My parents were always pretty supportive throughout high school and college. Still, adolescence is a tough time for kids and parents alike. I have a few suggestions for parents of teens with spinal muscular atrophy (SMA) looking for a bit of advice from their kids’ perspective.

Transportation Cooperation

I cannot stress enough the importance of being socially active in high school, and part of that entails meeting up with friends outside of school.

I came out of high school and college with a happy number of friends that I made in different places over the years. But it was always a struggle to keep up with friends outside of high school since transportation was difficult. Most teenagers are able to freely visit their own friends by just jumping into a vehicle, but the circumstances for people in wheelchairs are usually different. However, my parents work all day, and when work is over, they just want to relax — understandably. Sadly, unless I found a personal chauffeur, that meant that most after-school activities were off the table.

With that in mind, it made more sense to go out and do fun things on weekends. Of course, even on the weekends, my parents would be exhausted. But I strongly recommend to parents that, if there is any option or possibility to provide transportation or assistance to your loved one with SMA, please take the opportunity to help them get out to socialize. The only other choice is for them to miss out on vital social opportunities.

Giving Them Space

The teenage years for someone with SMA can be complex, but they have the same need for time alone and apart from family as any other adolescent. During these years, most people branch off into independence. For someone with SMA, being truly alone is not quite an ideal situation.

I needed space in any way reasonably possible. My parents were usually great about it, but when they didn’t leave me ways to get solitude or time on my own with friends, it was hard on me. I did not have the ability to just leave to find space to get my thoughts together.

In any case, I’d remind parents to be on the lookout for signs that your teen needs alone time or independent time with friends. For people with SMA, even solitude can require cooperation from family.

Patience Wins

Part of being a teen is questioning everything, including your parents and the ideas and rules you grew up with. Some friction is going to be natural. It is not easy for someone with SMA like myself to deal with confrontation, since there is often a lot of exhausting overthinking that I do afterwards. Whether it is an argument, a “talk,” or a “civilized conversation,” they are never easy for the person with SMA.

I am more than willing to have level-headed conversations and to draw conclusions. I find it imperative even today for parents and others to do the same. Not everyone has patience enough to have stable conversations, but it’s worth it to put in the effort; it could save the person with SMA a lot of overthinking fatigue. Staying patient on both sides will help maintain peace and goodwill.

No Pressure

I suspect that my parents have some anxiety or fear that they are doing something wrong. Most parents do have some anxiety about parenting. In my mind, it is just as necessary to tell parents that everything is OK, just as kids need that reassurance from their parents. No matter the challenges, if I never told them what was working and what was not, how could they ever know?

Reassurance is a two-way street.

Make It Work

Parents and guardians all deal with their own struggles in life, as well as parenting a child with SMA. But patience and cooperation can make a big difference in a positive way.

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