Changing the Conversations

Changing the Conversations

Tension often runs high in the Duchenne household. This can put everyone into an emotional, reactive state driven by the nervous system. Yes, even parents.

Even so, decisions still need to be made, plans need to be put into action, advocating needs to be done and medical options need to be explored. These ongoing demands mean that many of the conversations the parents in our Duchenne community have with their partner are typically rather stressful.

Unfortunately, two stressed adults – even if they love each other – can leave conversations with hurt feelings, misunderstood body language, and feelings of abandonment. If these are typical components of the parent interactions, it’s likely that the marriage itself may not be functioning well. It’s also possible that the whole family might be struggling, too.

The good news is that all this can turn around.

Individual Communication Skills

Conflict can often arise in a marriage simply because of miscommunication. It’s vital to the relationship, however, that partners don’t avoid conflict and that they sort through challenges in respectful and fair ways.

Below are some ways to support respectful and productive conversions:

  • Timing really does matter. Use soft start-ups to help your partner get in the mindset of communication and also to avoid impulsive emotional arguments.
  • Good communication takes some forethought. Both your message and how you say it are important to consider before the conversation when you are feeling logical and not emotional. Definitely don’t nag.
  • Good communication also takes good listening. You’re not the only one with points to make and with feelings to express.
  • Lastly, if you or your partner are prone to long term hurt feelings, check in with your partner before wrapping up to avoid adding new hurts to the pile.

Topics to Explore Together

Once you and your partner begin to have more productive conversations, you can put these skills to very good use. There are many topics you can discuss together to strengthen the relationship even more: namely, ways to reconnect, ways to reduce marital stressors, and the benefits of therapy.


  • First, start addressing ways to directly improve your relationship. Spend at least 20 minutes a day together reconnecting with each other. That means it’s a kid free zone – even in the conversation. This time is just about you two as individuals.
  • Be sure to create ways together to protect and/or rebuild romance. Romance after kids looks quite different from romance before kids. And romance with kids with disabilities is a whole other ball game. Some planning or scheduling may be required and that’s ok.

Relationship Stressors

  • Financial stressors are very real with a child with Duchenne. The weight on the main provider can be enormous and interfere with quality of life and relationships. Brainstorm together ways to reduce that pressure if it’s complicating family life too much.
  • Sometimes partners need to consider if roles need to be modified. The original divide and conquer strategies at diagnosis can actually undermine family goals in the long run. Between caregiver burnout and sole provider pressure, maybe there’s a way to lighten both of your loads.
  • Boundaries are important in every relationship, both to maintain a sense of self and to protect the relationship from outside stressors. Discuss ways to create healthy boundaries regarding in-laws, arguing in front of the children, and protecting important self-care time.
  • With all your efforts and changes, one would expect your partner to make a few changes of their own. If you find that they need some encouragement to reciprocate, that’s also an important topic to cover.

Couples Therapy

Couple’s therapy can be a wonderful tool to learn more communication skills, to have a “translator” between you both, to help identify how each partner contributes to the dynamics in the relationship and to have a regular time to discuss some of the more sensitive topics. 

Be aware that you don’t have to be “broken” to benefit from therapy – either individual or marital therapy. Research shows that marital therapy tends to be less effective than individual therapy, largely because couples tend to wait until the relationship is almost over.

Individual Therapy

Lastly, while many individuals will make personal changes while attending couples therapy, there may be times that individuals need to work on themselves independently of the marriage. Some spouses will recognize this on their own and some may need a little encouragement from their significant other.

If you decide to encourage your partner to do individual therapy, ensure that it is coming from a place of support and not criticism. Choose your words carefully and consider how your spouse may interpret them. Be prepared to start individual therapy on your own, too, if your spouse encourages you to do the same.

The Potential

Yes, these changes will take time, commitment and practice from both spouses to master these skills. But learning more productive ways to communicate has the potential to heal wounds, to repair the relationship, to function better as a couple and to function better as the parents in a struggling family.

Thank you to psychologists Dr. Laura Marshak (author of Married with Special-Needs Children and Going Solo) and Dr. Natalie Truba (of Nationwide Children’s Hospital) for providing insight into these complicated dynamics.

More to Consider