Dear Special Parent,
As a parent, you’re wired to notice every little detail about your child - their first smile, the sound of their laughter, and yes, even the unique way they crawl. It was my daughter Lexi’s crawl that first caught my attention. Unlike the typical hands-and-knees motion, hers was...different. Alongside this, her vocabulary seemed sparse compared to her peers. When I voiced these observations, the response was less than validating. “Her eye-contact is perfect!” the pediatrician assured me, suggesting that my worries were unfounded. My family, though well-meaning, echoed similar sentiments, leaving me to wade through a sea of doubts and fears alone.
But here’s the thing: those gut feelings, those whispers of concern that keep you up at night? They matter. I ultimately decided to trust my instincts, self-referring Lexi at 18 months for physical and speech therapies, a consultation with a developmental pediatrician, and enrollment in our state’s Early Intervention Program. It was a decision that didn’t come lightly, marred by stress and the fear of overreacting. Yet, it was a decision that ultimately led to Lexi’s Rett Syndrome diagnosis and early intervention that she so critically needed. Yes, my concerns made me a little crazy - crazy enough to take action, and as it turns out, I was right.
Parents as the First Line of Defense
This journey taught me a vital lesson: parents are often the first to suspect developmental delays. While it’s crucial to listen to professionals, it’s equally important to advocate for your child, even if it means facing resistance. Pediatricians are invaluable allies, but they're also human. As such, they can overlook signs that a parent's keen eye might catch.
If your concerns are dismissed, but your gut tells you something’s off, push for evaluations. Early intervention can be transformative, and the earlier, the better. In many cases, states offer programs designed to assess and aid children experiencing developmental delays. These resources can be invaluable for your child, and you.
Remember, advocating for your child may require you to become that parent - the one who asks for more, who demands attention, who, to some, might seem a little ‘crazy.’ But in the realm of developmental delays and disabilities, being proactive can make a world of difference in your child’s life.
In the end, remember that you know your child better than anyone. Your vigilant eyes catch the subtleties that might escape others—every furrow in their brow, each spark of curiosity, the hesitations before a smile. These observations, your innermost concerns, and yes, even the worries that haunt you in the quiet hours—they are all deeply valid. Far from being mere anxieties, they form the vital pulse that drives you to action, ensuring that your child does not just grow, but flourishes. It is your unyielding advocacy, fueled by these intimate insights, that will champion your child’s cause, securing the essential supports and interventions that pave the way for them to thrive.
So, to all the parents out there navigating similar waters, feeling isolated in their concerns or faced with skepticism, know this: your intuition about your child’s development deserves attention. You might indeed be a little crazy - crazy about ensuring that your child has every opportunity for support and success. And in that craziness, you’re absolutely right.
Dr. Kimberly
Dr. Kimberly Idoko
Certified Special Parent Coach
Dr. Kimberly is the mother and fierce advocate of Aiden and Lexi; Lexi is developmentally disabled by Rett Syndrome. Dr. Kimberly is a board-certified neurologist in clinical practice for more than 15 years; she is also a children’s rights attorney — the former director of healthcare advocacy at a Los Angeles-based legal agency. She is Yale College, Penn Medicine, Columbia Business, and Stanford Law trained.
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