Support for Parents of Kids With Special Needs

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

But if you’re a parent of a child who is sick or has special needs, your schedule likely involves doctor’s visits, therapy sessions, and waiting for doctors and insurance companies to return your phone calls. And then there’s the exhaustion and endless worry.

What you need is help. But how can you get it? Here are six suggestions for making your life a little less complicated.

1. Accept help from friends and family. Everyone’s busy and that makes it hard to ask for or accept help. For some, it’s difficult to let your kids or partner help because they may not do things the same way you do them. Or maybe letting other people know you feel stressed or overwhelmed is just not your style. After all, parents are expected to be good at multitasking and juggling their kids’ and their own needs.

   If you feel exhausted and angry and have accepted that you need help, asking for it is the next step. Turning to others isn’t a sign of a weakness but rather one of strength. Recharging your batteries once in a while can help you be a better parent, partner, and person.

2. Be honest about what you need. By letting people know how hard your situation is, you’re allowing them entry into 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.
3. 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 is already picking up his or her own kids. Ask grandparents and siblings to do things they enjoy, whether it’s watching your child give you a break or cooking freezer-ready meals.

   In this day and age, social media can ease the burden of asking. Post your needs on your personal social media page or register on one of the many caregiver websites that allow you to create a list of your needs (for example, dinner twice a week, the lawn mowed weekly, a companion for hospital visits) so friends can sign up for duties that best fit their skills and schedules.

4. Enlist other caregivers. Parents of children with special needs often feel that they are the only ones who can handle their child’s care. This is certainly true to an extent 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, regardless of overall health.

   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.

5. 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 are also available for children with 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.
6. Seek companionship. 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, however, 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 burden shouldn’t be on you to make it easier for someone to help you. You have enough on your plate. Besides, most people want to help. If you let your friends or family know what you need, they will know how to help you and feel less burdened — and that’s not just good for you, but for your whole family.