Common Family Patterns
The childhood years with Duchenne are complicated. So complicated. These years typically include the diagnosis, progression towards non-ambulation, and attempts at keeping the child socially included. This time is filled with chaos, fear, hope, advocacy, and attempts to keep everything “normal.”
Unfortunately, Duchenne isn’t the only stress in the lives of these families. These families are not exempt from the common stressors of the world and the world doesn’t stop for them. It’s important to keep in mind as we explore some stressful Duchenne patterns below, that these families also face “typical” stressors.
- The child with Duchenne struggles to fit in with peers, with managing schoolwork, following instructions and rules and “behaving properly.”
- Parents of children with Duchenne still have to navigate their child’s school and homework, encourage peer relationships and inclusion, ensure good job performance and a reliable income, and care for their own aging parents.
- Siblings are also expected to chug through typical life expectations. They must still cultivate important relationships with peers, manage schoolwork, behave appropriately, and develop a sense of self-efficacy – despite all the chaos at home.
- Grandparents have to consider their own job performance and financial health, retirement and living arrangements, their own health as they age, and how to fulfill the role of “grandparent” in the way that seems most meaningful to them.
While every family is indeed different and experience different circumstances, common patterns do tend to emerge within the Duchenne family and also within their social circle. While the following is not an exhaustive list of patterns the Duchenne family may encounter, it offers an intriguing introduction, thereby helping to illuminate the complexity of family life with a child with Duchenne.
The Child 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.
Simply put, at this stage of the disease, many parents are sprinting and gasping for breath.
Parents are often staying up late at night, losing sleep, excessively worrying, neglecting themselves, their friendships and maybe even their marriages. There is just so much to do and to learn at this stage, what other options are there – especially with adequate respite care being so scarce?
The unfortunate truth is that, yes, many parents are living in a state of chaos and crisis at this stage. While sprinting seems like the only way to manage the situation at this time, parents can’t sprint forever, and unfortunately switching from a sprint mentality to a marathon mentality may be very difficult.
But it must be done. The child with Duchenne benefits more from parents who prioritize their own self-care and their own mental health than those who don’t. Parents must slow down, see the big picture and make priorities. After all, a family is composed of more than just a child – even if that child has Duchenne Muscular Dystrophy.
The Significant Other
For parents who are married or in a committed relationship, the relationship often endures significant struggles. It sometimes even resembles the relationship of roommates rather than romantic partners. Overcoming these challenges often takes purposeful and creative thinking – and two dedicated partners – to keep that passion alive.
Between the common role changes that often occur with spouses, and the feelings of detachment and resentment that slowly simmer, prioritizing the relationship and implementing effective communication skills is well worth the effort.
Unfortunately, sometimes the Duchenne family does become a household with just one parent. In many ways, it’s both easier and harder for those who are parenting solo. Decisions can be made unilaterally, but decisions can also be intimidating. Friends become essential, but friends also have their own lives to live. Just about everything rests on the solo parent’s shoulders alone.
One of the hardest things about being a sibling of an individual with Duchenne is when no one talks about Duchenne. Siblings are relatively isolated in their access to information. Many parents avoid the topic, not knowing what to say or thinking they are “sparing” the other children from grief and pain.
The problem with that strategy is that kids constantly try to make sense of their surroundings and their own experiences. If they don’t have the information they need, they will likely create a story as well as they can with their limited information. If they are savvy enough to consult the internet, then they may encounter inaccurate information prompting unnecessary worry and anxiety.
Their Place in the Family
It can be rather confusing for a child to sort out his or her place in the Duchenne family. Parents’ actions may contradict their words, the time that each parent spends with each child is clearly skewed, and somehow the emergencies of the siblings are never quite as important as the emergencies of the child with Duchenne.
It’s an incredibly hard truth that the needs of siblings often come second to the needs of the child with Duchenne. Life threatening situations simply take priority over “typical” child drama, and unfortunately, those life-threatening situations may become frequent with Duchenne.
Siblings are also separated from their family more often than their siblings with Duchenne. The sibling is often excluded from the annual or bi-annual clinical appointments and also excluded from the travel for clinical trials. Not only is the separation from family confusing enough for the child, but their absence from appointments again excludes them from an opportunity to gain information about the situation.
“The Unaffected Ones”
The siblings of individuals with Duchenne are often called “the unaffected ones” by the medical community. If only that was true. Living life as someone with a sibling with Duchenne definitely affects mental health, emotional health, social health, and yes – sometimes – even physical health.
