“The problem with people like you is getting you to take care of yourself.”
That was my physical therapist. He meant it in a good-natured way. But the statement echoed through my brain as I drove home.
Though I had been to probably hundreds of physical therapy appointments in the last decade for my twins, this was the first one I had been to for myself. As my non-ambulatory son approaches 70 pounds, my back is no longer up to the challenge without professional help.
As the primary caregiver to children with extraordinary needs, their care needs always seem to feel more urgent. Many times, I have realized that even what I chose to do for my “self-care” was actually about reinvesting in my ability to be a better caregiver. Physical exercise, psychotherapy, this newsletter — all of these things I do in my free time are centered around my need and desire to perform caregiving tasks at a higher level. And that is part of the advantage of self-care: Taking that time avoids burnout and helps us better support our children and ourselves.
In honor of the first week of 2023 and the time of the year when people tend to focus their efforts on self-improvement, let’s talk about how we as parents to disabled children can take the time and space we deserve for ourselves.
I’ll add a caveat that the need for self-care does not excuse the need for community care. As I talk about a great deal on Medical Motherhood, American society and policymakers can and should do better to create a world where disabled children and their caregivers can survive and thrive.
But at its core, self-care is about reconnecting with yourself and your own needs. Nobody can do that for you but you.
To help you prioritize the time and energy it takes to do self-care, let’s establish why it is necessary. Research bears out the idea that caregiving to children with disabilities is more stressful than typical parenting, and that the number of parents affected is growing. As reads a 2009 review of the needs of caregivers to medically fragile children:
“With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health.”
And, in contrast to children with medical challenges, some studies have found that behavioral challenges are even more closely associated with parental stress, and its related impact on health. For example, parents of children with the wide-ranging diagnosis of cerebral palsy reported higher stress levels and lower self-confidence when the child with CP also had behavioral health needs. In another study, parents of autistic children reported higher rates of depressive symptoms than parents of children with other diagnoses.
So given that these phenomena are well-established, it was surprising that I could not find much in the way of research on effective self-care strategies for parents to disabled children generally. But I did find a 2020 study that focused on parents of children with fetal alcohol syndrome, which compiled a lot of great information on the under-researched topic. The researchers found that these (mostly adoptive) parents faced numerous obstacles to self-care, but that the more confident a parent felt in their ability to achieve this respite, the better they felt about their parenting.
“Stress reduction is important for all parents,” wrote the researchers. “But stress reduction interventions may be especially critical in caregivers of children with special needs given their documented high stress levels.”
Some policymakers and others might think that the answer is more “services.” For a long time I, too, thought that if I could just get to the end of the rainbow of promised “services” that that would reduce my stress. But I discovered that government services like school and in-home caregiver hours, while they can be of limited help, came with their own set of stressors. The researchers, too, found that more direct methods of stress reduction were more effective: “Though standard services such as respite care and case management may slightly reduce stress, targeted stress-reduction interventions have a larger effect on parental stress-reduction…,” they wrote.
Helpfully, these folks identified four buckets of self-care interventions:
Mindfulness (being alone, going outside, prayer)
Being with others (social outings, support groups)
Therapy (Acceptance and Commitment Therapy was called out as particularly effective for this population)
Physical Exercise (yoga, walking/running, weight-lifting)
They also identified the barriers to self-care — what got in the way of parents being able to do these basics.
“Lack of time was by far the most common obstacle reported,” reads the study, “with lack of financial resources also frequent. Many parents also noted that not having child-care, especially child-care that is equipped to handle the needs of their children, was an obstacle to self-care.”
Time and money. No surprise there!
I remember people telling me at the beginning of my twins’ lives that this life is a marathon and not a sprint. I didn’t know what that meant. But with a decade of caregiving behind me and who knows how many decades ahead of me, here’s what I’ve learned about self-care:
Pick a small, achievable goal. I grew up in TrackTown, USA, otherwise known as Eugene, Oregon, the literal birthplace of NIKE. I’ve always been surrounded by runners and joggers so I thought that’s what I had to do to be “fit.” But it turns out that running is too high-impact for the particular body that I own and brisk walking is just as beneficial. Released from my false notion of fitness, I have a wonderful new tool for self-care. Which leads me to…
Each person is an individual and each moment is only a point in time. If self-care for you looks like kickboxing rather than a bubble bath, do that. If normally you’d enjoy going out with friends but you’re just not feeling it tonight, go get a drink by yourself instead. Self-care is ultimately about feeling the freedom to do what it is that YOU want to do and it’s counterproductive to “should” all over yourself.
