There’s a certain discomfort that arises when, after detailing my daughter’s diagnoses, a well-meaning friend responds with, “I had similar issues growing up, and I turned out fine.” While the intention is to comfort and reassure, such comments often leave me feeling dismissed.
Then there’s the well-meaning relative who asserts that everyone learns at their own pace, and I nod along, knowing it’s true, yet feeling a wave of frustration wash over me. These statements can be incredibly invalidating.
I find myself questioning my efforts, wondering if I’m doing too much, when in reality, most of the time I worry if I’m doing enough. Each week, I take her to occupational therapy and gymnastics. I work with her at home and have fought to include speech therapy in her Individual Education Plan (IEP) at preschool. I’ve attended presentations by behavioral experts, consulted a developmental specialist, and even stressed over genetic testing. If everyone turns out fine in the end, what’s the point of all these therapies and planning?
My daughter has four diagnoses, none of which are immediately visible to the untrained eye. One has been improved through surgery, one has become more noticeable with age, and two she has learned to cope with. She undergoes weekly occupational therapy and receives physical and speech therapies at school, and we’re about to introduce equine therapy into her routine. Her gymnastics class, which she has enjoyed for two years, is not just a fun activity; it serves as a crucial proprioceptive exercise that aids her self-regulation, motor planning, and balance.
I have a strong aversion to the term “special needs.” It carries an implication of fragility, low expectations, and often evokes pity. I know this all too well from my own experiences growing up when that label was used to describe me. In reality, don’t we all have unique needs? Each of my children requires a different approach, showcasing their distinct personalities, strengths, and challenges. This is what parenting demands—customized, thoughtful engagement to meet every child where they are.
Though I often resort to using “special needs” for its familiarity, I acknowledge that it can oversimplify complex situations.
My daughter, categorized as “special needs,” often requires a firm approach to match her exuberance and unwavering spirit. Parenting a child needing extra support can be a thorny path filled with self-doubt and frustration that permeates daily life.
Every choice leads to second-guessing: Is using her favorite plate accommodating her needs or fostering inflexibility? Am I providing healthy boundaries or merely seeking sympathy when I share our struggles? Am I limiting our family by declining outings that seem impossible right now? It’s a constant balancing act between nurturing independence and maintaining realistic expectations.
Frustration surfaces when explaining to her pediatrician why sleep training isn’t a suitable solution, or when an expert dismisses sensory disorders because they’re not in the DSM. Yet, I have witnessed the positive effects of a weighted blanket, noise-canceling headphones, and physical activity. I’ve seen how missing an OT session can lead to noticeable regression.
And yet, there’s also joy: celebrating achievements, no matter how small, with unabashed enthusiasm.
I don’t seek admiration for my parenting; I crave understanding. When I connect with someone who recognizes the challenges I face, it sparks warmth within me. I’ve formed bonds with fellow parents navigating similar hurdles, trading insights on sensory issues, toilet training, and feeding challenges. I owe a debt of gratitude to occupational and speech therapists, school psychologists, and educators who love and nurture my child as fiercely as I do. This journey has introduced me to a community I never expected to join, and I can’t imagine my life without it.
Ultimately, I often reflect on why I engage in all this—therapies, advocacy, and research. The answer is clear: my daughter is thriving because of the support and services I’ve facilitated for her.
While she may not have been walking, talking, or jumping, she was busy developing her own abilities to perceive the world differently. She’s tapped into an inner strength that helped her endure a tonsillectomy at just three years old. She’s learning to articulate her feelings, even if her words don’t yet come out clearly. My daughter is harnessing her unique abilities.
We are not defined by our children’s diagnoses, nor do they sum up who they are. So, please stop trying to reassure us. We don’t need pity. Our kids are exactly who they are meant to be.
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Summary
The term “special needs” can be limiting and often carries a stigma that fosters pity rather than understanding. As a parent of a child with multiple diagnoses, I recognize the significant effort and advocacy required, which can lead to self-doubt. However, my daughter is not defined by her labels; she is blossoming in her unique way. Parenthood demands tailored approaches for every child, highlighting the importance of community and support.
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