Raising a child with special needs means many doctor appointments, prescriptions, and school IEP meetings. That's on top of worrying about typical child issues like sleep patterns, diet, and manners. It's a double mental load that never goes away.

By Amy Daniels
September 04, 2020
Advertisement
Courtesy of Amy Daniels

When my daughter, Emily, was 2-and-a-half years old she was inpatient at Children's Hospital Colorado recovering from surgery to debulk a brain tumor. She was diagnosed with a tumor when she was just 7 months old and had already had this type of surgery two times before. She had also endured several rounds of chemotherapy and suffered an infection in her brain from one of the newer types of treatment tried.

As she lay in the hospital crib this time, recovering from both the craniotomy and infection that was raging in her brain, the doctors were hard at work trying to come up with yet another treatment plan to resolve her brain tumor once and for all. To say it was a stressful time would be an understatement. But this wasn't new to us either.

Courtesy of Amy Daniels

We knew she'd be in the hospital for a few weeks, with me sleeping in the chair right next to her crib. And within just a few days of the stay, Emily (in typical defiant toddler fashion) would not go back to sleep after getting awoken by the every two-hour visit from the nurse throughout the night. Exasperated and exhausted, I finally turned on the movie 101 Dalmatians to settle her down. It was 2 a.m., but it worked. She was quiet and drifted off to sleep an hour later, which meant that I could get some much-needed sleep.

The same thing happened the next night. "Puppies movie!" Emily gleefully shouted around the same time as the night before. And then, again, the night after that. I could have been sleeping as she lay in her crib, her face aglow from the movie playing in front of her. Instead, I laid awake worried. On top of everything else I was stressed about, I was also terrified that we were developing horrible sleep habits. Thoughts of getting up in the middle of the night at home in order to watch a Disney movie kept me awake just as much as wondering if there was a new chemotherapy treatment available that would work on my daughter's tumor.

That's the thing of parenting a child with special needs. We must cope with stresses specific to our child's needs, whether it be cognitive, behavioral, physical, medical, or some combination of all of those. (Think keeping up with doctor appointments, prescriptions, equipment needs, and school IEP meetings.) But these extra things we worry about don't mean that the regular burdens of parenting go away. It's like a double mental load that we need to learn to navigate.

Eventually, I quieted the nagging, worrying voice in my head that was accusing me of being a lazy parent by not sticking to our most basic sleep rule—no electronics in the middle of the night. I allowed myself grace. If anyone deserved it at that moment in time, it was Emily and me. But I didn't see that initially. It's hard to shut off the constant knowledge that we moms hold in our head on the best ways to raise our babies, whether they have special needs or not.

Graphic by Caitlin-Marie Miner Ong

A few weeks later, Emily recovered; the doctors found a new treatment plan, and we came home. And guess what? Emily slept through the night without asking to watch a movie. These moments happen day in and day out in the lives of special needs moms. Not only are we expecting our child to endure a doctor's appointment, therapy visit, or uncomfortable social situation, we are expecting them to do so while also following the rules of the typical child. If it's not worrying about their sleeping patterns, it's being concerned about their manners, not creating an entitled child, or making sure they eat a balanced diet. Sometimes there will be bumps in the road and we need to be allowed to not fret over it.

Courtesy of Amy Daniels

My daughter is now 21 years old. I've learned throughout the years of dealing with my daughter's illness, physical disability, and cognitive delay to handle the day-to-day, run-of-the-mill parenting stressors when my time allows. On those days, or weeks, when my child's special needs take the forefront of our lives, I worry about those needs first. And once life settles back down again, I address the sleeping issues, the feeding issues, or whatever regular parenting stress crept up on me that I ignored. As I often say, one panic attack at a time.

Parents.com dives into the mental load—the unseen burden of parenthood and that endless to-do list that makes up caring for children—and how the labor imbalance is impacting families. Read more here.

Comments

Be the first to comment!