Eat for physical health; exercise for mental health. OK, maybe this violates the rule above, but personally I lost 25 pounds and achieved greater self-assuredness when I adopted this motto. Eat plenty of low glycemic index foods when you have the willpower to do so. The more you do, the more you will like them. Exercise will help you keep on track mentally, which also cuts down on reaching for the junk food for comfort.
Prioritize sleep. I know more than anyone how this is much easier said than done, but… try.
Knowing how difficult it was for me to get out of the house for the hour-long appointment, my physical therapist gave me several simple exercises to do at home. But, I was rarely able to keep up the routine.
Three months ago, though, I found a full-body exercise class. The appeal of being able to leave my house once a week for an hour turned out to actually be the ticket to progress. Motivation and linked rewards come in all stripes.
When it comes to self-care, we often have to focus on our why before we determine our what. Take the time to puzzle it out. You deserve to put you first.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From CNBC.com: “Congress’ lame duck session leaves ‘unfinished business’ on issues that address Americans’ everyday financial needs”
[…]Supplemental Security Income, a federal program that provides benefits to the elderly, blind and disabled, turned 50 this year.
Yet many of the program’s rules have not been updated for decades.
A bipartisan bill from two senators from Ohio — [Democrat Sherrod] Brown and Republican Rob Portman — would raise the asset limits for beneficiaries to $10,000 for individuals and $20,000 for couples, while also indexing them for inflation.
That proposal did not make the cut in year-end legislation despite high hopes from advocates.
[…] The fate of the proposal is unclear since Portman is retiring this year and it remains to be seen whether another Republican leader will step up to support it, [Shai Akabas, director of economic policy at the Bipartisan Policy Center,] said.
“It’s going to probably be some time before that gets another opportunity,” Akabas said. […]
• From The Washington Post: “Judy Woodruff on how her son with disabilities changed her view of health care”
Last month, TV anchor Judy Woodruff had some news of her own: She is stepping down from “PBS NewsHour” on Friday, Dec. 30.
[Woodruff will continue to report, though, and has a special focus on issues in the disabled community. Her son, Jeff, had mild spina bifida before a failed shunt replacement left him with much more serious disabilities.]
“I thought I was sensitive and compassionate before Jeff was injured,” Woodruff says. “But I found that there’s just a whole other level of what he was experiencing that affected me profoundly.” As a parent and caregiver, “you suddenly belong to this community that you never knew you were going to be part of, and none of us probably wanted to be there.”
[…]As parents, she and [fellow journalist] Al [Hunt] were lucky to have the flexibility and financial resources to give Jeffrey whatever was required. As journalists, they experienced an intimate look at America’s health-care system.
“It makes you appreciative of how difficult and expensive a serious health issue is,” Al says. “It used to infuriate me when politicians would talk about how good the current health-care-delivery system was. They never went through the hell of not being about to afford the best care.”
[…]Over the next two years, Woodruff says, she plans to do more segments on disability in America, with a special interest in the lack of resources for adults living with disabilities. It is an issue that cuts across politics, demographics and party lines; she hopes she can bring her personal experience to the stories and help restore some of the country’s broken trust in the media. […]
• From North Country Public Radio (New York): “For disabled children of military parents, frequent moves can lead to schooling and health care gaps”
[…]Advocates say military families with disabled children often face problems […] when they move from place to place. Their new district or state might not offer the same services as their old one.
“It’s a very difficult system to navigate, especially when it comes down to the school district level,” said Jackie Nowicki, a researcher with the Government Accountability Office who has studied the programs the Defense Department offers to families with children in special education.
Though initiatives like the School Liaison Program and the Exceptional Family Member Program exist to support families with medical and educational transitions, the Defense Department is limited in what it can do to help families with special education disputes. There is no statutory role for the department in determining a child’s eligibility for special education services. That’s mostly up to the Department of Education, states, and school districts.
“The way the law is designed, they're provided latitude in defining disability categories and setting eligibility criteria. That results in unevenness or variation,” Nowicki added.
Frequent moves — a staple of military life — add to the problem.
“It's not as though our experiences in the military community are different from the experiences of our civilian counterparts in special education. It's just that we experience them more frequently because of the highly mobile military lifestyle,” said Jennifer Barnhill, lead researcher with Partners in Promise, a nonprofit organization that provides special education resources to military families.
Disabled children are evaluated to determine the kinds of support they need. But when they move, their new school districts often start that process from scratch. It takes, on average, 171 days for them to do new evaluations, according to a survey Partners in Promise did last year. The Individuals with Disabilities Education Act, or IDEA, requires school districts to conduct evaluations within 60 days.
Delayed evaluations mean students have to wait longer for services.[…]
Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!
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Self-care: How to and why