When a child receives a muscular dystrophy diagnosis from a pediatric neurologist, it can be a challenging time for them and the entire family. Supporting a child with muscular dystrophy can leave you feeling powerlessness in the face of their condition. But if you take small steps, stay organized and if you’re aware of the shifting needs of your whole family, you will have the strength to offer your child the loving care they need.
Take Small Steps
Caring for your child should not be a solo effort. Take advantage of your support network for help with tasks. Getting assistance with grocery shopping and babysitting siblings can go a long way to helping you better care for your child. Your pediatric neurologist can also recommend support services that will help you along the way.
When you care for a child with muscular dystrophy, your workload will increase. Tracking and prioritizing tasks is an easy and important way to stay on top of things.
It’s also important to develop a routine and stick to it. Your child (and their siblings) will also benefit from maintaining a regular routine. This is good advice for any family, but it’s essential when caring for a child with special needs.
Be Aware of Your Family
It’s important to not let a diagnosis of muscular dystrophy create a cloud over your family. Take time out for your spouse and other children. Listen carefully to understand their fears or worries in order to reassure them.
Pay attention to the activities your child with muscular dystrophy enjoys in order to plan future activities. For example, well-timed pizza night can do a lot to lift your child’s spirits.