Between the terminal diagnosis, extensive responsibilities, challenges of social support, lack of sleep, changing relationship dynamics, medical emergencies and behavioral challenges, the chronic stressors are very real and quite overwhelming as a sibling of a child with Duchenne Muscular Dystrophy.
These are nowhere near all the stressors that siblings with Duchenne experience. In fact, there are so many stressors that the experience of living with a sibling with Duchenne can affect mental health. The allostatic load of repeated spikes of stress can actually change their brain chemistry, setting them up for a greater likelihood of anxiety and depression.
True, sisters can easily be carriers – and even manifesting carriers – of Duchenne Muscular Dystrophy. Unfortunately, not every family has the luxury of determining the carrier status of the daughters, and there are many families who simply choose to not know. In the end, even if a sibling does escape the genetic lottery, the experience alone of being a sibling shows that they are still clearly affected by Duchenne.
When that diagnosis of Duchenne is made, grandparents often swoop in to offer relief to their own adult child who is reeling – that very same adult who is also the parent of the child with Duchenne.
Grandparents often make many sacrifices to help their children and grandchildren with Duchenne. Grandparents may retire early, change careers to assist the family more easily, maybe even sacrifice their own financial security to help financially supplement their adult child’s family. Sometimes, grandparents even abandon their current occupation to assume the role of secondary, maybe even primary, caregivers of the children with Duchenne.
Despite the sacrifice and generosity many grandparents offer, they often have very little power or opportunity to do anything about the complications that Duchenne brings into the family’s life. Their ability to advocate or make decisions for their grandchild may be severely limited simply because they are not the legal guardian.
This lack of power may very well be one of the most unbearable themes of being a grandparent of a child with Duchenne.
Despite the prime position grandparents hold to offer to support the Duchenne family, often the relationship with their own adult child – one of the parents of the child with Duchenne – becomes quite strained. Communication can get tricky around an emotional topic like Duchenne.
Grandparents may want to be more involved with the family, but they may not know how to help out. They could ask, but they also don’t want to upset their child if he/she seems happy in the moment. Grandparents may not know what’s ok to say and what’s not.
But what’s even worse is when grandparents’ worry is minimized or dismissed by others, thereby shutting down any chance at communication whatsoever.
Yet another complicated factor for the grandmother is the question of whether she is willing to get tested for her carrier status.
Sometimes, grandmothers don’t want to get tested because they think that the results don’t matter anyway. They don’t know that if they are a carrier, their own health could be at risk. As for those who actually do test and are positive as carriers, they often struggle with extensive guilt and self-blame for “giving” their grandchild this terminal disease.
Change and Grief
There is yet one more struggle that is common to everyone in the Duchenne family. While it presents itself differently according to the role played in the family, it definitely adds a heaviness to life. That struggle is managing the continual changes associated with Duchenne and the subsequent grief that follows. Below are a few examples each role may be experiencing.
- The change and grief that children with Duchenne often experience include the change in their parents’ demeanor, the increased stress level at home, the increase in medical attention and possible medical trauma. Main caregivers may even change as well as parents’ roles in the family. The family may even move to a new home, a new city, or a new country. And then, there’s the ever-growing distrust of one’s own body.
- Parents’ change and grief include the trauma of the diagnosis itself, the increased stress levels at home, the increase in medical appointments, possibly changing roles at work or in the home, the changes in the marriage, maybe even moving to a new home or a new city, and the feeling that there is never enough money to meet their family’s needs. Of course, the mental and emotional preparation of burying one’s own child one day weighs heavily as well.
- Siblings often feel that something has changed in the family, but they may not have any details. They, too, often endure the increased stress level at home, their parents suddenly not being as predictable as they used to be, the siblings may even move to a new home or a new city with the rest of the family. They likely experience an increase in the family being separated due to medical travel or to participation in a clinical trial. Sometimes, children will have all the accurate information they need and want about the situation, and then they may simply realize the truth: they will likely survive their sibling and be the last survivor of their family.
- Like the parents, grandparents often experience the trauma of the diagnosis itself, the increased stress level in the home, the increase in medical appointments. They often experience this shift in power of wanting to ask questions but feeling hesitant to ask. Grandparents may possibly experience change at work or in the home, changes in their relationship with their own child, communication challenges and no one to validate their feelings. Of course, the heaviest one is the indescribable grief that one day they will likely outlive their grandchild.
Understanding, Compassion and Persistence
Despite the complexity of the childhood years of Duchenne, families can find their way. It will take understanding different family members’ experiences, it will take compassion, and it will take persistence.