If you are able-bodied and you have a friend or family member with SMA, there are some important things to keep in mind in terms of how you can be supportive. Maybe you recently became friends with an SMA individual or you have a family member who was recently diagnosed. These are just a few tips from the perspective of someone with SMA.
Treat your friend normally.
This is the first and most important piece of advice. Remember that SMA is strictly a physical condition, and that individuals retain normal cognitive functions. While SMA individuals do require extensive help from people for meeting their physical needs, they want to be a part of society just like everyone else. Offer them help when they need it, but don’t give them any kind of “special treatment” or single them out because of their disability. Treat them the same way you treat others in your friend group or social circle.
Offer to help, but don’t be overbearing.
The majority of SMA individuals are excellent at vocalizing their specific needs. If they know that you’re there, they will ask you when they need help. Granted, some are more reserved and have trouble asking people for help, but as long as you make yourself available to help your SMA friend or family member when you’re with them, that’s all you can do. Just don’t overdo it and try to do things for them when they want to do it themselves. The SMA individual knows their own needs, and if you’re their friend they will ask you when they need help.
Talk to them about their disability if they feel comfortable discussing it.
This one’s a bit tricky, as some SMA individuals (particularly kids and teenagers) don’t have any interest in talking about their disability. This is perfectly normal, and if you’re curious about learning more about SMA, ask your friend first if they feel comfortable discussing it. Some love to, and are more than happy to educate people about their condition. It all depends on the person. Generally though, if you show a genuine interest in learning more about SMA from a friend or family member who lives with it, they will usually respond positively and answer your questions. Always ask first though.
Always try to include them in social events.
Even the people with the best intentions can forget this tip. When you have a friend with SMA, obviously there are going to be things they just can’t do or events they can’t attend. If you and your friends want to go rock climbing for instance, don’t feel guilty because your SMA friend can’t do that activity. Nevertheless, try to make the majority of the things your group does together inclusive.
If you’re having a party, ask yourself if the house is accessible for your SMA friend, and check with them if you’re unsure. If you’re hanging out late on the weekends, offer them a ride so that their parents or caregivers aren’t overworked. Work something out with them and their parents so that they’re comfortable with you driving their adaptive van. These are easy solutions that many people don’t think about.
There are some things that your SMA friend simply won’t be able to do, and that’s OK. However, it’s very possible to include them in social events more often than not. Keep in mind that they have social needs just like you do.
Remember that every SMA individual is different.
Lastly, keep in mind that the needs, desires and personalities of SMA individuals are incredibly diverse. It’s easy to assume that everyone who has this condition has basically the same needs, but that is far from the truth. Treat your SMA friend or family member as an individual and strive to understand their specific needs. Knowing their capabilities and weaknesses is the best way to help them. And for more information about the SMA community, consult resources like SMA News Today, Cure SMA and a wide range of literature by SMA authors.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.