While Duchenne is widely known as a muscle disease, the family dynamics that tend to emerge with DMD can prove much more challenging. Just about every single relationship endures multiple unique stressors – including parent-child relationships.
Despite this, the Duchenne family can build a strong foundation for the struggles they will face. Relationships can strengthen and households can become calmer. It all begins with a parent who is willing to reflect and to make changes.
The stressors and responsibilities of parents of children with Duchenne Muscular Dystrophy are multiple and absolutely enormous.
Whether parents are advocating tirelessly to save their child’s life, or they’re grieving for their child in indescribable pain, they must challenge the fundamental belief that it’s OK to neglect themselves. Parents must invest in themselves so that the entire family will get the best that they can offer.
How parents respond to the stressors and anxiety of this Duchenne world will lead them and their family through fear or celebration… for years. Their mental and physical health – and the health of their whole family – depends on it.
The Duchenne Spectrum of Behaviors
Duchenne Muscular Dystrophy 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.
It’s typical that our kids with Duchenne cannot 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.
When individuals with Duchenne are in one of their meltdown situations – and this can happen several times a day – not many things will get through to them. Telling them to stop, using the time out, yelling, threats, punishments, etc. only exacerbate the behaviors because more threats are added on top of a nervous system that already feels threatened.
What will work is helping the child feel less stressed or threatened. There are multiple ways to do this, from using routines, to having a service animal, or even engaging in rhythmic movements. At the core of all this is an adult who is calm him or herself who can think clearly and rationally who can help soothe the child with a calm demeanor.
Many neurotypical kids learn life skills rather easily. Whether it’s cleanliness, voice volume control, social interactions, self-regulation, it’s just an innate tendency to absorb and learn these skills from other humans.
It’s not so easy for our kids with Duchenne. Many need direct instruction and practice in emotional regulation, in social interactions, in body language and eye contact.
In additional to life skills that humans typically need to thrive, these individuals with Duchenne also need another set of life skills to thrive: the life skills of an individual with a disability. Self advocacy, assertiveness, rapid problem solving, managing a team of caregivers, making complicated medical decisions are all typical skills that individuals with Duchenne use daily.
All these life skills can be learned, but only when the child feels safe and calm.
The school setting can easily be the most stressful situation that a kid with Duchenne experiences. It can be so overwhelming for some kids that their days and school weeks must be truncated in order for them to tolerate the environment, expectations and social interactions. In fact, many families and professionals have noted how much their children with Duchenne thrived in the homeschool setting during COVID precaution measures.
There are multiple ways to help the child with Duchenne specifically with the numerous demands from school. A predictable routine, a service animal, an emotional aide, prompt and frequent communication from the school, advance notice of school gatherings or substitutes, modifying schoolwork requirements, advanced planning for field trips and more can all help the child with Duchenne feel safer and more secure in their school environment and help the child thrive in his environment.
While every child is different with different needs, particular patterns often arise with kids with Duchenne. Parents and professionals alike have found that these 3 steps that will support the child with Duchenne: prepare, teach skills, help them process the traumas.
Prepare. Raising a child with Duchenne can be vastly different than raising a neurotypical child. As such, it takes extra personal self care, research, self development and physical work from the parents to help these kiddos thrive. Below are a few ways that parents prepare for parenting the child with Duchenne.
- Parent the Whole Child
- Teach Fundamental Life Skills
- Assume the Child is Competent
- Follow Routines and Create Predictability
- Use Proactive Parenting
Teach Skills. It can take more time and effort to teach basic skills to the child with Duchenne: tying shoes, using utensils, brushing teeth. In addition, many kids with Duchenne need help to learn self-regulation skills to counter Duchenne’s anxious tendencies. Many of these can help build those skills.
- Adequate Sleep
- An Emotional Aide
- Practice Breathing Patterns
- Practice Attention Control
- Provide Sensory Feedback
- Practice
Processing Traumas. Traumas happen to humans every day. Sometimes they are small traumas that may be encountered daily, sometimes they are big traumas that are extraordinary and damaging. The child with Duchenne encounters additional traumas than the typical child. From medical traumas to social traumas, physical traumas, and more, they need ways to address and process those events. Below are two suggestions about how to help them with that.
