Thriving on Predictability
While Duchenne Muscular Dystrophy is widely known as a progressive muscle weakening disease, the effects of Duchenne don’t stop there. It also affects the brain, emotions and behaviors – often with little mercy.
Individuals with Duchenne are at max anxiety and stress levels just about from the moment of waking. The lack of dystrophin in the brain continuously ignites the sympathetic nervous system (the fight, flight, or freeze system). The weak respiratory muscles prevent the parasympathetic system (that relaxes the body) from engaging. Add in daily situations that increase their anxiety and the drugs commonly used for the condition and our loved ones just get no relief. Their anxiety and stress levels truly have nowhere to go but up.
It should come as no surprise, then, that individuals with Duchenne often behave in ways that are socially unexpected. They might fixate on ideas, avoid eye contact, interrupt repeatedly, not talk at all, show hyperactivity, and meltdown when changing activities. The list goes on. It’s not purposeful disrespect. It’s not manipulation. It’s not bad parenting. It’s Duchenne Muscular Dystrophy.
And how adults respond to the behaviors frequently exacerbates the situation.
Common practices around the world like authoritarian parenting, rewards and punishments, even threats – in fact, many of the practices that today’s adults endured as children – will not make a child with Duchenne “behave.” Actually, adding more fear and danger to the situation with threats and punishments often make the child’s reactions and behaviors significantly worse. It’s imperative to understand that the behavior of a child with Duchenne is largely driven by the physiological responses to fear and danger, not the calculated decisions of a logical adult.
And so, one of the most effective – and compassionate – ways that we can support kids with Duchenne is by helping them calm their nervous systems. We need to create an environment for them that provides more predictability and more feelings of safety. This safe environment, in turn, provokes fewer explosions and promotes more rational thoughts. At last, the ability to trust their surroundings and engage meaningfully with others begins to emerge.
It takes a little bit of thinking, problem solving, and planning – and lots of patience and emotional regulation from the adults – but it can happen. Our kids with Duchenne thrive on predictability, scheduled breaks, emotional support and sometimes even a bit of medication.
Kids with Duchenne who have an over engaged sympathetic nervous system need a consistent daily routine. That consistency, in turn, sets the stage for predictable, expected activities with few surprises. They need a consistent wake time, consistent mealtimes, consistent activity times, consistent downtimes and a consistent bedtime.
Even on holidays? Yes, even on holidays. Actually, especially on holidays.
The very act of going away from home or straying from their predictable daily routine – while often exciting and rejuvenating for other family members – carries an element of uncertainty and fear for our loved ones with Duchenne. The uncertainty and fear inch them a little bit closer to the top of their window of tolerance, making their fuse for explosive meltdowns even shorter.
Not only do our kids with Duchenne typically have an over engaged nervous system, but they also have fewer physical opportunities to release that stress. Due to the missing dystrophin in the muscles, they simply don’t have the endurance it takes to relieve their stress through physical exertion.
If they do try to keep up with the other kids, they can easily injure themselves or cause irreparable damage to their muscles. In addition, if they follow current protocol for corticosteroid use, they are at a higher risk for bone fractures and fatty embolism syndrome. The anxiety relief they want so badly just isn’t possible this way. Our kids with Duchenne need our help to calm down and to reset their anxiety levels.
Consistent scheduled breaks during the day can help. Spending time with the rhythmic motion of a rocking chair, or a swing, or the sound of ocean waves have all proven effects of destressing. Rereading the same familiar story can also help. Try adding in a tactile sense like petting an emotional support animal, fiddling with a soft blanket, or spinning a weighty fidget spinner. Sometimes engaging the olfactory system with a scented pillow or an essential oil can help as well.
Physical Release of Anxiety
Lastly, creating a routine where they can physically – but safely – release their anxiety can make a huge difference as well. Access to a heated pool or weekly hydrotherapy does wonders for the body with Duchenne and oftentimes even more for the emotions.
The Years to Come
Not only can these gifts help the child blossom and grow, but it can do the same for your relationship.
The adult establishes him or herself as a guide to calmness, a resource who can and will help, and someone with whom the child feels safe. Ultimately, these connections are essential for the relationship so the adult can continue setting the tone and teaching the child about what it means to thrive with Duchenne for years to come.