It’s been eight years since a dedicated team of professionals first identified sensory processing disorder (SPD) in my eldest child. Prior to that diagnosis, I was blissfully ignorant of SPD and its implications. My family life was a whirlwind of chaos, and most nights, I would collapse into bed, utterly drained and feeling like I was losing the battle of parenthood. Thankfully, our reality has transformed dramatically since then. My oldest has progressed from severe SPD and significant speech delays to being a lively fifth grader who can’t stop chatting! (My youngest often jokes that he’s making up for those four silent years.) My youngest son was diagnosed with SPD at 18 months, but today, he’s symptom-free.
Over the past six years, I’ve connected with countless families globally through my nonprofit, SPD Parent Network. Many of them are just beginning their own journeys and feeling the same despair I once felt. I founded SPD Parent Network to ease their path, offering support and guidance. Here are ten lessons that I frequently share with these families:
- Have Faith in Your Child.
Every child needs at least one person who believes in them. I’ve always thought that if I didn’t have faith in my children, no one else would. It can be tough to maintain that belief, especially when the situation seems dire. But keep believing—not just in their diagnosis but in their potential. When you believe, you take action, and as they witness your faith, they start to believe in themselves too. That’s where the magic begins! - Trust Yourself.
Your instincts are invaluable. You often know when something feels off with your child. It’s easy to dismiss that feeling, especially with well-meaning input from doctors or friends. But remember: you are the expert on your child. Trust your instincts and act on them—swiftly! - Build Your Support Network.
“It takes a village to raise a child” rings true for many of us. Finding that supportive village can be challenging, but persistence pays off. It took us years to find the right school and support team, but once we did, our children flourished. Don’t hesitate to seek out resources like the STAR Institute’s Treatment Directory for local experts. - Persevere.
Some days, it felt like my kids were taking two steps forward and ten steps back, which was incredibly frustrating. But regression is part of the journey. Focus on your progress, no matter how small. Consistent effort leads to significant changes over time. - Knowledge is Power.
The more you know, the more you can help your child. I spent countless hours researching SPD, and while it can be overwhelming, it’s essential. Engage with experts—parents, therapists, teachers, and medical professionals—to learn from their experiences. It’s a shortcut to avoiding many pitfalls. - Prioritize Yourself.
Taking care of yourself might feel selfish, but it’s crucial. Parenting a child with SPD can drain your energy. Carving out time for self-care helps you recharge and be present for your family. Don’t underestimate its importance! - Enter Their World.
My youngest taught me this invaluable lesson. She would join her brother in whatever activity he was engaged in, like spinning. This simple act created a bond and helped him feel more secure in a chaotic world. Embrace their interests and get a little goofy—it fosters trust! - See Through Their Eyes.
Understanding your child’s perspective is key. For instance, I struggled to grasp why simple tasks like hair washing were traumatic for my son. Learning about SPD helped me understand his reactions. This perspective fosters patience and empathy, essential for navigating daily challenges. - Ignore the Naysayers.
Naysayers are everywhere, often those closest to you. When my children were younger, unsolicited advice came from all directions, making me question myself. Remember, you know your child best. Don’t let misguided opinions shake your confidence! - Practice Gratitude.
Focus on what you have rather than what you lack. Positive thoughts create positive outcomes. No matter how tough the situation, there’s always something to be grateful for. Reflect on your blessings; they matter more than you think.
BONUS: Hope is Ever-Present!
In the early days following my son’s diagnosis, many professionals labeled him as one of the most severe cases they’d encountered. Fast forward to today—he’s thriving in school, playing sports, and making wonderful friends. My initial hopes were modest—just a desire for him to eat more than a select few foods and sleep through the night. Adhering to these ten lessons has transformed our lives, and if we can do it, so can you!
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have.” — Joan Ryan
October is National Sensory Awareness Month. For more information on raising awareness, check out the STAR Institute for SPD.
Summary:
Navigating the complexities of parenting a child with sensory processing disorder is a challenging yet rewarding journey. Embracing belief in your child, trusting yourself, building a supportive network, and practicing gratitude can transform despair into hope. Remember, you’re not alone in this journey; support and resources are available.