When it comes to Duchenne, there’s not a “milestone checklist” that illustrates that an individual has achieved independence. Cultures vary, religions vary, countries vary, financial resources vary. Independence will look different for different families. And it should.
What is needed in every case, however, is an encouraging parent, caregiver, or assistant invested in the final outcome.
Independence in Your Family
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 “to go faster.” While this strategy does indeed reduce stress in the present, it can be quite detrimental for the future.
Caregivers must be willing to allow for the time commitment it takes for the individual with Duchenne to practice the skills needed for his or her independence. Caregivers must support this, even if it’s a bit more time consuming or frustrating. The end result will definitely be worth the investment.
When encouraging independence for an individual with Duchenne, the first place to start is to identify what independence means to your family. Only when you have that answer can you start laying the groundwork to achieve future goals.
When your family is ready to begin encouraging independence, you must presume competence for your child. Presume that he or she can participate in activities. Presume that he or she can communicate. Presume that this child can be successful.
From there, children frequently benefit from adults who problem solve creatively and collaboratively with the child. The child with Duchenne can undoubtedly achieve many of the independence goals your family values, but the path to get there will likely be a unique one.
Social-Emotional Independence
So much of the typical independence we expect from adults is rooted in basic social-emotional independence. Social-emotional independence is the ability to regulate one’s own emotional state and to enjoy fulfilling interactions with other human beings.
Each culture has its own set of expected behaviors for its people. When someone strays from those norms – such as exhibiting big reactions to small problems – relationships with other humans are impacted. These behaviors can confuse peers, can appear disrespectful to adults and ultimately may invite negative interactions and even varying states of isolation.
Social-emotional independence is particularly important for the child with Duchenne because they constantly live in a chronic state of elevated stress due to the very physiology of the disease. To compound that, children with Duchenne have a higher rate of mental health diagnoses than the general population – such as OCD, autism, ODD, and selective mutism.
Between these two factors, this elevated stress makes emotional regulation particularly challenging for the child with Duchenne. It’s fairly inevitable that children with Duchenne will exhibit explosive behaviors.
In the early years, many of children with DMD need a calm adult to help them through emotional co-regulation. They also need an adult to model for them ways to calm themselves and to support practice. Over time, however, the child should be able to build some aspects of independence over their own emotional lives.
Ways to encourage social-emotional independence include being mindful of the daily trauma they experience and creating a safe environment for them, allowing them the opportunity to experience different caregivers, supporting relationships both inside and outside of the disability community, talking with them about how their bodies feel, talking about their diagnosis and their future plans.
A support animal or even a family pet is also a great way for children to learn self-regulation strategies. From the touch of their fur, to the rhythm of the animal’s breath and the unfaltering affection of an animal, the companionship of an animal works wonders with encouraging independence.
Consulting professionals – like OTs, SLPs, and PTs – can really create opportunities for emotional development. Play therapy and counseling are also great avenues to pursue.
The benefits of having a trusted adult in children’s lives – in addition to parents – are innumerable. Connections with other trusted adults become increasingly valuable as the child gets older and needs help with emotions and situations they don’t want to discuss with mom and dad.
Understanding, Compassion and Help
Independence may look very different for those with Duchenne, and it may include many struggles. When that happens, all that our children with Duchenne can hope for is an adult to understand what’s going on, to show them compassion, and to reassure them that their unique style of independence is perfect just for them.
