If you have a child with SMA type 3 (SMA3), you need to take some extra steps to ensure their school provides them with the learning environment and flourish academically they need, as well as young people who do not have this condition.
“While children with various forms of SMA have some physical limitations, this should not prevent them from being able to enter the classroom and learn next to their peers,” said Selene Almazan, legal director of the Council of Parents Lawyers and Advocates, Protecting Disabilities Legal and civil rights organization for students and their families.
When your children are between 1 and 3 years old, they will receive services such as physical or occupational therapy through your state’s Early Intervention (EI) program. Later, when they enter the school system, they will be eligible for an Individualized Education Program (IEP) or 504 plan. These plans detail the specific services, modifications and accommodations your child will receive from the school district.
Children with SMA often qualify for free preschool through the public school system to provide needed services, Almazan said. The district will likely assign them a support person or assistant at this time. This person will help them get around, lift or move objects, and use the bathroom.
You and your assistant keep in mind that your child will most likely want to socialize and do everything their peers do. “My daughter can’t ride a trike, but when her friends in preschool all ride theirs, her assistant will push her into the wheelchair so she can walk on the same path,” Victoria, SMA Advocate Strong recalls that her eldest daughter, Gwendolyn, had SMA type 1.
Your child may have had SMA3 since kindergarten, or they may only have had the diagnosis in elementary or middle school. Either way, it’s important to remember that your school district is required by law to make any necessary modifications to classrooms to meet your child’s physical needs, Almazan emphasizes. The school district is also required to provide you with instruction in what is called the least restrictive environment (LRE). That often means studying in general education classes with peers, she added.
Here are some other things to ask your region:
Reasonable access to schools and classrooms. When Jennifer Miller’s daughter, Madison, who has SMA type 2, entered kindergarten, Miller was shocked to find that the local elementary school had only one wheelchair-accessible entrance, and it was all the way in the back. “My first thought was, what are we going to do if it’s pouring rain?” Miller recalls. She was able to transfer her daughter to another school that was more convenient in the area.
By age 14, about half of children with SMA3 are unable to walk. Even if your child isn’t in a wheelchair, there should be accommodations, says Almazan. This could include ensuring that all classrooms they go to are close together to reduce the distance they have to walk. If the school has more than one floor, there should also be an elevator.
The school’s emergency evacuation plan should also take into account your child’s needs. For example, it should state who will go with them in an emergency. Also, with the help of the local fire department, they should be provided with a “safe room” to go to in the event of a fire.
Adaptive device. Children with SMA3 often find that their legs are weaker than their arms, and it affects muscles closer to the center of the body more severely. Your school’s occupational therapist should recommend adjustments to desks and chairs so your child is comfortable in the classroom. They may also need computer skills to revise written assignments or input using voice commands.
Family guidance. Children and adolescents with SMA3 may be more prone to respiratory infection complications because they have weaker breathing muscles. That could mean they need to stay home during the COVID-19 pandemic or during the annual flu season, Almazan said.
If this is the case, your school is required by law to provide what is known as a Free and Appropriate Public Education (FAPE) to homeschooling students. “Unfortunately, many schools will only do the bare minimum required by the state, and parents need to push for more,” Almazan said.
Adaptive physical education. Your school’s physical therapist can help modify gym and recess times so your child can participate. They can also set goals for the IEP that focus on helping your child maintain strength and stamina, as well as flexibility and range of motion.
Modified school activities. Field trips and school activities should take your child’s needs into consideration. For any activity, the school should make sure your child doesn’t have to walk too far from the bus to the gate, and that the activity is wheelchair and walker accessible.
To help your child’s classmates understand the situation, it may be helpful to write them and their parents a letter. This may include information on:
- SMA is not contagious.
- What your child can and cannot do.
- Why your child has an assistant.
- Why a cold is dangerous for your child.
- How to ask your questions or concerns.