When my daughter was diagnosed with developmental delays, I fell backward into grief, even as I furiously crossed off action items on a to-do list that rarely included self-care. My seemingly unstoppable tears provided me with something I desperately needed, though: Because it’s hard to talk to learning specialists while sobbing, I carved out time to write my way out of my grief avalanche. Taking the time and space to process my own emotions ultimately helped me summon the strength I needed to help my daughter on her own journey.
Five years past that first diagnosis, being a parent of a child whose different learning needs often take extra attention and parenting fuel has taught me that caring for myself must be no. 1 on my to-do list.
Although the term “special needs” refers to a broad category of developmental and learning needs and issues, there is an inherent commonality: Parents of children with such needs experience extra stress.
“Research has shown that parents of children with developmental, medical or behavioral needs often experience high levels of stress related to raising their child with special needs,” says Mandi Silverman, Psy.D., a clinical psychologist at the ADHD and Disruptive Behavior Disorders Center at the Child Mind Institute in New York City. That additional psychological and physical stress can extend to the whole family, Silverman says.
While it might seem obvious that self-care is essential — all we need to do is think of the airline adage to put on our own oxygen mask first — many parents, in fact, put themselves last until their health becomes impossible to ignore.
Often there is finally a moment when parents realize putting themselves last isn’t going to work. “I wasn’t parenting the way I wanted to parent, and I had to learn that I have the right and responsibility to love and take care of myself first,” says Seattleite Heidi Stuber, a single mom of a 10-year-old boy with high-functioning autism spectrum disorder (ASD).
Writer and life coach Heather Plett believes all parenting necessitates caring for your primary vehicle: yourself. “If you don’t want to find yourself stranded and broken down at the side of the road on one of the most challenging journeys of your life, you’d better take good care of yourself,” says Plett, who wrote a blog on self-care that has been read by a half million people.
Just as every child with special needs is different, every parent has their own route to self-care. Still, there are road maps to this destination. Here are five strategies that can be used as a guide to caring for yourself well enough to parent a child who needs you to be as calm as you can be.
If you don’t want to find yourself stranded and broken down at the side of the road on one of the most challenging journeys of your life, you’d better take good care of yourself.
1. Daily ‘me’ time: 15–30 minutes
“Carve out even just 15 minutes every day or so to do something that is relaxing. Whether it’s reading a magazine, having a cup of favorite coffee [or] tea or talking on the phone to a friend, it’s super important that parents have a ‘me moment’ in order to recharge, reset and rally for the next challenges,” Silverman says.
Although this sounds simple, many parents of children with special needs are constantly on duty. On the days Stuber doesn’t have a babysitter scheduled or her son doesn’t have school or camp, she calls one of two families who welcome her son for playdates, which she must attend, too. This time with her son’s friend’s parents gives her one version of “me” time.
Plett recommends starting with a few simple pauses. “Imagine pauses as gas station fill-ups on your parenting road trip. Take a detour through the park on your drive home. Pick up a book while supper is cooking. Pour a glass of wine once the kids are in bed. Take a bubble bath when everyone is otherwise engaged. Or simply stop what you’re doing for a mindful minute and look around you and notice color, shapes, beauty, sound, etc. These intentional short pauses will begin to replenish your energy,” she says.
2. Embrace movement: Exercise works
“With exercise, you cross a lot of bases: It’s good for your body, you improve your mood, your cognitive efficiency increases, your sense of well-being increases, and you feel more in charge of yourself. I tell my clients to put a pair of sneakers in their car and after dropping your child at therapy, go on a walk, says Rita Eichenstein, Ph.D., author of Not What I Expected: Help and Hope for Families of Atypical Children.
Leslie Rorty, a Seattle parent of a 17-year-old with global developmental delays, became a master swimmer before her son’s birth. “I had respite care, a supportive husband and three other children who have always been very good with him, but I needed to make sure I was strong, because parenting him is physical. Luckily, I had swimming to call on,” Rorty says.
Parent Jacque Dietrichson recalls her decision to become a runner. Three of her four children have autism. Her husband’s schedule as a firefighter (on duty for 24 hours at a time) and her Virginia locale, far from supportive Washington, D.C., family and friends, did not help matters. When her children were all 7 and younger (they are now in their teens), she received a flyer in the mail about a Disney half-marathon. “I started on a treadmill, working my way to running behind a double stroller when the older two were in school. Soon, I saw how much of a better mom I was when I had that stress relief,” Dietrichson says. She’s run two full- and six or seven half-marathons, and added weight lifting and triathlons to her list of activities.
