Thursday, October 27, 2011

{31 for 21} Day 27: One Thing

Today is the last common topic of the month - "What I Wish People Would Understand About Down Syndrome".  The goal is to express the one most important thing that I want people understand about Down Syndrome. 


I'm not entirely sure where to go with this topic.  There are so many things I want people to understand, but I think what it really boils down to is that I want them to *get* is that Sweet Pea is a baby just like any other.

I want them to *get* that she has as much potential as her brothers and sister.

I ran across this post while I was trying to Occupy Children's Med City and thought it spoke volumes to what I want people to get.

I hope they don't mind me re-posting it here:

Einstein Syndrome

by Miriam Kauk

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”
The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.
Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.
Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.
This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.
Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.
Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”
As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.
With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.
I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.
This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.
As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.
I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.
This article was first published in the Teaching Home magazine in July/Aug 1994.
Copyright 1994-2011 Miriam Kauk


I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.

I would like to add that most parents of children with Down syndrome want the best for them and with more access to therapies, this generation of children will achieve more than any other generation.  Now, it isn't the low expectations of the parents that hold them back, its the low expectations of society.

I wrote a post the other day about seeing my child through God's eyes.  My heart was heavy that day because I had run into someone who didn't believe that Sweet Pea could achieve as much as her brothers and sister.  A person who believed that it wouldn't be worthwhile to invest in her future.  

So, to that one person, and any others who want to believe she isn't worthwhile, I challenge to view her and other children like her through God's eyes.  Because God doesn't make any mistakes.  Sweet Pea's life has a purpose and a future.


  1. Great post. That article is very good too!

  2. I agree, great post! I have found people even in the SN world, who in one breath say that we need to have high expectations, will turn around and give me some song and dance about what to expect from Miss K in terms of behavior or development.