"My child has Duchenne muscular dystrophy, and some days are hard on my family."
- Maintain a positive attitude—Expressing gratitude for all that is positive in your life, rather than focusing on the negative, can help your child do the same. Together, you and your child can remain optimistic by learning more about the disease and focusing on everything you can control instead of the things you cannot
- Promote emotional independence—While still helping your child deal with the physical limitations of Duchenne, treat him or her the same way and with the same expectations as you would a child without Duchenne. It is important that children with Duchenne feel emotionally independent, since they, like their peers, want to form their own identity as they grow up
- Promote physical confidence—There are many assistive devices that can allow patients with Duchenne to feel more mobile. Canes, crutches, and walkers can offer balance support for those who are unsteady on their feet. Leg braces provide extra support for walking. Standing frames help children stand when they cannot do so alone. There are also many wheelchair options, such as power wheelchairs that help an individual to get around without the assistance of a caregiver. A physical or occupational therapist can help determine when to introduce these devices
- Incorporate a wheelchair into everyday life—If your child needs to use a wheelchair, work with rehabilitation therapists and his school to find ways to adapt the home and school setting to your child’s needs
- Encourage the pursuit of hobbies and passions—Emphasize what your child can do and let him find ways to do the things he wants. Children often find creative ways to participate in activities that interest them
- Plan family vacations—Get away together. With work, school, and chores miles away, your family can have an easier time having fun and relaxing
Duchenne can be hard on parents and families, so it’s important for caregivers to get needed help and support, too.
It is important for you to remain strong, find inner peace, and pay attention to your own needs when facing the challenges of the disease.
Here are some ways to help you take on any challenges that you might face, so you and your family can continue to enjoy a full, rewarding life.
- Minimize feelings of stress—Stress can use up a lot of energy, leaving you with less of it for your family, social, and work life. Find what works for you to de-stress. That might include speaking to a mental health expert or member of your religious organization, finding an exercise routine that you like, meditating, or even having a night out! Give yourself permission to take a break from caregiving
- Do not be afraid to rely on others—Make a list of friends, relatives, and other people you are close to you who you can reach out to for help. Many people want to be able to help, but might not know how
- Do not forget to take care of your own physical health— While life can be busy, do not let it get in the way of making sure that you are eating well (balanced, nutritious meals); staying active (exercising at least 3 times a week for at least 30 minutes); getting enough sleep (aim for at least 7 hours every night); and getting regular medical checkups
- Get involved in the community—Find a support group or attend a Duchenne event. Connecting with other families and community activists can be a rewarding and fulfilling experience
- Do not forget to laugh—Sometimes laugher really is the best medicine. A good laugh not only relieves physical tension and stress, leaving your muscles feeling relaxed, but it can also help your body release endorphins, natural feel-good chemicals. So if you find something funny, do not hold back. Let the laughter flow.
There is a good chance that those around you may not have an understanding of Duchenne. People often do not know how to react to disability and they can be afraid of the unknown. By teaching family, friends, and teachers about Duchenne and the way it progresses, those around you and your child can feel more comfortable. It may also be helpful for you, knowing that others around you are educated.
Talking to children:
When talking to children, for instance, your child’s siblings or friends, teach them about Duchenne at a level that they can understand and be prepared for how they may be affected. Educate them about how Duchenne progresses and how it will be treated. Let them voice their emotions.
Encourage children to treat your child as normally as possible. Remind them that your child is made up of more than just a Duchenne diagnosis. Your child has dreams and hobbies and passions just as they do.
Talking to a teacher:
Depending on his age, your child will have different needs that require different physical and academic accommodations in the classroom.
Explain to the teacher what Duchenne is, what symptoms your child is experiencing, and what symptoms are likely to arise in the future.
Have an open and candid conversation with the teacher, so that together, you can work to accommodate your child’s physical and developmental needs. Examples of accommodations include finding various ways to demonstrate academic understanding (besides written work), giving your child extra time to get from class to class, finding ways for your child to participate in class trips and gym class, and even asking the teacher if you can speak to the class when your child is not there. Explaining Duchenne to your child’s classmates in a way that they can understand can help raise their awareness and support levels.
Click here for more information about teaching others about Duchenne.