The New Down Syndrome Action Plan

An incredibly Brief Look at a Few Differences As parents of children with Down Syndrome, we’re always looking for ways to better understand and support our children's development. It’s no secret that their journey is unique, and so is their brain.  But here’s the incredible thing—the brain is capable of great growth and change. When we understand how it works and what makes it different, we gain the tools to create strategies that unlock their potential. The Cerebral Cortex The cerebral cortex is the part of the brain responsible for higher-level thinking,  “The thinking cap." It outer layer of gray matter organized into bundles of bumps and grooves and handles complex tasks  like problem-solving and reasoning. In children with Down Syndrome, the surface area of this part of the brain is often reduced.  The Cerebellum The cerebellum helps with balance, coordination, rhythm, timing, and motor skills. It too tends to be smaller in children with Down Syndrome. This can ...

  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...