Most parents have felt the kind of exhaustion that won’t go away with a little “self-care”—a manicure, hot bath or massage—or a good night’s sleep or two. But if you’re a parent of a child with special needs, that exhaustion can be relentless.
“When parenting a child with special needs, there are no vacation days of off-switches,” writes Jenn Jones at Scary Mommy. “Raising my child, who has half-a-dozen diagnoses, requires constant attention, awareness, energy, flexibility, dedication, and patience.”
As children with special needs get older, their needs evolve, and their parents must evolve, too.
“When I climb into bed at night, I both thank God that I get to be my child’s mother, but I also recognize the epic depletion.” While there’s “freedom in speaking your parental truth,” says Jones, doing so comes with a cost: judgement and inappropriate responses—even if those responses are well-intended.
What you need is…
While taking a vacation or even a catnap might sound like reasonable solutions, they are often impossibilities for parents of kids with special needs. First there’s the challenge of finding childcare.
“If I’m not caring for my child, who will be?” asks Jones. “I’m pretty sure it won’t be the person who flippantly tells me to just chill out with a fruity drink, poolside, in a tropical location a few thousand miles from home.”
Not only do parents of kids with special needs have to work “every moment of every single day” for their children, she says, but they also have to fight stereotypes and combat judgements.
“Why don’t we just discipline our kids more or better? Have we tried essential oils, supplements, chiropractic care, prescription medications, therapy, a special diet? Perhaps we just need to put out more positive vibes into the universe or pray harder, asking God to heal our children?”
Jones says if parents of kids with special needs could “just whisper a prayer, rub a little oil on our kid’s wrist, or avoid sugary foods forever, resulting in our child being healed, we would do it in a heartbeat.” But that’s not how special needs works.
“And frankly, defending our parenting to all the know-it-alls out there is only further exhausting us,” she adds. “We don’t need advice, pity, or criticism. We just need support.”
To that end, this issue features Yvonne Blomer’s “Special Needs Families & the Pandemic,” outlining six of the struggles that special needs families have faced since the start of the pandemic. Also featured is Dr. Darla Clayton’s “20 Things Parents of Special Needs Should Hear.”
“I need a lot more ‘go, Mama’ cheers,” says Jones, “and a lot less of the outside-looking-in criticism.”
Here’s to helping each other out and being part of the cheering section.