The New Down Syndrome Action Plan

  Deck the Halls! The holidays are a magical time, but between the travel, late nights, sugar overloads, and family chaos, they can feel like a complete disruption to the structure and routines that support our children’s neurodevelopment.  The good news? We can embrace the holidays without losing progress and without adding more stress to our already overloaded plates! Neuroplasticity (the brain’s ability to adapt and rewire) and epigenetics (how lifestyle and environment influence gene expression) are the gifts that keep on giving and they provide us a way to approach this season with purpose and balance.  1. Stick to Core Routines (As Much as Possible) Structure is a lifeline for the brain. Predictable routines signal safety to your child’s nervous system, reducing stress and allowing for optimal learning and development.  While it’s tempting to let bedtime slide or skip other routines during holiday madness, try to maintain core habits like sleep schedules and co...

  A Discussion for Therapy Teams - Please Share One of the biggest threats to our children's development is foundational integration of systems; sensorimotor, reflex, and visualmotor.  Inability to crawl and properly transition through the developmental sequence are two giant red flags. And, crawling is not just a milestone it is an intervention. Our children, once they learn to 4pt crawl, should be on crawling programs for distance long after they learn to walk and run. It is critical. It may take our children much longer to develop the motor plan for crawling - all the more important. It is a sign that they do not have the proper proprioception. Equally threatening is the traditional therapy mindset that "Kids with DS usually don't crawl," or "The goal is mobility, if the child went across the floor with a butt-scooting method, it's fine." or not expecting perfect developmental sequence. I am often asked how to to communicate with therapy teams. I crea...

Today marks a significant milestone for all of us as we officially launch The Down Syndrome Action Plan (DSAP) community platform. This isn’t just the unveiling of a project—it’s the start of a movement that has been years in the making. The Power of a New Beginning Every new beginning is filled with a mix of excitement, hope, and a little nervousness. Whether it’s the start of a journey, a new approach to life, or embracing a fresh mindset, beginnings remind us of our ability to grow and evolve. This community is a place for transformation—of mindsets, approaches, and ultimately Hope into Action . It’s built to support, inspire, and equip parents and caregivers with tools to reimagine what’s possible for their child and family. Why DSAP Exists The journey of parenting a child with Down Syndrome is filled with unique challenges, but also limitless opportunities. When we move away from fear and embrace action, we unlock potential in ways we might never have imagined. Through the DSAP co...

When my son Lucas was born, I found myself faced with many voices telling me what to expect—or, more often, what not to expect—for his future. It didn’t take long to see that the story we often hear about Down syndrome is limited and, honestly, outdated.  As a parent, I couldn’t settle for a predetermined storyline about what Lucas could or couldn’t achieve. I’ve since learned that one of the most powerful tools we have as parents is our own mindset. Research backs this up: parental mindset and expectations have a measurable effect on children’s intellectual and overall development.  Studies show that when parents hold high expectations, children are generally more likely to reach those standards, whether in areas of learning, emotional growth, or personal independence. This is even more true when we’re willing to adapt and learn, approaching our children’s growth with curiosity and hope.  For parents of children with Down syndrome, mindset plays a critical role in unlock...

  Three Stories  First, my middle son is a Junior in college and is taking a Cognitive Psychology class. While preparing for an exam he came to me a bit stressed. The information was new and complicated and he was having difficulty applying the principles to scenarios laid out in the book. He told me the topic was processing and asked for guidance.  Let's see, time with my adult son while nerding out to cognitive science? You don't have to ask me twice! Second, I had coincidentally been reading a book called Seeing What Others Don't; The Remarkable Ways We Gain Insights,  by Gary Klein. In it, he attempts to solve the "mystery" of how remarkable insights occur to some and not others.  Third, I think of all the intellectual programs we did when Lucas was a baby. I remember having the honor of meeting Glen Doman at the Institutes when I was in Philadelphia for the Developmental course, and remember the discussions around intelligence. The Institutes impressed upon...

  Artificial Intelligence and Learning My husband doesn't like the term artificial intelligence. He thinks a better description is organized intelligence.  Just as a calculator can not calculate without human intelligence punching in the directions and a maps app can not chart your course without a person first telling it where they want to go, so it is with AI's ability to organize information.  Our work in general often times depends on something or someone external to us organizing information. A paralegal, a research assistant, a therapy aide, a teacher's aide, etc., all perform specific tasks or gather specific pieces of information upon request.  The therapy aide may not know the reason for the specific exercises after a tendon release surgery, but they are extremely efficient and skilled at carrying them out. A head researcher may be on the brink of a life changing discovery, but gathering the proof she needs to make her case will take many hours of digging in...