It’s been eight years since a team of specialists diagnosed my eldest child with sensory processing disorder (SPD). Prior to that fateful day, I had never encountered the term SPD. Back then, my home life felt like a whirlwind. Most nights, I climbed into bed utterly drained and defeated, grappling with feelings of despair. Fast forward to today, and our family dynamic has transformed dramatically. My oldest, who once struggled with severe SPD and significant speech delays, now resembles any typical fifth grader—chatty and full of life. My youngest son, diagnosed with SPD at just 18 months, has thankfully outgrown his symptoms.
Over the past six years, I’ve connected with countless families worldwide through my nonprofit, SPD Parent Zone. Many of them are just beginning their journeys and are confronted by the same feelings of hopelessness I once experienced. I established SPD Parent Zone to ease the path for families following in my footsteps, providing them with guidance and encouragement. Here are ten lessons I cherish and share with other parents:
- Have Faith in Your Child.
Every child needs at least one person who believes in them. I always felt that if I didn’t believe in my kids, no one else would. No matter how bleak things appear, keep your faith alive. Trust in their potential beyond their diagnosis. When you believe, it inspires action, and that’s when the real progress begins. - Trust Yourself.
Always listen to your instincts. You know when something isn’t right with your child. It’s easy to be swayed by well-meaning advice from doctors or family, but you are the foremost expert on your child. Trust that knowledge and act on it as soon as possible. - Find Your Supportive Community.
The adage “it takes a village to raise a child” rings especially true in our journey. Locating that supportive community can be challenging, but persistence pays off. Once we found the right school and team for our children, they began to flourish. Resources like the STAR Institute’s Treatment Directory can help you find local experts. - Persevere.
There are days when my kids seem to make progress only to regress. It can be disheartening, but therapists remind me that setbacks are part of the journey. Focus on the distance you’ve come rather than the road ahead. Small, consistent efforts lead to significant changes. - Educate Yourself.
Knowledge is empowering! Understanding SPD through research can help you support your child better. I spent countless evenings learning about SPD—sometimes it felt overwhelming. Engaging with others who have experience can help you avoid pitfalls and save time. For more insights, check out STAR Institute’s Research Page. - Prioritize Self-Care.
Taking care of yourself is crucial, yet often feels selfish. Being a parent of a child with SPD can be exhausting. Carving out time for yourself allows you to recharge and be present for your family. Remember, self-care is a necessity, not a luxury. - Join Their World.
My youngest taught me the importance of this lesson. She would engage in whatever activity her brother was doing, making it easier for him to connect and have fun. Whether it was spinning or playing, her participation helped build trust and comfort in his world. - See Through Their Perspective.
Understanding your child’s feelings and needs is crucial. My son’s aversion to certain sensations made sense once I learned about SPD. By empathizing with his experiences, I can respond with greater patience. This perspective also highlights the importance of surrounding yourself with individuals who truly understand your child. - Ignore the Critics.
Many parents face unsolicited advice, often from those closest to them. I encountered plenty of well-meaning but misinformed suggestions. Focus on your journey, trust your instincts, and seek guidance from professionals. - Practice Gratitude.
Shift your focus to what you have instead of what you lack. Positivity breeds positivity. Regardless of challenges, there’s always something to be thankful for. Many would gladly trade places with you, so cherish your blessings.
BONUS: Things Do Get Better, and Hope Abounds!
Initially, many professionals labeled my son as one of the most severe cases they had encountered. He faced numerous challenges, including being removed from preschool and various teams. Yet, here we are eight years later—he’s thriving in school, enjoying sports, and surrounded by friends. My hopes for him have evolved significantly, and I attribute this growth to the very principles outlined above. If we can navigate this path, so can you!
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be.” — Joan Ryan, The Water Giver.
October serves as National Sensory Awareness Month. To learn more about raising awareness for SPD, visit the STAR Institute.
Summary
Parenting a child with sensory processing disorder is a challenging yet rewarding journey. By believing in your child and yourself, seeking support, staying informed, and practicing self-care, you can navigate the complexities of SPD. Remember to celebrate the small victories and focus on gratitude, as change is possible and hope remains.