Eleven Years Later

Eleven years ago I was forced to redefine the reality for what having a child with Down Syndrome would mean. I created this blog and a group on FB (DSAP) selfishly, because no one else shared my vision. I thought, just maybe, there were other people out there in the world who thought like me. Maybe I was delusional, but at least I would have company. 

I was contacted by mothers who were lost in a sea of voices trying to limit their children, and it seemed as if swimming against the tide would indeed drown us all. Skype conversations at 2 am, impromptu drives to NYC to meet a family traveling from Australia, more all-nighters than we spent in college reading and deciphering research articles, and endless conversations...not lamenting how things should be, but making plans on how to make them reality. Yesterday, on my birthday, I took stock. 

One mother interviewed me for a publication she is writing. She is also a PhD level functional nutritionist. Her child, who is non verbal and has a diagnosis of DS and autism, is learning pre-algebra with his mother. The school wanted to teach him the ABC's. Apparently, unless a child can prove he knows something, no respect in given to his intellect.

Another mother, who was a traditional physician, is now a visionary in progressive medicine for our children's unique needs. It is a mission of hers to educate us all to demand answers, and that when a doctor dismisses our concerns as "That's just DS," we understanding that is what she professionally calls diagnostic overshadowing - or plainly, negligence.

Another mother proudly shared her new e-book series teaching reading comprehension to our children, the way they truly need to learn...and many more who are homeschooling their children to levels that were previously unheard. 

Two moms in particular blow me away with their dedication to medical, neurological, and genetic research. The articles they share, and then in turn push for further research and application, most of us can barely understand. 

Most inspiring are the mothers who have children with complex needs. These moms who have been asking and pushing and working for years without answers. They are heroes, because despite every avenue that led to a dead end, they course corrected, charted a new path and forge on. Their children are truly blessed. And we, as a community, are behind them. 

These are just some examples of moms that were nearly broken, and simply decided enough was enough. We took our instincts, educations, and powerful love, and created a new reality. We could have been wrong. We weren't. Eleven years ago I wondered if changing the world for Lucas was too lofty a goal. Today, I am seeing it happen. Our children with complex stories and abilities waiting to be revealed are that much closer to realizing them and others are becoming well, learning, and blowing past even our sky high expectations.

The vision for the next 10 years is clear. We will take the burdens of the over-taxed educational system...a system which can only operate from a problem-based approach and fulfill only the basic element of inclusion; that being physical inclusion. We will create systems, and processes, and knowledge bases, and literature, and programs, and services, to teach our children from a strength-based approach, one that is focused on true learning, and demand all three critical pieces of inclusion...Physical, Emotional, and Intellectual. 

We will continue to dismiss the attitude of traditional medicine that we must accept poor health and development from our children. We will write, speak, and demonstrate the life altering approaches of functional nutrition, epigenetics, appropriate physical challenges, and ways to address the unique needs of each child with an extra 21st chromosome. 

Above all, we will demand a change in attitude. 

We will dismiss the idea that because our children may not be able to prove what they know in a standardized and structured way, it is assumed they don't understand.We refuse to let the educational system withhold true educational opportunities waiting for our children to prove basic skills. We refuse to to see Inclusion as a method, one in which the pattern of the young child starting off fully included, only to give way to the middle schooler is secluded in a more restrictive classroom plays out over and over again because they have fallen behind. Rather, we will view inclusion as the goal, one in which learning environments are tailored to children throughout based on their strengths instead of their perceived weaknesses with the ultimate goal being true and full inclusion. 

You have inspired me and challenged me beyond words. Most importantly, our children are responding in amazing ways and are beginning to teach us. They are becoming partners in this search for answers.

We have issues left to solve and questions left to answer, and we will because after 11 years we are just getting started.