If you have a child with SMA type 3 (SMA3), you will need to take some additional steps to ensure that their school provides them with the environment they need to learn and thrive academically as well as a young person without this condition.
“Although children with all forms of SMA have physical limitations, this should not prevent them from accessing their classroom and learning alongside their peers,” says Selene Almazan, legal director of the Council of Parent Attorneys and Advocates, an organization that protects the legal and civil rights of students with disabilities and their families.
The early years
When your child is 1 to 3 years old, he receives services such as physical therapy or occupational therapy through your state’s early intervention (EI) program. After that, upon entering the school system, they will be eligible for an Individualized Education Plan (IEP) or 504 Plan. These plans outline the specific services, modifications, and accommodations your child will get from the school district.
Children with SMA are often eligible for free preschool through the public school system to provide needed services, Almazan says. The district will most likely assign them a paraprofessional or assistant at this time. This person will help them with moving around, lifting or moving objects and using the bathroom.
You and the assistant will need to keep in mind that your child will most likely want to socialize and do whatever their peers do. “My daughter couldn’t ride a tricycle, but when her preschool friends all got on theirs, her helper would push her in her wheelchair so she could follow the same little path,” recalls Victoria Strong, a SMA lawyer whose eldest daughter, Gwendolyn, had Type 1 SMA.
Navigate the class
Your child may start kindergarten with SMA3, or they may just receive this diagnosis in elementary or middle school. Either way, it’s important to remember that your school district is legally required to make any necessary modifications to the classroom to accommodate your child’s physical needs, Almazan points out. The district is also required to instruct you in what is called the Least Restrictive Environment (LRE). That usually means in the general education classroom with their peers, she adds.
There are other things to ask your district:
Reasonable access to school and classroom. When Jennifer Miller’s daughter Madison, who has SMA Type 2, entered kindergarten, Miller was shocked to find there was only one wheelchair-accessible entrance to the local elementary school. , and that was all the way back. “My first thought was what would we do if it was pouring rain?” recalls Miller. She was able to transfer her daughter to another more accessible school in the district.
By age 14, about half of children with SMA3 are unable to walk. Even if your child isn’t in a wheelchair, there should still be accommodations, says Almazan. This can include making sure any classrooms they go to are close together, to reduce the distance they have to walk. If the school has more than one level, there should also be an elevator.
The school’s emergency evacuation plan should also consider your child’s needs. For example, it should indicate who will accompany them in an emergency. Also, a “safe room” they can go to in case of fire should be set up for them with the help of your local fire department.
Adaptive equipment. Children with SMA3 often find that their legs are weaker than their arms, and it affects muscles closer to the center of their body more severely. Your school’s occupational therapist should recommend adaptations to desks and chairs so your child is comfortable in their classroom. They may also need modified written assignments or computer technology that uses voice command input.
Home instruction. Children and adolescents with SMA3 may be more likely to have complications from respiratory infections because their breathing muscles are weaker. That may mean they have to stay home during the COVID-19 pandemic or during the annual flu season, Almazan says.
If so, your school is legally required to provide what is known as a Free and Appropriate Public Education (FAPE) for the student at home. “Unfortunately, many schools will only do the bare minimum required by the state, and it’s up to parents to push for more,” Almazan says.
Adapted physical education. Your school physiotherapist can help you change gym and recess times so your child can participate. They can also create goals for the IEP that focus on helping your child maintain physical strength and endurance, as well as flexibility and range of motion.
Modified school events. Field trips and school events should take your child’s needs into account. For any event, the school must ensure that your child does not have to travel too far from the bus to the door and that the event is accessible to wheelchairs and walkers.
To help your child’s classmates understand this condition, it may be helpful to create a letter for them and their parents. This may include information such as:
- SMA is not contagious.
- What your child can and cannot do.
- Why your child has a helper.
- Why it’s dangerous for your child to catch a cold.
- How to reach you if you have questions or concerns.