Situations that Fuel Meltdowns
People are often surprised when they learn that Duchenne meltdowns aren’t something in the child’s control. The meltdowns are actually involuntary reactions rooted in the physiological stress largely created by the lack of dystrophin in the brain and body. Unfortunately, that’s not where the stressors end.
There are 6 common environmental stressors that compound the physiological stress for an individual with Duchenne. It’s the perfect recipe for unpredictable explosive meltdowns…that can last for days.
Each situation is considered individually below and this link combines all the segments in one convenient location.
Medical Care
When it comes to Duchenne Muscular Dystrophy, just the care alone can be quite stressful for the individual.
Enduring stretches when you’d rather play, wearing bulky splints while you sleep, going to therapies when you’d rather stay home, using medical equipment like powerchairs and hoyer lifts to make up for important physical limitations, like mobility and using the bathroom.
Common life activities tend to become rather complicated. It’s frustrating. It’s unfair. It’s exhausting. Every single day.
Misperceptions
When you live with chronic physiological instability – like most of our loved ones with Duchenne – your perception of your world can change quite a bit.
Background noise can be deafening. Minor clothes irritations can feel huge. Even a gentle touch can trigger misperception and lead to a defensive explosion.
The nervous system is always on defense and sometimes just makes mistakes. It’s all quite visible in those frantic unexplainable meltdowns.
School Settings
These stressors don’t magically go away in a school setting. In fact, they often increase.
The student with Duchenne often faces many physiological, social, emotional and physical challenges in a school setting. From sensory overload, to handwriting fatigue, to trying to understand social cues, school settings and academic demands are a lot to manage, and often it’s just too much.
Socialization and Peer Relationships
Many kids with Duchenne experience multiple layers of challenges when it comes to peer relationships. From playgrounds to bullying to friends without Duchenne-friendly homes and near constant need for supervision, Dr. Truba explains just some of the stressors and challenges that most children with Duchenne face.
Medical Trauma
The risk of medical trauma and its long-lasting effects are very real for the individual with Duchenne. Annual medical procedures, lab draws, and clinical trials can all contribute to medical trauma. It is a real burden that many individuals with Duchenne carry not only at annual clinical visits and clinical trials, but the medical trauma can be triggered in everyday life, too.
Home Life
Unfortunately, the home environment can be very stressful as well.
Even if it’s not overtly chaotic on the surface, familial and caregiver stress is bound to be lurking. Undercurrents of marital stress, grief, relationship incompatibilities, financial stressors, exhausting caregiver cycle, manifesting carriers’ nervous systems and sibling dynamics add more unique challenges to home life.
Cluster Meltdowns Over Days
The potential for unforeseen triggers seems to be almost everywhere our loved ones with Duchenne go.
Between their chronic physiological stress and the exacerbating situations explained above, these meltdowns aren’t a one and done type of scenario. When the stress accumulates, it can literally take days for the nervous system to re-regulate.
Understanding, Compassion and Help
When those unavoidable meltdowns and explosions occur, all that our children with Duchenne can hope for is an adult to understand what’s going on, to show them compassion, and to help guide them back to a manageable level of stress.
Some of the best ways to help a child who lives with chronic stress triggers like these involve a calm adult, compassion and communication.
More to Consider…