It’s the moment when, after explaining your child’s diagnoses, a well-meaning friend says something like, “Well, I had A and B as a kid, and I turned out fine.” While their intentions come from a good place—offering reassurance and comfort—the impact can be incredibly invalidating.
You might find yourself questioning whether you’re doing too much when, in reality, you often wonder if you’re doing enough. Weekly, you take your child to occupational therapy and gymnastics. You work with them at home and have fought to include speech therapy in their Individualized Education Plan (IEP) at preschool. You attend presentations by specialists and worry over genetic testing. If everything’s going to be okay in the end, why go through all the effort? What’s the purpose of therapies and the IEP if they’re supposedly going to turn out fine?
Currently, my child has four diagnoses, none of which are immediately visible to the untrained eye. One has been addressed with surgery, one has become more pronounced as they’ve grown, and two they’ve learned to navigate. They attend weekly occupational therapy (previously at home, now at a facility), as well as physical and speech therapies at school. We’re even looking to add equine therapy soon. Their gymnastics class isn’t just for fun; it serves as a vital activity for self-regulation, motor planning, and balance.
I find the label “special needs” unappealing. It carries an air of fragility and low expectations. I recognize it from the pitying glances it prompts in others, a feeling I’ve experienced myself. Don’t we all have special needs? I raise each of my children differently, catering to their unique personalities, strengths, and challenges. This kind of personalized parenting is essential for all families.
Yet, I often use the term “special needs” for its recognizability. Diagnoses can be helpful, but labels often lead to misunderstandings. The gap between the two is frequently too small for people not to cross.
My child, often labeled “special needs,” requires a strong voice to match their spirited nature. Parenting a child who needs additional support intertwines with self-doubt and frustration, making every decision feel like a double-edged sword. Am I fulfilling a need or fostering inflexibility by serving dinner on their favorite plate? Where’s the line between accommodation and enabling? When others question your choices, do they reflect limitations or realistic boundaries?
Frustration can stem from conversations with professionals who dismiss your experiences or from the difficulties of explaining your child’s unique challenges. Yet, there’s also joy in celebrating milestones, no matter how long it takes to achieve them.
You don’t seek admiration, just validation. When someone acknowledges the difficulty of your journey, it can feel like a breath of fresh air. You bond with other parents over common challenges, exchanging ideas and support that make a world of difference. I’m thankful for the therapists and educators who show my child the same love I do, and I cherish the community that I’ve found.
So, why do I engage in therapies, research, and advocacy? Because my child is thriving thanks to the support and resources I’ve made available. While they may not be walking or talking in expected ways, they are developing unique abilities to understand and interact with the world around them.
They are becoming resilient, learning to express themselves in ways that are meaningful to them, and cultivating a profound intuition. My child is not defined by their diagnoses—they are becoming someone extraordinary.
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Summary:
The term “special needs” is often viewed as a label that carries negative connotations and low expectations. This article discusses the complexities of parenting a child with unique challenges, emphasizing the need for personalized support and understanding. It highlights the joy of celebrating milestones and the importance of community and advocacy in fostering a child’s growth and development.