The excerpt below is from our 2022 webinar Understanding B/DMD Behaviors for Adolescents & Adults. Thank you to psychologist Dr. Natalie Truba of Nationwide Children’s Hospital for being our guest speaker. Click here for the full webinar.
The Essential Daily Routine
There’s an incredible structure to the day when you go to school* and this is where the school setting becomes so important for kids with Duchenne.
Even though students might change classes every year, the school structure itself is something that is consistent. It’s something that benefits kids with Duchenne because each year they know that they are going to go to school. They adapt fairly well because they know what to expect.
Unfortunately, much of that predictability goes away when they graduate high school – especially that daily structure. When that structure and routine go away, it can affect the mental health, social health and self-esteem of individuals with Duchenne in a myriad of ways.
Coping Skills Benefits
That daily school routine is really helpful for these kids with Duchenne from a coping standpoint. Your brain has this predictive mode, so it’s going to predict, “this is what’s going to happen next and this is going to happen next.” And when these things really do happen, your brain is like, “Cool. This makes sense. I don’t need to be freaking out.” For any of us humans though, when the routine is off or different, we’re like, “I don’t like that.”
For these kids with Duchenne though, it’s like Swing-swing City with their nervous systems and emotions. So once they lose that routine – even though it might just be that they’re hanging out at home chillin’ all day – anything unexpected at that point is going to impact them.
So it is often better to have a routine – even if it’s busy – because then at least you’re in that predictive state where your brain knows what to expect. There isn’t a 0 to 100 emotional swing always happening. Maybe they’re physiologically humming along around a steady 30.
Mental Health Benefits
Then after high school, you often lose all the routines that are required to go to school – you’ve got to get up, you’ve got to get ready, you’ve got to brush your teeth, you’ve got to eat, you’ve got to be around people – all those things are natural buffers against Behavioral Inactive Induced Depression. This type of depression is one we often see once people are significantly less active than they used to be.
For example, if you just stayed home and stayed in bed for two weeks, you would start to feel really depressed – not because anything bad is happening in your life – but just because if you don’t do anything and you don’t move, it naturally impacts your mood. So, when you have a muscle disease, and you can’t move super well to do things, that’s a natural vulnerability for depression. So school helps to put a buffer in place that helps you stay active.
And it’s kind of easier to push in the place of distress when “we got to do we got to do” – like in school. It creates natural parameters that you have to function in. For example, if you get called on in class, you’re going to have to respond. Kids are going to be walking around you in the classroom and hallway and we have to learn how to manage anxiety. It puts you in positions that you have to navigate and that you can’t really avoid super easily. And that’s a really helpful parameter for these kids with Duchenne because it does put them in situations that otherwise they would have a high propensity to avoid.
Social Benefits
So, there’s a benefit to going to school with the same group of kids as you age, especially for things like the transition from elementary school to middle school. It’s the same with graduating from high school – it’s an experience that everyone shares, right? You could have DMD or you could have a spinal cord injury, or you could have diabetes, or you could be neurotypical, super healthy – whatever – and it’s still stressful to graduate from high school and to go on to the next stage. That experience is very inclusive. It’s an experience everybody shares and thinks is anxiety provoking.
So the formal school setting provides a lot of natural opportunities to cultivate routine that you just don’t get after graduation. When you lose that school environment, you lose access to things like easy opportunities for socialization and navigating relationships and developing friends. There’s something to being with the same kids for 12 years, that makes it a little bit easier to say, “Hi!” and to develop friendships.
Self-esteem Benefits
The routines in our lives are huge because routine gives you predictability. They give you consistency. They tell your brain what’s coming next and routines also help you feel productive.
So if you sit around and you do nothing all day, that doesn’t feel as good as sitting in your powerchair but still being able to say, “I did this, and I did this, and this, and this, and this…” It could be as simple as:
- I got out of bed.
- I got my chair.
- I went out of my room.
- I went down to the kitchen
- I ate a meal.
- Then I went to this room and I did this…
- Then I did this and this…
Routines also tell your brain, “This is a task and I did it, and this is another task and I did it,” and that brings a sense of achievement or completion. Having a routine actually breaks your day up and helps you recognize all that you’re doing and achieving and giving yourself that credit can be really, really important for your brain. Routines are also important because they help to keep us moving forward. Both of those – achievements and moving forward – are actually really important to human functioning.
Unhelpful Routines
Where routines become a problem, though, is if you have a routine – or a habit – that’s not helpful.
So, for example, we can’t just play video games all day. If you do, you’re eventually going to realize, “I actually don’t feel that good if I just play video games all day. I need other things to stimulate me that also make me feel good.” Since that is your routine and it’s done daily, that can be really harmful and then really hard to actually stop because now it’s like, “Well, this is just what I always do.”
So routines are really helpful unless they’re not helpful. And then it can actually be incredibly hard to get out of that routine. So I want to make sure we develop healthy routines – routines that are focused on breaking up the day, giving us things to do and that are actually good for us, too.
* There are kids with Duchenne who have other sorts of ways that they do school – like homeschooling – but by and large, the majority of our kids are in some sort of public education setting. I don’t mean to exclude those homeschool kids, but that’s a little bit of a different situation. So if you’re on this call, I would be happy to hear from you because I’d like to know what I’m not knowing.