Understanding the Limits of Control in Parenting a Child with a Disability
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I Can’t Control That My Daughter Has a Disability
It is a blessing in disguise
Controlling Babies
There are numerous aspects of parenthood that lie beyond our control, especially when it comes to our children. While we do influence certain things, such as their clothing, meal choices, and even their sleeping routines, much remains outside of our grasp.
Parents often try to dictate their babies' environments, from car seats to daycare choices. Even with the best intentions—like managing screen time or selecting the language they learn—there’s a sobering realization: the list of what we can control is dwarfed by the vast array of things we cannot. Sleep training, for example, is a booming industry because the reality is that babies have a mind of their own.
Controlling Adolescents
I lost the reins on my child long before she was born. Although her expected birthday was October 11th, she decided to make her entrance on the 19th. “How about that?” she seemed to say as I waddled around, trying every trick to coax her into the world.
Now at 17, my experience as a parent has taught me the limits of my influence. I instill values like kindness and critical thinking, and I chose to live in a neighborhood with a good school and ample outdoor space. I’ve guided her through swimming lessons and street safety while emphasizing the importance of family and friendships.
However, I no longer dictate her clothing choices or bedtimes. Parenting has shifted from control to offering guidance. I can prepare dinner, but she decides whether or not to eat it. In her independent moments, she makes choices that reflect her interests and values. As she approaches adulthood, her choices become her own, and I can only encourage her to stay organized and responsible.
Not a Letting Go Essay
While discussing what I can't control in my teen's life, you may wonder why I haven't mentioned driving, dating, or college. Let me clarify: this isn’t about preparing to let her leave home. My daughter, now 17, will live with me indefinitely.
I don’t foresee her getting behind the wheel, but the prospect of her dating someone like her is possible. Discussions about drugs or wedding plans seem far-fetched at this point. The most significant uncontrollable aspect of my life is my daughter’s developmental disability.
She has always been anxious, but this anxiety has intensified recently. As a parent, I’m not trained to navigate these waters, yet I recognize that such feelings can be common among teenagers. Her struggles are compounded by her limited ability to articulate her emotions, which often leads to frustration.
She perceives life in stark contrasts of happiness and sadness. When I ask her to tidy up, she may react with tears, expressing her sadness. Conversely, joy radiates from her when our elderly cat seeks her affection.
Over the past two years, she has become acutely aware of her differences from her peers. This has led her to question why she is "this way," and I wish I had comforting answers. Unfortunately, her rare genetic disorder will remain a part of her life.
When she was in first grade, we finally learned about her condition, even though signs of difference had been apparent since she was four. The genetic counselor explained that her condition was a de novo deletion—an event that occurred during pregnancy and was not inherited from either of us. I still recall the counselor’s words: “There’s nothing you could have done to change this.”
My daughter’s condition isn’t a trivial accident; it’s a profound reality that shapes her existence. Accidents, to me, are inconsequential spills or misunderstandings. This is different—her condition is not born from negligence, but from randomness. I lack the scientific knowledge to explain it further.
The frustration stemming from my inability to change her circumstances is immense. I can provide support and resources, but her challenges will persist. I can't shield her from the grief she experiences as she becomes aware of her limitations.
I watch other parents exert control over their children’s lives, from coordinating outfits for family photos to enforcing strict diets. I bite my tongue when diet discussions arise, hearing others assert their strategies for keeping their kids active and healthy, as if such measures alone could guarantee well-being.
In the past, I tried to maintain control over my child, but I’ve learned that it’s not feasible.
Wedding Crasher
When my daughter was two, a cousin of my husband invited her to be the flower girl at her wedding. Despite our limited acquaintance, I understood the appeal; my daughter was adorable with her bright eyes and lovely curls.
However, by the time we landed, managing her meltdowns from the disrupted schedule had us exhausted. On the wedding day, fitting her into the dress proved challenging, and I felt the weight of judgment from those around us as we tried to maintain decorum.
She stood stubbornly at the end of the aisle, refusing to walk. With her hand in mine, I guided her down the aisle, but not without a struggle. The laughter from guests felt like a mix of amusement and concern. After the ceremony, she spent the next 45 minutes in the back, completely overwhelmed.
This wasn’t just a moment of childhood mischief; her actions were amplified due to her disability. I had always envisioned my daughter being a part of such occasions, but reality is often more complex than our dreams.
Controlling Our Emotions As Parents
Understanding my daughter's disability has liberated me from societal expectations. I’m not striving for accolades as the parent of a high-achieving student or a prom queen. My aspirations for her do not reflect my unfulfilled dreams.
I no longer fret about matching outfits for family photos or whether she’s an honor student bound for prestigious universities. There’s nothing wrong with cherishing perfect family moments, but it’s equally valid to embrace the quieter, more introspective journeys our children take.
What can be controlled, however, is our attitude. As a parent, pride in your child should remain steadfast, irrespective of the choices they make, especially when those choices lie outside your influence.
Copyright Melissa Marietta
More about my parenting journey here: