If your child has spinal muscular atrophy (SMA), you’re going to have to tell your friends, family members, and the staff at your child’s school about their condition at some point. Children with SMA have physical disabilities and often need special care, but the disease doesn’t affect their emotional and cognitive abilities. This can be difficult to explain to others.
Try the following helpful tips to break the ice.
Some children and adults may be too shy to ask about your child’s disease. You can help break the ice with a short introduction that explains what SMA is and how it affects your child’s life. Keep it simple, but include enough information so that people can’t make assumptions about your child.
For example, you can say something like:
My child has a neuromuscular condition called spinal muscular atrophy, or SMA for short. He/she was born with it. It’s not contagious. SMA affects his/her ability to move around and makes his/her muscles weak, so he/she has to use a wheelchair and needs the help of special aides. SMA isn’t a mental disability, so my child can think just like any other kid and loves making friends. Let me know if you have any questions or concerns.
Modify the speech to fit your child’s particular symptoms and the type of SMA they have. Consider memorizing it so you can easily recite it when the time comes.
SMA doesn’t affect the brain or its development. Therefore, it has no impact on your child’s ability to learn and thrive at school. Teachers and staff may not set high goals for your child to succeed academically if they don’t have a clear understanding of what SMA is.
Parents should advocate for their children to be placed at the right academic level. Call a meeting with your child’s school that includes their teachers, the principal, and a school nurse to help make sure everyone is on the same page.
Make it clear that your child’s disability is physical, not mental. If a paraprofessional (individual teaching aide) was assigned to your child to assist them around the classroom, let your school know what to expect. Classroom modifications may also be necessary to accommodate your child’s physical needs. Make sure this is done before the school year starts.
You’ll need to ensure a school nurse, after-school staff, or teaching aide understands what to do in case of an emergency or injury. On your kid’s first day at school, bring along any orthotics, breathing devices, and other medical equipment, so you can show the nurse and teachers how they work. Make sure they also have your phone number and the number for your doctor’s office.
Brochures and pamphlets can be incredibly useful as well. Contact your local SMA advocacy organization for a handful of brochures that you can give to teachers and the parents of your child’s classmates. The SMA Foundation and Cure SMA websites are excellent resources to point others to.
It’s natural for your child’s classmates to be curious about a wheelchair or brace. Most of them are unaware of SMA and other physical disabilities and may have never seen medical equipment and orthotics before. It may be helpful to send a letter to your child’s peers, as well as their parents.
In the letter, you can direct them to online educational materials and state the following:
- that your child is fine with learning and building normal friendships, and just because they’re different, it doesn’t mean you can’t talk or play with them
- that SMA isn’t contagious
- a list of activities your child can do
- a list of activities your child can’t do
- that your child’s wheelchair, brace, or special access equipment aren’t toys
- that just because your child has to use special equipment to write or use a computer doesn’t mean they are mentally challenged
- the name of your child’s dedicated teaching aide (if applicable), and when they will be present
- that your child is at a higher risk of serious respiratory infections and that parents shouldn’t send a child who is sick with a cold to school
- that they can call or email you if they have questions
If you have other kids who don’t live with SMA, their peers might ask them what’s wrong with their brother or sister. Make sure they know enough about SMA to answer correctly.
You’re still the same person you were before your child was diagnosed. There’s no need to disappear and hide your child’s diagnosis. Encourage others to ask questions and spread awareness. Most people probably have never even heard of SMA. Though an SMA diagnosis can make you feel depressed or anxious, educating others may make you feel a bit more in control of your child’s illness and the way others perceive them.