SMA does not affect the brain or its development, and thus it does not affect an individual’s ability to learn and succeed academically. Parents should advocate for their children to be placed in appropriate academic settings to optimize their intellectual growth. Their physical limitations should not limit them from receiving academic stimulation in a developmentally-appropriate environment.
Early Childhood through High School
From ages one to three, your child will usually receive services through your state’s Early Intervention (EI) Program.
After age three, your child is eligible for an Individualized Education Plan (IEP) or a 504 Plan (named for Section 504 of the Rehabilitation Act and the Americans with Disabilities Act). The IEP details the specific services, modifications, and accommodations that your child should receive.
Children or teens with SMA may be assigned a paraprofessional (individual teaching aide) or a one-to-one classroom aide to assist them in getting around, lifting or moving objects in the classroom, and using the bathroom. Classroom modifications may be necessary to accommodate their physical needs.
SMA also does not affect an individual’s ability to build relationships with others. It is normal for classmates, particularly younger classmates, to be initially curious as most of them are unfamiliar with SMA and may have never seen a wheelchair or medical stroller before. Many parents have found it helpful to send a letter to their child’s classmates and to the parents of their child’s classmates. Or, if your child is older, he or she may want to send the letter.
Check with your child’s teacher and principal before sending the letter. Consider including a Cure SMA fact sheet (contact our office to request materials) or directing them to the Cure SMA website.
Your letter can cover information like:
- Your child can learn and build relationships just like other children
- SMA isn't contagious
- What type of SMA your child has
- What he or she can and can't do
- Whether your child has an attendant
- How it can be hazardous for your child to catch a cold—emphasize that parents should please not send a child who is ill to school
- How they can reach you if they have questions or concerns
- Wheelchair rules (or ask your child's teacher to cover these in class)
Many parents have also found it helpful to be involved in their child's school. Attend the "Meet the Teacher" night, and all parent-teacher conferences.
If appropriate, send another letter to your child’s classmates and their parents at the end of the school year, thanking them. If appropriate, send a letter to the principal and/or your child’s teacher at the end of the year, thanking them.
Consider sending a letter to a school board member or district superintendent, letting them know about your experience.
Many individuals with SMA have gone on to college as well. When selecting a college, it may be helpful to consider the following:
- Should you live on campus or at home?
- If you are going to live on campus, how far away are you comfortable going?
- Will the school be able to make appropriate accommodations for you—in both learning situations and living situations?
- Will you need personal attendants?
- What sort of support system will you have nearby (relatives, friends, physicians or healthcare providers, etc.)?
- What is the university’s healthcare system like? Are they familiar with SMA? What resources can they offer?
- In addition to tuition costs, how will you and your family manage any additional costs, such as salaries for attendants, transportation costs, or specialized technology?
- A Guide to the Individualized Education Program
- Family & Advocates Partnership for Education
- National Association of Parents with Children in Special Education
- Office of Special Education Programs (U.S. Department of Education)
- Parent Advocacy Coalition for Educational Rights (PACER)
- Special Education Resources on the Internet
- Your Child's IEP