The Secret Freedom Of A Special Needs Mom

Confessions of a former approval seeker

Years ago, I was a people-pleasing rock star. The minute you required something of me, I delivered. I fed on your approval and validation. Whether it was getting good grades, succeeding in a job or doing you a favor, if I knew what you wanted, I’d deliver– or knock myself out trying! I didn’t want to just meet expectations—I’d consider it a failure if I didn’t exceed them. Then I became a parent for the first time.

Jack is now a teen, but in late 2002, he was my colicky newborn. I thought all babies behaved like Jack, since he was my first. It wasn’t until his one year check-up that we learned he had special needs.

New mom trial by fire

Like the experience of most first time parents, reality shattered my romantic notions of motherhood. The first months of Jack’s life were, to be blunt, hell. His December birth swaddled me in seasonal darkness, an appropriate backdrop to my postpartum depression.

He slept every other hour at night. I slept when he did in a vain attempt to recharge. How was it possible that I could sleep so much for weeks on end (albeit in 1 hour increments) and still feel like a zombie? The daily 3 hour screaming jags at twilight almost did me in.

I pity the rookie mom I was, as well as my poor baby Jack. However, Jack’s incessant screaming gave me a huge gift. I began the journey of releasing myself from societal expectations placed on mothers. (Of course, dads have their own pressures to deal with, but that’s another story.)

The beginnings of freedom from my own expectations

I remember not buying a bouncy seat for Jack when I was pregnant, thinking myself frugal. I didn’t want to waste money on something he’d quickly outgrow. After 3 weeks of nightly colicky torture, I finally came to my senses. I was this close to a breakdown, so I sent my husband Mike scurrying to Target to get that freaking chair. Jack and I sobbed while Mike valiantly rescued the seat from the clutches of its straight-jacketed packaging. We planted Jack on his new vibrating throne. Suddenly the screaming ceased, and nothing could be heard but the sound of our ragged breathing. For 5 minutes. In a row. Worth every penny.

Time passed and our family expanded with the birth of our second child. When our second started sounding like Crocodile Dundee from watching a lot (too much?) of the Australian kids’ show, The Wiggles (“Mummy, shake a bit FAH-stah!), I didn’t berate myself. By this time, I had 3 years of parenting under my belt. With The Wiggles as the soundtrack to my life, therapists came into our home 18 hours/week to work with Jack. I was too tired to care what those therapists thought of my parental decisions about screen time, or even to judge myself. I knew I was doing the best I could to take care of both kids’ needs and if that involved hearing Captain Feathersword in my sleep, so be it. My feeling of freedom grew.

ALL moms should give themselves a break–but many don’t

I pity the moms with typically developing children who torture themselves with the societal expectations of being a “good mom”. I just read a blog post about how moms do all of extra “hidden work” to make life run smoothly for their families.

The author mom stays up late regularly to buy groceries, make lunches and do laundry. Or she drives to the gas station at 10 p.m. to vacuum out her car. By day she puts summer clothes in drawers to make room for winter clothes, runs to the store multiple times for gifts or for purchasing her husband’s work pants. She caters to different family members’ culinary preferences at mealtimes. It seems like she expects it’s her job to take these burdens solely upon herself. I am baffled and horrified.

It’s one thing if you are a single parent. Then you have no choice but to do it all. And I can only imagine how relentless parenting would be in that situation. Of course the overwhelming demands of working and taking care of your children would lead to exhaustion. I get that. But what I don’t understand is why some moms with able-bodied live-in partners continuously disregard their own needs (like sleep) to single-handedly cater to their “typical” families 24/7?

The world won’t end if the car floor has crumbs

If I were the author of that post and unwilling to divide household labors with my husband and typically developing children, I’d at least rethink my priorities. Car vacuuming would be the first thing to go! I’d stock up on gift cards for efficiency. Jam the winter and summer clothes into one drawer (and rethink how much stuff the kids needed in the first place!). Cook one dinner and have lots of leftovers that everyone ate, like it or not.

I mean no disrespect or disparagement to that mom, who bravely shared her story. For all I know, that story could have been mine, had Jack developed typically. I just want to tell her to give herself a break. The world won’t end if the car floor has crumbs.

Rethink priorities

Unlike that mom, I can’t do everything and I wouldn’t want to, anyway. By necessity, I ruthlessly order my priorities and discard anything unnecessary. For me, “mom perfection” went out the window the moment Jack’s newborn self came screaming on the scene.

I used to worry about what people thought. Now, it’s far less of a concern. I prioritize myself equally with my family and everything else comes second. As a special needs mom, I must. If I didn’t, my family would be living with a resentful, depressed and bitter martyr. And what sort of example would that be for my typically developing child?

Living our best lives

I live in the land of “good enough” and I feel no shame. I urge all of you to join me. We have the additional work of caring for children with challenges that other moms don’t, for better and for worse. Let’s show all moms there is a better way to live, by taking care of ourselves and managing our own expectations. Let’s view our difficulties as an opportunity to reevaluate what’s necessary. My difficulties provide me an escape from just blindly conforming to “mom norms.” How liberating it is to have more control–and freedom– than we think.

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