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Getting Support When Your Child Has Special Health Care Needs

Apoyo para padres de niños con necesidades sanitarias especiales

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

But if you're a parent of a child who is sick or has a disability, your schedule likely also includes doctor's visits, therapy sessions, and waiting for doctors and insurance companies to call you back.

What you need is help. But how can you get it? Here are ways to make things run more smoothly.

Accept help from friends and family. Everyone's busy and that makes it hard to ask for or accept help. It may be hard to let the kids or a partner help because things may not be done the way you do them. Or maybe letting other people know you feel stressed is just not your style. After all, parents are expected to be good at multitasking and juggling everyone’s needs. But you’re not superhuman. Turning to others is a sign of strength, not weakness. Recharging your batteries once in a while can help you be a better parent, partner, and person. So go ahead and say “yes” to that friend or loved one.
Be honest about what you need. By letting people know about your situation, you're allowing them to enter your world. When you say, "Going to the hospital by myself is hard," you're giving a friend a chance to say, "Let me come with you." When you say it's sometimes hard to get dinner on the table, your loved one knows that delivery of a warm meal will be greatly appreciated.
Create a list of needs. How many times have you heard someone say, "Let me know if I can do anything." And how many times have you said, "I will" — and then didn't? People want to help but they don't know how. Make a list of the things that would make your life easier. Then, match the task with the friend who'd have the easiest time helping you out. Do you need help picking up your other kids from school? Ask a neighbor who's already picking up their own kids. Ask grandparents and siblings to do things they enjoy, whether it's watching your child to give you a break or cooking freezer-ready meals. Use social media to ease the burden of asking. Post your needs on your personal social media page or register on one of the many caregiver websites. These sites let you create a list of needs (for example, dinner twice a week, the lawn mowed weekly, a companion for hospital visits) so friends can sign up for tasks that best fit their skills and schedules.
Enlist other caregivers. Parents of children with disabilities often feel that they're the only ones who can handle their child's care. But that doesn't mean that you can't get away for a few hours every now and then. By leaving your child with a trusted sitter or family member, you are teaching your child to handle change. Your child will develop the resilience and adaptability that every kid deserves to learn.

To ensure the person helping you is up to the task, consider caregiver training. Many hospitals and state social service agencies provide classes for siblings, parents, grandparents, teachers, and babysitters.
Consider home health care. Some insurance companies will cover the cost of an in-home health aide or visiting nurse for a few hours a week if your child's medical problems are chronic or severe. Call your benefits provider to see if you are eligible. Respite services also may be available for children with disabilities or developmental disorders, including autism. These services can include a caregiver coming to your home to give you a break for a few hours or overnight, or a drop-off program in the community.
Turn to the experts. Talk to a social worker on your child’s care team. Social workers can tell you about local services and support in your area that can help take the burden off you (and your bank account). This includes respite care, government benefits, and financial support. Social workers also help with emotional support and can help you find ways to practice self-care. Family advocates, such as parent advocates at your local Family Voices chapter, can also tell you what resources are available.
Hang with a friend. Seeking help doesn't always mean asking someone to do something. Often what a caregiver needs most is to maintain contact with friends and family. That can be hard when your kids need you close by. So ask a friend to come over after the kids go to bed. Talk over a pot of coffee, share a meal, or watch a movie. Take time to connect and laugh with others and free yourself from your usual worries. Support groups, both online and in-person, can be helpful too.

The truth is that most people want to help. If you let your friends, family, and your care team know just what you need, they can help you carry the load — and that's not just good for you, but for your whole family.

Reviewed by: Carolyn Sewell-Roberts, LCSW

Date reviewed: October 2021

Getting Support When Your Child Has Special Health Care Needs

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