Einstein Syndrome: Down Syndrome with a Positive Attitude

Jenny Marrs recently updated her son John’s website, John, the Wonder Boy, as he is known on Down Syndrome email lists. For years, Jenny’s list of developmental exercises has been helpful for new parents who want ideas of how to help their children.

Jenny’s poem, “The Extra Within” posted in the Inspiration section of this website, was written early in John’s life. She puts words to what many parents see: a connection that our children have with God.

Jenny is a fighter. She has been fighting the labels that limit him all of John’s life. You’ll look a long time at her site to find John referred to as having “Down syndrome.” I have to admit that I agree with her in large part. Trisomy 21 does not necessarily mean that the child will have the list of symptoms itemized by Langdon Down. But here, I’ll let Jenny say it herself:

I think the biggest burden on our children today is the many labels put on them, beginning with “Down syndrome”. … The word “syndrome” is defined as “a list of symptoms”. Because of this list made in the year 1865, our children are burdened at birth with a label. This label and list is why many people look at John but can’t see the child. This is why some of his past doctors were willing to accept illness for him and it didn’t even occur to them to attempt wellness.

She fights the developmental profiles that hold him back:

Another injustice to our children is the developmental chart suggesting almost everything will be later. Buy into that thinking, and everything is almost certain to be later. Because of low muscle tone, John did need more help to accomplish gross motor milestones, but we did accomplish them in a typical time frame. I believe in the importance of the “windows of opportunity” and I believe those windows are the same in all children. I believe that the child who develops within those windows of opportunity has an edge. The professionals that I first looked to for guidance, my doctor, therapists, and Early Intervention providers, all accepted the “special” charts and did not strive for a normal development. Normal development would not, in most of society’s eyes, be realistic. “Reality” to them was that John had Down syndrome and their education and experience had taught them to expect less. My reality and experience tells me that if you expect less then less is exactly what you will get!

But Jenny is also full of heart. On a site that itemizes John’s academic accomplishments, Jenny sees past those and describes John himself as the gift:

Perhaps an amniocentesis that suggests Trisomy 21 won’t be seen as an opportunity to make a choice but rather that this child will be seen as the gift that he is; a child with more, not less; a child who will teach us more than we will ever dream of teaching him. This child touches the heart in a very special way and has a profound message for those who have the wisdom to listen.

Here is the last verse of another poem, expressing Jenny’s view of John and his relationship to Trisomy 21:

Filed under: Positive attitude, Spiritual, encouragements, home life | Tagged: amniocentesis, developmental disability, Down Syndrome, Trisomy 21