3. Find your tribe
When you have a child with special needs, says Eichenstein, “you might no longer feel comfortable in social relationships you used to love. My advice is to find a meaningful group of friends that can support you where you are at now.”
Seattleite Jen Maher, who has an 11-year-old son with autism, found a good friend through her involvement with Seattle Children’s Autism Center Guild. “We both have boys that are tough. I take her boy to spend the night, and she takes mine. It was really rough those first few years, but time and support from friends in the same boat as you helps,” Maher says.
Rorty found a supportive group of friends when her son attended preschool at the Boyer Children’s Clinic. “We meet and discuss our lives maybe four times a year now [that their kids are older]. And whenever one of us has a question or need, we email and help each other out,” she says.
Seattle-area parent Rachel Katz Cary, whose 10-year-old son has ADHD and is a twice-exceptional student, believes community holds us up like the “light as a feather, stiff as a board” slumber party game. “If every friend puts two fingers underneath the person, everyone can lift that person up. Having everyone lift what they can sure takes the pressure off of parenting a high-needs kid,” she says. To that end, she has hosted Friday-night community dinners that have helped support, maintain and nourish community.
While we all wish friendships would randomly show up, being intentional is often necessary. “One of the things I’ve learned about finding my tribe is that the more authentic I am, the more I attract authentic friendships,” Plett says. “Find places where people are talking about things that matter to you and open up about something close to your heart. If people don’t respond, they’re probably not your tribe. Don’t take it personally. It’s probably their own fear of vulnerability and has nothing to do with you.”
Always try again, Plett says. “Sometimes it takes a few false starts before you find the right friend.”
Jorja White says there is no quiet place in her house as long as her daughter Mari-Helen is awake. While Mari-Helen, 15, has never been given a specific diagnosis, her cognitive abilities place her around age 2 or 3. “I need to have a life and I’m incredibly independent. Having a supportive spouse means I can travel, and that’s been important for me as a parent. My tendency is to always meet the needs of others first, but time away allows me to meet my needs so I don’t fall apart,” says White, who lives in Birmingham.4. Time away
For caregivers, respite care is sometimes what it takes to get time away. Locally, some parents can receive respite care through the Washington State Department of Social and Health Services. King County also offers Mental Health Wraparound Services for any child up to age 21 experiencing a severe emotional and/or behavioral disturbance. This coordinated planning process assists families in creating an individualized care plan that allows respite time for parents. A Seattle-area nonprofit called Caregifted grants vacations to people who have spent 10 or more years caring for a family member full-time.
Life coach Annie Fitzgerald, who has a 15-year-old daughter with severe anxiety and chronic pain disease, believes vacations are vital. “I say this under the guise of privilege, but to achieve wellness, you need to go away until you miss your kid, and then you need to stay two days longer,” says Fitzgerald, who lives in Seattle.
Parents often talk about coming to a place of acceptance with their child’s diagnosis. “With autism, it doesn’t really end when they get out of school. Even though my three children are pretty high-functioning, I don’t know the future. I have tried every therapy and every diet, and none of them were the salvation. I’ve been a Christian all my life and it was a struggle to let go of [the idea of fixing my children], but I have let go,” Dietrichson says. “My job is to help them function in this world, helping my square pegs fit into round holes.”
Some parents turn to therapy to help find acceptance or to help ease depression and anxiety. “We are designed to be verbal communication machines, and talk therapy works,” Eichenstein says.
White says her level of acceptance definitely depends on the day’s mood, but she also sees parenting Mari-Helen as part of her spiritual journey. “I embrace the Buddhist idea of not viewing suffering or difficulties as abnormal. When I think of the fact that Mari-Helen is always going to be the way she is now, it takes my breath away, so I try to live in the present, not focus on the long haul. I know it’s just a matter of she’s mine and I’m hers, and we will figure it out.”
Of course, it’s precisely because parenting children who have special needs is a long journey that Silverman recommends reevaluating self-care tactics once every season. “It’s important for parents to periodically take a self-assessment and ask themselves what they need, what aren’t they getting, what are they currently appreciative of, and who they need to talk to in order to get more answers. As time goes on, our needs and strength change,” she says.
Or, as Stuber says, “When I’m at the end of my rope, it’s time to build more rope.”
I’ve learned to sit down at my writing desk and type away until my frustration or grief has waned. I text friends until I find support. Sometimes I listen to my meditation app (aptly called Headspace). And if all else fails, my legs haven’t failed me yet: I walk or bike my way to a place where I can breathe deeply again. Five years in is long enough to know that taking care of me matters.