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There’s a saying, “You can’t pour from an empty cup.” For families who have children with disabilities or special health care needs, it means that you can’t take care of your child with a disability if you’re not taking care of yourself. Asking for help and recognizing the things that you need to sustain yourself are difficult but ignoring your own mental or physical health is not a good option for you or your family.

At the 2022 Circles of Life Conference, a panel of family members shared their ideas on finding thinking creatively about caring for the caregivers. The moderator for this dynamic group was Robin Schnitzler, a marriage and family therapist, who is also the parent of a child with special needs.


Watch the Full Panel Recording:

Self-Care: A Panel of Parents and Family Members


Taking Care of Yourself

The family members discussed their individual journeys learning the importance of self-care. They found that it’s not as expensive or indulgent as it seems. They shared some simple, inexpensive ideas that made a big difference in their lives:

  • Take a long hot shower
  • Sleep in late
  • Get out into nature (even 5 minutes)
  • Walk your dog
  • Talk with friendsꟷin-person or video chat
  • Spend time with your spouse
  • Fit in a workout

Time away from your family to take a class, join a group, volunteer or pursue your own interests may be the best form of self-care for you. It’s a way to remember who you are outside of your caregiving duties. One parent said, “It also helps my child realize he can depend on someone else.”

Asking for Help

This panel agreed that one of the most important pieces of self-care is asking for help. This isn’t easy since we want to do it all: take care of our families, be dependable and strong. But the stress that comes with this can wear you down. Knowing that it’s okay to take a breakꟷeven for a few minutesꟷis essential to your mental health. “It’s not in my DNA to ask for help,” one parent said, “but I’ve had to learn to ask and not feel bad about it.”

“I’m out” or “I’m going to the grocery store,” are cues these panelists came up with to let their families know that they need a break. One mom explained that, at times, she just needed to let go and know that her family would be okay. The group joked that, “The sun will set and will rise again tomorrow…And there is a reason for 911.”


Self-Care Might be What We Don’t Do

Saying NO to one more therapy appointment, another school event or volunteer request may be the best way to show yourself a little love!


You Need This

Your self-care journey needs to be in your belief system. You need to make it part of your life and believe that you deserve it. For many of us, it’s not easy. It means recognizing that you need help and time for yourself. One family member expressed it as a realization, “I try to teach my kids that they can ask for time and the space they need to cool down, but I need that too.” You may also need to take some time to figure out your needs and how to structure your life to make caring for yourself a priority.

Connect with Others

Family members talked about connecting with other parents who get it and spending time with friends. “I didn’t do that when my kids were younger or I’d worry the whole time about what was happening at home, but now I know the time with friends is so important.” Think of this as finding your people. It might be a formal support group, a family camp for kids with autism or more informal connections. Knowing that you have other caregivers who support you and will be there by your side is reassuring and energizing.

Tools, Resources and More Ideas

From buying fresh flowers or balloons to taking turns sleeping in on weekends, these family members talked about the little ways they found to care for themselves. Others mentioned learning yoga, getting a treadmill or walking outside on a cool day. These are all great ways to clear your head and feel good about yourself. Other helpful tools include phone apps like “Headspace,” podcasts and books like The Fear Cure and The Untethered Soul. You might also find keeping a journal or writing letters to yourself to be a good way to deal with stress.

For many families, it’s finding what works for you and not feeling bad or selfish for taking the time to do what you need. One mom said she learned to “listen to her inside voice” and not wait until there was a crisis.

Your Children’s Long-Term Support Waiver Can Help

Your Children’s Long-Term Support (CLTS) service coordinator is a great resource for the whole family. They know about activities like low-cost nights at hotels or resorts, discounted tickets to fun events, support groups, respite and other ways you can take care of your own health and well-being. One mom said having her service coordinator ask how she’s doing and being someone she can call when times are tough, makes a difference in her outlook.

Ideas from Families

  • “I can’t always control how my son will act or how his day will go, so I take control of the time I can. Once a quarter, I take the afternoon off from work and take a few hours for myself.”
  • “I rely on respite and my family to get out for walks. Know that it’s okay to ask family members for a few minutes.”
  • “Taking a detour to work if it was an especially rough morning can help.”
  • “Sometimes, I sit in the parking lot or go to Target. That time to clear your head and have a few minutes to yourself makes a difference.”

The message from this family panel is that taking care of yourself needs to be part of your everyday life. Once you learn that you need that time and space, that you deserve a break, and that you can ask for help when you need it, you will be a better caregiver for your child.

 

 

 

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