Psychosocial health (also called “mental health”) includes behavior, emotional adjustment, learning/school success, and relationships. These things are very important for overall well-being and quality of life. Addressing the psychosocial needs of a person with Duchenne is an important part of your child’s medical care.

In this three-part blog series on Behavior Challenges and Duchenne, we have consulted with Denise Gruender, owner of ABC Educational Services, Matthews, N.C., to introduce three different behavior topics (encouraging positive behavior, establishing consequences, and resources to help you) to give you suggestions and tools that we hope will help you along the journey of parenting. Denise is has over 20 years of experience working with children, to include creating an amazing school for children on the spectrum, enabling their successful integration into the public-school environment.

Please note – This blog series is meant to provide simple suggestions for parents to try – especially parents who may be facing a new diagnosis or witnessing behavior issues in their child with Duchenne for the first time. These suggestions may not be appropriate for all children, especially those who may be a little older or those with more severe issues. We encourage you to explore the Learning & Behavior area of PPMD’s website for additional information, and consult with a qualified medical professional who can assess your child and suggest treatment options.

BEHAVIOR CHALLENGES AND DUCHENNE BLOG SERIES:
Part 2 – Establishing Consequences

As we discussed in Part 1 of this blog series, when managing behavior, the best thing to do is to begin with positive rules and positive consequences.

Positive Consequences & Thinking Time

Such as “If we follow our schedule stick without tears and frustration, If we leave the playground with a happy face, then we get to do… (whatever is positive for your child – special time with mom/dad, special tv show, special choice at dinner, etc.)”

If the consequences described do not work, you might consider utilizing a “thinking chair” or “thinking time.”  Thinking time means sending the child to a specific chair or room, a quiet space without technology or other comfort devices, to stay quiet and ‘think’ about the behavior(s) that required time out.

For instance, we don’t get to watch television or have dinner if the rules are not followed. It is ok to go to bed without dinner for one night. It is ok to cry, and should not result in giving in. These are also good rules for the rule wall and make sure all parents/caregivers are onboard (good cop, bad cop does not work for anyone).

Rewards

For some children, taking away things does not work. Often it feels like nothing impacts them. Sometimes a reward of the very smallest thing makes a difference.  It might be time– getting to lie in bed by mom/dad or getting mom/dad to read three books instead of two. Or sitting in a special chair at dinner may be important.

Engaging the Entire Family

If it makes sense, consider letting the child make a family rule and try to engage all family members in decision making whenever possible. One idea may be to consider asking the child or agreeing that the person in the family who follows the rules and has a good day, gets to choose the dinner menu.

In Duchenne, there are often so many obligations – medicines, supplements, night splints, doctor visits, clinical trials, etc. Giving the child(ren) power, enabling him/her to make choices about dinner, dessert, books to read, or even a sleepover for the weekend with cousins or friends, can make a world of difference in the middle of a stressful situation.

Sometimes the things we think are big are often small things to our child.  They want our time and our attention, and for us to be proud of them. These are great rewards. But great rewards come only when the rules are followed.

Also in this Series

In Part 1, we discussed ways to encourage positive behavior. In our next blog post, we’ll cover resources to help you.

Share Your Data

Your journey can help tell the story of psychosocial health in Duchenne and increase the understanding of experts in the field. That’s why we are asking you to update your Behavior & Learning Module in The Duchenne Registry. Log into your Registry account, go to your Dashboard, and click “Start Survey” next to the Behavior & Learning Module. If you completed the survey more than a year ago, click “Update Survey” to update your answers.

Not in the Registry? Join today and your data will help fuel the fight to end Duchenne.