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Columns

The Modern Domestic Woman in Batavia: Finding strength in parenting kids with 'extra' needs

Elizabeth Rago
Elizabeth Rago

Talk of mothering doesn’t always surface in this column and there’s a reason for that exclusion. Mostly because my own children make up so much of my life that The Modern Domestic Woman community has always been an oasis sans kiddos that I retreat to in order to lighten the load of my everyday chaos.

I don’t apologize for that. In fact, I think it’s healthy to explore areas of you that do not involve your kids. You don’t love them any less, you’re simply savoring the tiny fleck of you that once was before them.

Many of us are mothers and a good chunk of us are parenting kiddos with “extra” needs. I’m here to tell you that I see you and I’m riding the crazy wave of intense feelings and a roller coaster of emotions right along with you.

We don’t have to single out one certain diagnosis, which is why I refer to them as kids with “extra additional” needs. “Extra additional” seems a bit redundant, except it made complete sense when I saw it on a menu at a Chinese restaurant I frequented 20 years ago. What was meant as “sides” or “add-ons” to main dishes was listed as “extra additional,” and when I ordered an “extra additional” order of white rice, the woman waiting on me raised her eyebrows and asked if I were sure I wanted the rice. I responded with a confident “yes,” as I loved white rice.

The “extra additional” was so much more than a little added side of rice; it was a mountain of a meal that needed its own plate. I couldn’t even eat my way through a quarter of the rice, so I packed it up and ate it as dinner and breakfast the next day.

Parenting “extra additional” children requires more of the following qualities: patience, flexibility, creative problem solving, patience, love, patience, energy and patience. While we all dream about our kids going out into the world and tackling their days with reasonable success, the amount of heart-hitting challenges is overwhelming most days with “extra additional” kiddos. In fact, days once considered boring are few and far between – and even then, when all seems right with your child’s world, deep down, there’s a lingering nervousness that the other shoe will drop at any moment.

Simple things like the phone ringing bring about a twinge of panic and terror alerting you to another incident at school. Words such as “non-compliant” and “BIP” [behavior intervention plan] and “strategies” course through your everyday conversations, and you constantly feel like you’re either apologizing for your child’s behavior or educating yet another person about the nuances of your child’s diagnosis.

The stacks of paperwork and unopened letters from administrators sit on your kitchen counter, reminding you once again how you’ve failed your child.

I understand why you turn all your notifications off on your phone, because the simple friendly chime alerting you to communication from the outside world physically hurts.

I’m right there with you during the hours before an “IEP” [individualized education program] meeting, your emotions and anxiety heightened while waiting for another checklist of things your child has done wrong since your last meeting.

While you’re drowning in psych speech and brainstorming ideas for your child to cope through their day, it seems your own coping skills are cake, coffee, wine or the occasional frivolous Amazon Prime purchase.

Mothers, I’m here to tell you that you are a good parent, in fact, you’re amazingly brave individuals who’ve been handed this being for a purpose. It’s a domino effect of sorts, mothering a child with all the extras, because you never know who will encounter you and yours on any given day. These people see the love in your eyes, the oftentimes painful love, the want and desperate need for you to shape this human into a person who will love and be loved. And if they don’t see it, then the heck with ’em.

Mama, I’m here to hold you in my heart, to rise up and assure you that all you’re doing for this kid will not be in vain. That for every documented fault, your child is coming through on the other side with a two-fold strength that we as adults have never experienced ourselves.

Because the future needs children like ours. For their creativeness and the ability to see plainly the black and white of situations, while others are muddling around in the gray, our kids will enter the world as adults who change their respective worlds. Some will move mountains and save lives, and others, simply by being in the presence of another person, will impact their life in sacred ways.

Mom, I’m here to rally solidarity, to encourage women, as a whole, to frivolously dish out compassion instead of judgment when we see women in the world, as we certainly do not know the struggles they silently are battling for their own.

You’re not alone. You’re not always going to get it right. And you’re going to change. Press into the different life you never imagined and don’t resist it. Instead, learn and reframe what it means to be a parent. Open your eyes and see who else is parenting a kid with extra additional needs, and reach out to find a female crew who will lift you up, propel you forward, and be around to encourage and accept your family.

Together, we are strong.

Elizabeth Rago is an Illinois writer and author living in St. Charles. Her online community, “The Modern Domestic Woman,” tells the stories of women around the world, as it hones in and celebrates the simple everyday things that make us tick. You can find more of her writing at themoderndomesticwoman.com. Feedback can be sent to editorial@kcchronicle.com.

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