The New Down Syndrome Action Plan

  We have all heard about it, seen it, and probably paid 4x as much money for a loaf of bread without it, but when it comes to the metabolisms of our children with an extra 21st chromosome, we need to understand specifically what being gluten free means.  Truthfully, if your child's version of a gluten free diet depends on gluten free substitutes as staples, more harm than good can be done.  My Child Doesn't Have Celiac Disease, Why would I Eliminate Gluten? Gluten is a protein in wheat that acts as a binding agent and gives the products made with it, like bread, a stretchy texture.  Generations ago, people made their own bread with the wheat they grew or bought from a local farm. The preparation of the wheat and the making of the bread was done by hand with basic ingredients. Somewhere around the 1920's industrialization began to impact the way food was produced in the country making it easier and more convenient to get bread. (Indeed, "convenience" is the bigges...

The Power of the Input As a parent of a child with DS, you are intimately aware that genetics play a significant role in shaping your child's development and learning. We also know there is so much more to the story than just DNA. Enter epigenetics —a scientific field of study that is reshaping our understanding of how our environment and lifestyles influence gene expression.   Imagine your child’s DNA as a library full of books, each containing instructions on how to build and maintain their body and mind. Epigenetics is like the librarian who decides which books get read and which stay on the shelf. The books don’t change, but which ones are opened and used can vary based on different factors.  Epigenetics refers to changes in gene expression that don’t involve altering the underlying DNA sequence. Instead, these changes are influenced by various environmental and lifestyle factors—like diet, stress, physical activity, exposure to toxins, and even emotional inputs to th...

 Can we talk about us? I began running an early intervention group for babies with DS at our local Playhouse. Bright and early every Saturday morning, I watched moms bring their babies in carriers, with bags loaded with supplies for the tiny human, older siblings...sometimes toddlers and preschoolers...with their bags full of treats and preferred toys and activities to keep them occupied....sometimes Dad came too and was so excited to meet other dads and learn the things we were talking about. The session was over in 45 minutes, but I could always count on being there much longer. Moms would catch me with questions...always seeming to start with "It's probably nothing, but...," "You'll think this is dumb, but..., and my favorite, "Can you explain this again to me? I need to talk to my son's therapist / doctor / daycare..." Each question prefaced with the belief that others were the expert, and mom needed permission to ask a question. We tried to mov...

 The Impact of Our Internal Sensory System Interoception  is the sense of one's self and the brain's processing of the signals coming from our bodies. The feelings of hunger, thirst, body temperature, digestion, and fatigue are just some signals that come from our internal world to the brain. The purpose of this incredible system is survival and regulation. Unlike the other senses, the sense of interoception provides the brain with information about our internal systems only. It is primal, basic, and far too often, overlooked even in developmental approaches. The Mind - Body Connection First, a super quick breakdown of the nervous systems: Feelings of hunger, thirst, needing to use the bathroom, and feeling your heart pounding after a scare are just a few examples of this mind - body connection. The purpose of interoception is survival. It ensures we eat before getting lightheded, drink before dehydration begins, and either run or fight a threat.  The Vagus Ner...