The profound importance of illuminating your child's unique life.
As a special needs attorney who has worked with thousands of families over the past 20 years, I understand how, as a practical necessity, parents of children who are living with Intellectual/Developmental Disaibilities (IDD) are focused on diagnoses, treatment, structured care plans, and the day-to-day crunch of life with special needs.
As dedicated caregivers, parents become skilled at managing records and keeping lists. Check the improvised office or spare bedroom at the parent’s home, and you will likely see binders filled with pages of records and detailed instructions.
However, even the most meticulously crafted records cannot fully convey the multifaceted essence of who your child is. While these binders catalog vital treatments, protocols and more, they only offer a snapshot, not the whole picture. The passions, interests, and ever-evolving perspectives that make your child's unique life story cannot be captured solely on static pages.
Although no fun to think about, the day will come when others will need to step in to care for your child. How will your child fare on their lifetime journey without you? How will others know what to do? To do their job, others will need to look beyond the labels to see your child as the individual they truly are.
What sparks their joy today that didn't yesterday? What triggers distress this week that didn't the last? What new pursuits now captivate them? Who are they at this moment in time?
While helpful, binders of records and legal documents fall far short of illuminating your child's unique life.
I learned this lesson from my cleint, Sarah. As we began discussing special needs trust plans for son Alex, Sarah raised her hand in a “stop” motion and said “Here’s one of the things that people will really need to know about my son.”
She showed me a picture of Alex exploring a tide pool. She tap-tap-tapped her pen on the desk, and then in her own words, she told me what her son would say if he could speak: TAP TAP TAP
“In my world, the act of collecting and choosing rocks for my rock art is a deeply sensory experience. I communicate through touch and vibration, a language that may be different from what most people are accustomed to. When I hold a rock in my hand, I'm not just feeling its surface; I'm connecting with its essence. The tap-tap-tapping of rocks together creates a subtle symphony of sensations that guides me in my selection.
Imagine this: as I gently tap two rocks together, my fingers become attuned to the unique vibrations that each rock emits. It's not about hearing sounds; it's about feeling the vibrations travel through my fingertips and into the core of my being. These vibrations carry a story, a narrative of the rock's history, its texture, and its potential. The patterns of vibrations reveal the rock's character, helping me to understand its qualities in a way that's beyond words.
The appearance of the rocks also matters immensely. The interplay of light and shadow on their surfaces tells me about their shape and color. I sense the cool smoothness of one and the rugged texture of another. Each sensation is like a piece of a puzzle that I assemble in my mind, creating a mosaic of understanding about the rock's place in my art.
This process is not slow or deliberate; it's intuitive and instantaneous. My brain has become finely tuned to interpret these sensory inputs in the blink of an eye. It's like a dance of connection between me and the rocks, where I gather information from the tactile and vibrational nuances that others might overlook.
In this world of touch and vibration, I don't need words to express myself. Through my art, I communicate the stories I've felt in the rocks, the harmonies of their resonances, and the intricate relationships that they share. It's a language of sensation, a way of connecting with the world that's both unique and deeply meaningful to me. So, when you see my rock art, remember that it's not just a collection of stones; it's a tapestry woven from the threads of touch, resonance, and understanding.”
Sarah’s passionate expression of her son’s unique talents taught me that parents need effective ways to illuminate the dynamic person behind the label. And that’s why I created Vest.
At Vest, our goal is to empower people with IDD to share what brings them happiness at each age and stage of life. With our collaborative system, parents and their children can document evolving personalities, insights and guidance for the future. This empowers caregivers to offer personalized support based on current needs, not outdated lists.
Our mission is to help people with IDD unveil their vibrant personalities. We do this by providing families the tools to illuminate others with answers to the most fundamental question: "What makes me happy?"
P.S.: Of course, the names Sarah and Alex are fictional. Thier story is true.
P.P.S.: I totally understand that in the midst of the day-to-day logistics of caring for a child with special needs, it can be daunting to think about how to ensure others will know your child as the unique individual they are. While understandable to get caught up in records and minutiae, I encourage all parents to make time for reflecting on the passions, perspectives and evolving interests that capture your child's essence. By illuminating these insights for others, you will enable them to support your child as a multifaceted person, not just through the lens of diagnoses and legal documets.
This post is authored by Michael Pearce, a special needs attorney and the founder of Vest, a person-centered IDD records system. Vest's success underscores the viability of next-generation, personalized lifelong records systems designed with people, rather than providers, at the forefront.
We believe that advances in AI will soon enable a surge of solutions generating invaluable data to improve support for people with IDD. But the legacy folder/file/sync systems are incapable of handling this massive influx of personalized data. This proliferation of knowledge in the evolving “Ask/Answer” world underscores the urgent need for decentralized paradigms for IDD records managment.