Children with Duchenne
Strictly speaking, Duchenne Muscular Dystrophy (DMD) is commonly known by the lack of dystrophin in the muscles. Practically speaking, however, it doesn’t stop there.
Since muscles are such an integral part of the body, there’s a cascading effect of bodily systems affected by the lack of dystrophin. Symptoms of Duchenne manifest themselves in learning & relationships, in breathing, heart function, eating & digestion, sleep, stress levels, bone health, puberty, emergencies and surgeries.
Dystrophin in the Brain
While DMD is largely known for the weakness it creates in the muscles of the body, unfortunately, the effects of the disease don’t stop there. The lack of dystrophin also affects the brain and emotions. These, in turn, affect behaviors and relationships.
In fact, it’s typical that kids with Duchenne don’t meet society’s expectations – especially those rules about “good behavior” and “following directions.” And so, they are often reprimanded or punished for their behaviors… for behaviors that are rooted in their disability and far beyond their control.
From lack of dystrophin in the brain and unexpected behaviors, to situations that prompt meltdowns, to learning challenges and an overactive sympathetic system, these presentations of Duchenne seem to create more social challenges than the declining physical function.
In fact, some might even say that the amount of attention needed for social acceptance and inclusion of the child with Duchenne rivals the amount of attention needed to maintain physical health during childhood. There are just so many obstacles to fitting in, including the unpredictability of those Duchenne meltdowns.
Situations That Fuel Duchenne Meltdowns
Many people are often surprised when they learn that Duchenne meltdowns aren’t something in the child’s control. Those 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. Whether the trigger is medical equipment, sensory sensitivity, school settings, peer relationships, medical trauma or a challenging home life, these situations often contribute to the perfect recipe for unpredictable explosive meltdowns – that can last for days.
Understanding School Stressors
As mentioned above, while the hallmark of Duchenne Muscular Dystrophy is the weakness in the muscles of the body due to lack of dystrophin, the brain and emotions are not left unscathed. In fact, the lack of dystrophin therein is frequently evident in their mental health and learning differences.
In another layer of complexity to Duchenne, our loved ones with DMD have a much higher incidence of mental health diagnoses (and associated behaviors) than the general population. Duchenne-induced autism, Duchenne-induced ADHD, Duchenne-induced OCD are just a few of the common co-morbidities.
Learning differences certainly complicate matters at school. Dyslexia, dysgraphia, and dyscalculia frequently appear in our Duchenne population, along with all the other fine motor challenges of weakening muscles.
Many individuals, families and educators find this emotional and learning part of Duchenne harder to manage than the physical part.
Independence and Duchenne
In the challenging and complicated family life of Duchenne, the temptation can be great for the caregiver of an individual with Duchenne to make decisions for the individual “to make things easier” or “faster.” A crucial component of independence and autonomy is the caregiver’s willingness to relinquish control and to allow for the extra time needed.
Since individuals with Duchenne do rely on others so much for physical assistance, autonomy can be a challenging concept for the whole family to instill. Indeed, it’s a slippery slope to co-dependency with Duchenne. The caregiver-child relationship can easily become enmeshed and stay enmeshed, particularly as physical abilities decline. It takes intentional encouragement by the caregiver to prevent co-dependency from happening.
It’s important to understand, however, that autonomy begins in forming one’s own values, wishes and goals. Then another person – like a caregiver or personal attendant – can step in to help execute the plans. Once that decision is made, there is space for a beautiful person to blossom.