Learning About Pompe
Living with Pompe
Strategies for Children
Strategies for AdultsSuggested Strategies for Helping Children Living With Chronic Neuromuscular Diseases
Listed below are some strategies that may be helpful to you and your child.
- Helping your child be as independent and active as possible. Giving children the chance to do tasks, chores, and activities that are tailored to their age and abilities can help them feel better about themselves. At every age, it may help to encourage involvement in sports, art, and music programs that meet your child’s need for social interaction and physical activity.
- Learning how to advocate for your child’s special needs. For example, work with your child’s school to set up an Individual Educational Program (IEP). This type of plan spells out the services the school must provide for your child, such as a personal aide, special equipment, or adaptive physical education activities.
- Taking some time for yourself. If you are caring for someone with Pompe disease, it is very important to take breaks from caregiving. Finding someone reliable and trustworthy to provide care for a short time may reduce stress and allow you to renew your energy. If your child needs round-the-clock care, it is also important for you to be realistic about how much of the caregiving you can handle by yourself. The groups listed in the Resources & Support section of this Website may be able to offer advice on how to get the support you need.
