About me I am Miriam Kauk, the mother of a daughter with Down syndrome. My life took a turn back in 1992 when Mary was born. I was immersed into a community of people who understand, experientially, the value of one human life, who understand what makes life worth living, and who see the world through different eyes. Parents of children with special needs are a breed apart, and I have counted it a privilege to be a part of this community. Mary is the fifth of nine children. Because of her I have been immeasurably blessed. Because I was forced to research to understand the “syndrome” of Trisomy 21, I found myself as a resource for other parents. This site is part of my effort to give back to a community who have given so much to me.
About the term “Einstein Syndrome”
When my daughter was born with Down syndrome, back in 1992 B.I. (Before Internet), there was almost no positive information available anywhere about DS. As a new parent I was inundated with “she will never…” from nearly every source. Positive information was hard to come by. Nutritional intervention did not exist. It made me angry that all the “experts” wanted me to quit on Mary before I even tried.
I recall standing in my kitchen complaining to my sister about this negativity. I imagined being told that Mary was born a genius rather than being told that she was born retarded. I called the imaginary genius diagnosis “Einstein Syndrome.” The result of that conversation was an article that I submitted to The Teaching Home, a homeschooling magazine, which they published in their July/August 1994 issue. A variation of the same article was published in A Circle of Friends and again in 2000 in the revised A Circle of Friends, II, a parent-compiled book of positive information on Down syndrome.
“Einstein-Syndrome” is also the name of an email list, hosted at the http://www.tbinet.org since December, 2000, and before that at Yahoogroups and before that at eGroups before Yahoo bought them out. Much of the content of this website comes from the parents and professionals who post on the ES list.
If you have come to this site looking for information about the book written by Thomas Sowell, The Einstein Syndrome: Bright Children who Talk Late, you have come to the wrong place. Sowell’s book, published in 2001, refers literally to Albert Einstein who was a late talker. His meaning is entirely different from mine.
About this site
Most of the content on this site comes from parents on the Einstein-Syndrome email list. This “list” is an automatic e-mail distribution program. Members of the list send a message to the list e-mail address. The message is automatically distributed to all other members of the list. It is an excellent way to share information and receive support from other parents and professionals.
The Einstein-Syndrome list is designed to provide a place for parents and professionals to share positive information for helping their children become all that God wants them to become, not bound by the negative stereotypes that accompany a diagnosis of Down Syndrome. Positive approaches to health, nutrition, disease prevention, education, therapies, social and spiritual training are discussed. This includes but is not limited to targeted nutritional intervention (TNI, NuTriVene-D and MSBPlus) and other vitamin therapy; NACD, ICAN and other neurodevelopmental approaches; early intervention, therapies, and schooling options.
What does Albert Einstein have to do with Trisomy 21? It is a matter of expectations. When my daughter was just a year old, I asked myself is what I would be doing differently if they had told me that my daughter had “Einstein” Syndrome rather than Down Syndrome. The answer was lots. I decided to do those things anyway. On this email list, parents and professionals are pushing the limits of what it means to have Down Syndrome. We are exploring options that are sometimes out of the mainstream, always looking for better ways to help our children.By browsing this site, you will get a good feel for the type of information that is discussed in greater detail in the list.
All of the members of the Einstein-Syndrome list must provide the list owner with their true names, address and phone number so that the owner knows who is on the list. The list owner may ask for a means to confirm your name, she may look up your name in the telephone directory and call that number to confirm that the name and number are you, or she may write you snail mail and ask you to respond by email. Often our members post personal information about their children and families in order to help or encourage other families. Therefore no anonymous lurkers are permitted on the email list. It is our experience that this increases the level of civility, respect, and even community, because we are all real people to one another, using our real names. Many U.S. subscribers have provided positive ID by sending a check for $1 to me, the list owner. A check that the bank cashes is a simple way to confirm your identity. At this time, the $1 check is not a requirement, but it may become a requirement again sometime in the future.
Though we all use our real names on the email list, I have taken the liberty of changing names when the posts are copied into this site, to protect the privacy of the children whose lives we are discussing. If you’d like to join, email me and give your name, address, phone, and a brief introduction. In most cases the process of joining the list should only take a day or two.