Articles 

Getting Support When Your Child Has Special Health Care Needs

Revised by: Carolyn Sewell-Roberts, LCSW

Cerebral Palsy (CP) Care at Nemours Children’s Health

When most parents think about the juggling act of raising a family, they think about coordinating soccer games with ballet and the weekly grocery shopping.

But if you're the parent of a child who's sick or has a disability, chances are your schedule also includes doctor visits, treatment and therapy sessions, as well as waiting for doctors and insurance companies to answer your calls.

What you need is help. But how can you get it? Here are some ways to make things easier for you. 

1. Accept help from friends and family. Everyone is busy, and that makes it difficult to ask for or accept help. You may struggle with getting help from your children or partner because they might not do things the way you would. Or maybe it's not your style to show others that you're stressed or overwhelmed by circumstances. After all, parents are expected to be able to multitask and manage their own needs and those of their children. But you're not superhuman. Turning to others isn't a sign of weakness, but of strength. Recharging your batteries from time to time can help you be a better parent, a better partner, and a better person. So, take the plunge and say "yes" when a friend or family member offers to help.

2. Be honest about what you need. By letting others know your situation, you're letting them into your world. When you tell a friend, "Going to the hospital alone with my child is difficult," you're giving them the opportunity to respond, "Let me come with you." When you say that it's sometimes difficult to get dinner ready, the person listening will know that a hot meal delivered to your home will be a great help.

3. Create a list of needs. How many times have you heard someone say, "If there's anything I can do for you, please let me know." And how many times have you answered that question with "Yes, of course," but then not asked for any help? People want to help, but don't know how. Make a list of the things that would make your life a little more bearable. And then assign the task to the friend who would be easiest to help. Do you need help picking up your other children from school? Ask a neighbor who is picking up their own children. Ask your parents and their other children to do things they enjoy, such as watching your child while you rest or cooking meals for them and then freezing them. Social media can make it easy for you to ask for help. Post your needs on your personal social media page or register on one of the many caregiver websites. These sites allow you to create a list of needs (e.g., dinner twice a week, lawn mowing once a week, company for hospital visits, etc.) so your friends can sign up for the tasks that best fit their skills and schedule.

4. Find other caregivers. Parents of children with disabilities often feel that they are the only ones capable of managing their child's care. But that doesn't mean you can't separate yourself from your child for a few hours from time to time. By leaving your child in the care of a trusted caregiver or relative, you will be teaching them how to handle change. Your child will develop the resilience and adaptability that every child deserves to learn.

   To ensure that the person who will be taking care of your child will be up to the task, consider training them beforehand. Many hospitals and state social services agencies offer classes for siblings, parents, grandparents, teachers, and caregivers.

5. Consider home care services. If your child's medical problems are chronic or serious, some insurance companies cover in-home nursing care for several hours a week. Contact your benefits provider to find out if you qualify for these services. Family support services may also be available for children with developmental disorders, including autism. These services may include an in-home caregiver so you can leave your child with you and rest for several hours or overnight, or a community-based program where children with special health care needs are provided.

6. Turn to the experts. Talk to the social worker on your child's team. Social workers can inform you about local help and support services available in your area that can help you offload some of the burdens (and some expenses). These include family assistance, government benefits, and financial support. Social workers can also provide emotional support and help you find ways to practice self-care. Family advocates, like the parent advocates at your local Family Voices chapter, can also explain the resources available in your area.

7. Meet with a friend. Seeking help doesn't always mean asking someone to do something. Often, what a caregiver needs most is to stay connected with friends and family. But this can be complicated if your child needs you nearby. Ask a good friend to come over to your house after your child has gone to bed for the night. Chat over coffee, a meal, or a movie. Take time to connect with others and laugh, freeing yourself from your usual worries. Support groups, whether online or in person, can also help.

The truth is, most people want to help. If you let your friends, family, and the team of professionals who care for your child know what your child needs, they'll know how to help you feel less overwhelmed. This is something that helps not only you but your entire family.

Review date: October 2021