October 25, 2018 / Care

Behavior Challenges and Duchenne: Part 3 – Resources

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.

Part 3 – Resources

In Part 1: Encouraging Positive Behavior and Part 2: Establishing Consequences of this series, we discussed difficult behaviors and ideas for tools to help with parenting. It may also be helpful to enlist expertise outside your family.

There are other professionals who may be very helpful on this journey, but they may all not be available at your clinic and/or they may have very long wait lists for appointments.  It is important you check with insurance to fully understand what is covered within your policy and with your institution to see what resources are available to you/your child.

  • A psychologist is a professional who is qualified to assess, diagnose and treat psychological disorders (i.e., anxiety, obsessive compulsive behaviors, depression, etc.). These disorders are general in nature.
  • An educational psychologist is interested in discovering how your child learns (their memory, conceptual process and unique learning styles) and how the school/classroom might be able to help them learn more easily. They will be able to assess your child’s history, intellectual abilities, and basic academic skills.
  • A neuropsychologist is able to assess, diagnose, and treat psychological disorders stemming from medical diagnoses and conditions. For example, a neuropsychologist can assess the cognitive, behavioral, and emotional issues associated with Duchenne (or other diagnosis affecting the brain). Neuropsychological testing will help to capture your child’s developmental, medical, social, and psychosocial profile, as well as assess their intellectual, academic, attention, sensory motor, language, visuospatial, reasoning and problem solving, memory, and fine motor skills.  After the evaluation, the neuropsychologist will be able to give you a comprehensive report of their findings, as well as suggestions for further evaluation and/or treatment.

While you wait, be sure to see what help is available through your school. Most school systems have counsellors and/or educational psychologists who may be able to start the testing process. Getting this accomplished through your school will save you time and money, getting resources for your child that much quicker.

Additional resources that might help

PPMD has developed resources to help you, your child and your child’s school provide the very best learning environment.

Because your child has Duchenne, they will need either a 504 Plan or an IEP. This presentation (download) explains the difference between the two, as well as provide tips from those who have gone through the process.

To better assist parents and teachers in providing a quality education for the student with Duchenne, PPMD has created Education Matters Guides specifically for teachers and physical education teachers. The guides cover the basics of Duchenne and its progression to specific classroom accommodations organized by age group.

We also recommend that teachers familiarize themselves with learning and behavior issues children with Duchenne may exhibit.

As your child moves through the school year, these resources may be helpful in explaining Duchenne to your child’s school or classroom.

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.

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