The Chronic Meltdowns
Although the hallmark of Duchenne Muscular Dystrophy is the weakness in the muscles of the body, the brain and emotions are also affected. Indeed, emotional dysregulation and meltdowns are quite common with Duchenne.
For those familiar with the chronic physiological arousal of the DMD brain, these meltdowns are quite understandable. Add in the constant social stressors, the mental and physical fatigue, and the daily traumas that accompany living with Duchenne, and many medical professionals often wonder how these kids can stay composed at all. It’s a lot for anyone to process, especially children.
But for those unfamiliar with DMD brain physiology – unfortunately, society at large – these meltdowns aren’t understandable. Adults see these meltdowns as chosen disobedience, chosen disrespect, chosen manipulation. And so these kids are often punished for behaviors deeply rooted in their disease. In turn, these punitive responses to explosive behaviors often escalate the behaviors, the tension and the stress in the adult-child relationship.
But there’s another way to look at this behavior. We can look at this behavior as communication. And what they’re saying is “Help me.”
Humans are social creatures with a need to connect and communicate with others. We have multiple ways to do that, including spoken language and body language. Indeed, this dual modality serves us well. Particularly for children with Duchenne.
When emotions are regulated and stress levels are well within the window of tolerance, language is often chosen as the preferred mode of communication. Unfortunately, due to the lack of Dystrophin in the brain, children with Duchenne are frequently pushed beyond their window of tolerance. It can be particularly challenging for kids with Duchenne to articulate their stressors and problems, so they frequently communicate – unconsciously of course – with body language.
Truly, these meltdowns aren’t bad in and of itself. Stressful? Yes. Time consuming? Yes. But these behaviors are actually a very useful and effective mode of communication. They are attempts at connecting. They are attempts at making things better. They are attempts at asking for help.
So, how do we help them?
Emotional Support & Co-regulation
The interconnectedness of humans’ relationships is profound and awe-inspiring. Simply being in the presence of a calm human can guide a physiologically distressed person back to a calmer state.
When applied to the Duchenne world, this means that a calm adult can help guide a child with Duchenne back to a calmer state much more quickly than an agitated adult, or if the child is left alone. This skill does take practice, time and effort – which means that it also takes an adult who regularly attends to his or her own mental health.
One curveball in the Duchenne family, however, is that carriers have shown to exhibit similar physiological excitement as individuals with Duchenne, albeit to a lesser degree. This means that kids with Duchenne can become even more agitated if their carrier mothers and sisters are also agitated. If these situations are a daily occurrence – like a disastrous bedtime routine led by an exhausted carrier mom – it’s worthwhile to reexamine the responsibilities of the adults in the house to minimize the engagement during an already stressful time.
Communication and Collaboration
There is an emerging trend in our culture changing the landscape of child-adult relationships. While once the adult-child relationships were based largely on authority and children were “motivated” with punishments, many adults are now choosing a relationship with children based on mutual respect and collaboration. This strategy is incredibly helpful with children with explosive meltdowns, particularly children with Duchenne.
Since most of our children with Duchenne are already hovering at the peak of their window of tolerance just from common demands in daily life, any additional hint of a threat will tip them into flight or fight mode, and that classic Duchenne meltdown. Unfortunately, our kids with Duchenne carry so many stressors – physical, physiological, social, academic, emotional – that it’s impossible to guess which stressors have cumulated into this meltdown and what weighs on them the most.
So, maybe we can try talking to them. Maybe we can even try collaborating with them.
Dr. Ross Greene is a leading child psychologist specializing in challenging behaviors. He has authored many books, with perhaps “The Explosive Child” being the most well known. Many of his books focus on helping kids with challenging behaviors with his program Collaborative and Proactive Solutions (CPS). It gets to the root of the issue to start solving problems with the child, instead of punishing them for expressing their need for help. This type of strategy and relationship is exactly what our kids with Duchenne need.
Dr. Greene’s website Lives in the Balance has extensive information about working through challenging behaviors, identifying unsolved problems and collaborating with the child. Below is just an overview of Collaborative and Proactive Solutions.
Step 1: Change Your Lenses
- Solving Problems Rather than Modifying Behavior
- Solving Problems Collaboratively and Not Unilaterally
- Get You Out of the Heat of the Moment
- Kids Do Well if They Can
Step 2: Identity Lagging Skills and Unsolved Problems
- How to Complete the Assessment of Lagging Skills and Unsolved Problems (ALSUP)
- Sample ALSUP Meeting at School
Step 3: Solve Problems Proactively and Collaboratively
- The 3 Plans & 3 Steps of Plan B
In addition to actually solving problems rather than trying to manipulate a certain behavior, CPS models and teaches skills like problem solving, frustration tolerance and collaborating with others. These are all quite typically skills our kids with Duchenne need help developing.
Counseling and Psychiatry
Beyond changing communication band relationship dynamics, tools like play therapy with a PT, OT or SLP can often help to diffuse an agitated nervous system. Talking regularly with a therapist, counselor or a DMD life coach can also help individuals with Duchenne sort through the big challenges in life and reduce their daily stress load. Even increasing the child’s time with animals – with the family pet, with horses during hippotherapy, frequent visits to the zoo, or even taking the school pet home during school break – can all contribute to bringing some relief to their their anxiety and agitation levels.
Another fairly common choice for Duchenne families is to soothe the child’s anxieties with medication. There are simply times that an antianxiety or an antidepressant provides substantial relief for the individual with Duchenne that is not accessible any other way.
It’s important to note that both antianxiety and antidepressant medication have many options and are not necessarily a permanent decision. An individual with Duchenne can try an antianxiety or antidepressant and if it doesn’t meet his or her needs, he or she can always ween off. Of course, always consider the pros and cons with a doctor or psychiatrist for your specific situation.
Indeed, unbalanced neurotransmitters in the brain affect the entire human at the very core. Once those are more stable, it often paves the way for the strategies discussed above to be far more effective.
More to Consider