How to Give Yourself Grace as a Special Needs Parent

You know the old adage, “life is a marathon, not a sprint.” For parents like us though, life is a marathon AND a sprint, often with no water breaks.

Relentless.

Despite our best intentions, we end our days feeling as if nothing we set out to accomplish got done. It’s not for lack of trying! Here’s the thing: the normal that we’ve grown so accustomed to is nothing like that of our parent peers. 

Instead of looking at what’s not checked off of the To-Do List, look back at what you DID do. It’s probably more than most.

Case in point: this very article is past due. I take deadlines seriously. But the stomach bug has been working its way through my family. First, my 9-year-old, then me, and then, while I was still recovering, my 14-year-old. Most teenagers are fairly self-sufficient when throwing up.

Not my guy. So even though I had plenty of time built into my week to finish this and all the other things, that time was spent caregiving, and steam cleaning, and being very sick myself. We’re never doing enough, because there is just too much demanded of us.

Think about it. 

Most parents aren’t interrupted at work by near-daily calls from the school nurse because their child with ADHD has an anxiety-induced stomach ache. Most parents don’t have an entire closet dedicated to medical supplies. Most parents don’t know what encopresis is or the emotional impact conditions like that have on the entire family.

Most parents don’t exclusively wear running shoes or have a sophisticated security system to manage their child’s elopement. Most parents aren’t taking their child to multiple specialists on monthly and quarterly bases.

Most parents don’t have the mounds of paperwork that comes with those medical appointments, IEPs, 504s, care plans, waivers, Medicaid, SSI, et cetera, et cetera, etc. Most people have no comprehension of what a typical day looks like for parents like us, let alone a tough one.

“Caring for a child with a disability and severe medical issues means that we compassionately plan around her wellness, and we sometimes miss out on certain types of outings or vacations together …

As a parent, one of the most challenging experiences is witnessing two of your children flourish in typical ways while the third must continually adjust her expectations for her future,” says Kristen O’Sullivan, program specialist for T/TAC at VCU’s Partnership for People with Disabilities and parent of three children, ages 24, 22, and 19.

Our stressors don’t go away if our child leaves the nest. “Although my kids have flown the coop and are paying their own bills and living independently, as a parent, you can’t stop worrying.

I’m so proud of my son who has overcome so much and now lives as an independent adult. But I worry about loneliness and making friends with people who will take advantage of him.

In high school, he had ‘friends’ who always wanted to go out to eat, but never had any money. Since he had a job, he ended up paying for them, and they were using him.

Of all of the things that kids learn in school, maintaining healthy relationships and having trustworthy friendships is so much more important in the long run than any test score.

I wonder if parents of nondisabled kids have those same concerns,” shared one parent who asked to remain anonymous.

We need to stop, slow down, and give ourselves the grace we deserve and desperately need.

Even the U.S. Surgeon General is telling us so. Dr. Vivek H. Murthy issued an advisory earlier this year putting the health risk of modern parental stress on par with cigarettes, social media, and AIDS.

According to the report, when stress is severe or prolonged, it can have damaging effects; “41% of parents say that most days they are so stressed they cannot function and 48% say that most days their stress is completely overwhelming compared to other adults (20% and 26%, respectively).”

And those numbers reflect most parents. While the report did not list specific statistics reflecting parents of children with disabilities (disability is used only twice in the 36 page document), it does point out that nearly one in five children in the United States have a special health care need.

And that health and social service systems and professionals need to recognize parents and caregivers who are at a higher risk for mental health conditions, which includes parents of children with special health care needs.

So what are parent/caregiver hybrids like ourselves supposed to do? 

SELF-CARE! 

WAIT!!!

Don’t stop reading! 

We’re all skeptical about self-care, and we should be. The term’s been hijacked and commercialized by influencers. But in its purest form, self-care is essential. Self-care, according to the World Health Organization, “is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health worker.”

O’Sullivan’s take on self-care is, “Embracing psychological flexibility and a dash of creativity can make a world of difference.”

“UGH! Even the phrase ‘self-care’ is an eye roll for me,” Molly Dellinger-Wray, a positive behavior support and health relationships specialist at the Partnership for People with Disabilities, told me.

Molly, who’s also the parent of two adult children who live independently, added, “When we are ‘in the weeds’ of family life, this can be extremely challenging. But to quote an old Carly Simon song, ‘these are the good old days.’

Sometimes it’s very challenging, but finding an activity that you and your child or children BOTH like to do together is a kind of self-care. I think being mindful and appreciative of anything good that happens is a kind of self-care (and I don’t mean a gratitude list. PLEEZE).

The smell of your child’s hair. The songs playing in the car as you drive somewhere. The pleasure of fixing a meal that is someone’s favorite or cooking together. Watching a sporting event together. Taking the dog for a walk and noticing the holiday lights. And you might remember it longer than you would any yoga class.”

Kayla Diggs Brody likes to play games from the New York Times like Strands, Tiles, or simple word search to help her brain refocus.

The project director and co-health content leader at the Partnership for People with Disabilities and mother to a 3-year-old also swears by Mario Badescu Facial Spray, she takes a few minutes to use the spray which “comes in different fragrances that smell great and make me feel refreshed.”

If the idea of self-care seems too daunting, try to give yourself some self-care snacks like Kayla’s lotion routine; just takes 5 or 10 minutes.

Some easy examples: shower, cut your nails, make an appointment for YOUR well visit, do squats, stretches, and chair push ups in the waiting room, finally reply to that email, call a friend, pay your bills, clean out one drawer, stroll around the block. Just do something for you. 

Or, as much as it pains you, miss that deadline. Especially if it means being able to be present and calm for the people that mean the most to you; which includes you.

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This post originally appeared on our November/December 2024 Magazine