Planning Your Will as the Parent of a Special Needs Child: A Journey of Love and Responsibility
As the parent of a special needs child, there’s one thought that quietly haunts many of us: What will happen to my child when I’m gone? It’s a question that doesn’t have a simple answer—and one that I’ve wrestled with more and more now that my son Justin is 25.
Justin has defied every odd. Diagnosed with autism as a toddler and once believed to never speak, he now cooks, writes, and shares his joy with thousands through our Autism Family Circus community. But no matter how high-functioning or independent he becomes, there’s a part of me that knows he will always need some level of support. And that support—once I’m no longer here—must be thoughtfully, lovingly planned for.
Creating a last will and testament is emotional for any parent. But for those of us with a special needs child, it carries extra weight. You’re not just dividing up assets. You’re making perhaps the most important decision of your life: choosing who will love and protect your most precious treasure after you’re gone.
That’s where my heart gets heavy.
One of Justin’s brothers passed away. Another lives far away. A third has three children of his own. One lives close but travels a lot. Each of them loves Justin. But love alone doesn’t answer the hard questions—like who has the time, the emotional strength, and the long-term stability to care for a sibling with unique needs?
I sought professional help to begin this journey. Cinder Wealth Management helped me with the financial side—creating a plan that protects Justin’s benefits and ensures he’ll be cared for financially without losing access to support programs. That lifted a huge weight. But no wealth manager can decide who will stand in my place, advocating for Justin’s needs and understanding his routines, his sensitivities, and his dreams.
There’s no perfect solution. But not planning isn’t an option.
If you’re the parent of a child with special needs, start now. Speak with a special needs estate planner. Consider a special needs trust. Have those hard, honest conversations with your family. Most of all, write down your child’s routines, preferences, and quirks—what only a parent would know. That roadmap might one day guide someone else in loving your child as you do.
This journey is hard. I’m walking it, too. But we owe it to our children to prepare as best we can—not just out of fear, but out of love.