Learning & Behavior
Facts to Remember
- People with Duchenne may have a higher chance of having psychosocial issues.
- Healthcare is not complete without psychosocial care.
- Mental, behavioral, and emotional health should be screened at every visit.
- The best way to manage psychosocial problems is to prevent them or identify them early and start treatments.
- There are many different therapies and medications available that may help.
Understanding Psychosocial Health
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.
While most people living with Duchenne have no issues with mental health, there are increased risks of delayed development, as well as learning and behavior issues, difficulties with social interactions, and issues with emotional adjustment. Duchenne can (but does not always) affect brain development and cause weakness in certain cognitive or problem-solving skills. Medication side effects, fatigue, physical limitations, family stress, and difficulty coping with the diagnosis of Duchenne can also lead to psychosocial problems.
Don’t “wait for it to go away”
If you have any concerns about psychosocial problems, talk to your child’s doctor and take your child to see a mental health professional (such as a psychologist, psychiatrist, professional counselor, or mental health social worker). There are many different interventions and treatment options that can help. It is best to start early to work on a problem. If you have any concerns, don’t “wait for it to go away.” Get professional help.
What to look for
Think about seeking help if you notice any of the following:
- Delays in language development or problems with communication.
- Difficulty interacting with others and/or making friends.
- Your child is often angry, argues a lot, or is very inﬂexible about what he wants to happen.
- Your child is forgetful or absent minded, or has difficulty paying attention.
- Your child is very quiet and withdrawn, and prefers to be alone.
- Your child is very fearful or anxious.
- Your child often has a negative/pessimistic attitude or says bad things about himself.
- Difficulty learning new academic skills or earns poor grades.
- Your child has rituals or routines that have to be followed in a particular way.
- Difficulty sitting still, is impulsive, or very impatient.
Below is the recommended standard care for psychosocial health. Talk to your doctor about care options that go above standard care.
Don’t forget about mental health
At least once a year, someone from your neuromuscular clinic should check with you and your child about behavior, learning, emotional adjustment, and social functioning. If you have any concerns or need a more comprehensive assessment, schedule an appointment with a professional who specializes in evaluating and treating mental health problems.
Mental health should be evaluated by a professional who specializes in neuropsychological or psychological issues and testing. This person can do tests to identify learning, behavioral, or emotional issues (or risk factors for developing them), and can help you come up with a management plan. Ideally, this testing should be done around the time your child is diagnosed and as your child starts school (ages 5-6), or any time new concerns arise. Additional assessments may also be helpful to tell if your child needs speech/language therapy or if there are signs of an autistic-spectrum disorder.
Professional treatment options
Depending on your child’s needs, there are a number of interventions that may help. Examples may include psychotherapy (individual or group counseling, parent training, family therapy, and applied behavior analysis), academic therapies and Special Education, social skills training, and medication. If you are considering medication, make sure the prescriber knows about your child’s other medications and physical health, especially heart health.
Ways Parents Can Help
There are things that parents and families can do to promote psychosocial health in children and young adults with Duchenne.
- Talk to your child about Duchenne.
- Educate your child’s peers, which may make them more inclusive and protective.
- Educate school personnel and other adults in your child’s life about Duchenne.
- Help your child be as independent as possible, and don’t be over-protective.
- Encourage your child to participate in social activities.
- Consider canine assistants to promote independence and give emotional support.
- Take care of your own stress and emotional health, and model healthy emotional adjustment for your child. Have a hopeful and positive attitude, but acknowledge and express difficult feelings. Seek counseling and other supports for yourself.
- Get involved in the Duchenne community.
Families are also at risk of having psychological problems as well, such as depression. It is a good idea for parents, siblings, and other family members to have their psychological well-being assessed regularly so any problems can be addressed.
Plan for the Future
As your child gets older, encourage your child to make their own decisions about medical care, education, and activities. Discuss your child’s transition to adulthood. Talk to your child about goals and wishes as a teen and adult.