³

How can the home environment be more accessible?

Improvements to the home environment can make life easier for children with SMA. Some of these may be small changes, while others are larger renovations.

An occupational therapist can work with you to suggest ways to make the home more accessible. Examples include:^4-6

• Bathroom – Grab bars, roll-in showers, altered toilet seat and sink heights, benches in the shower
• Kitchen – Moving common items to accessible drawers, installing pull-out shelves in cabinets, having space under counters for wheelchairs
• Bedroom – Adjusting bed heights
• Doorways – Widening doorways for wheelchairs and scooters
• Flooring – Using tile and wood flooring instead of carpet
• Fixtures – Moving low-hanging lights and fans, using smart-home fixtures that can be controlled with a remote

Experts suggest making a few modifications at a time instead of all at once. Make changes based on your child’s struggles or challenges.

Making changes based on what you think your child needs in the future can lead to unused and expensive modifications. Talk to your insurance provider, SMA organizations, and social workers for help finding financial resources.⁶

Can children with SMA participate in sports?

Children with SMA can still take part in sports and other activities. Staying active may be difficult because of muscle weakness and breathing problems. However, many experts believe that being inactive can worsen symptoms.

Ways that physical activity can help children with SMA include:^7-10

• Protecting joints from stiffness
• Maintaining range of motion and blood flow
• Allowing more exploration of interests
• Increasing socialization
• Better mood, sleep, and mental health

Your doctor can recommend safe ways to exercise and participate in sports. Some summer camps for children with neuromuscular disorders provide an environment for these activities. Popular activities for children with SMA include:⁷

• Wheelchair-adapted sports, such as soccer and tennis
• Swimming or exercising in a warm pool
• Horseback riding

Talk to your doctor about any exercise or physical activity. They can make sure your child is participating safely. They can also suggest adaptive aids and braces to help support your child during activities.

What is the impact of SMA on children’s mental health?

Mental health refers to emotional, mental, and social well-being. It affects how we process and react to information.

Many factors contribute to mental health, including biological factors and life experiences. Mental health can change often, depending on our experiences.¹¹

Living with SMA can take a toll on children’s mental health. Experiencing chronic symptoms can cause anger, frustration, and other emotions. Common ways that SMA can worsen mental health include:^12-14

• Lack of control over the illness
• Lack of independence
• Anxiety and fear of the future
• Social isolation and not fitting in at school
• Low self-esteem or self-confidence

These lead to anxiety and depression for many children. Find ways to keep your child optimistic and help them develop a positive sense of self and body image.

Consider talking to a therapist or counselor to find ways for your child to improve their mental health.^11,14