The "why your kid is crappy" list

This is an edited post from 2012, but it has a lot of information about DS to share for the awareness month. 

When I think about "the list" of things that are associated with DS I can't help but think back to Phoenix's second day of life when The Geneticist sat Husband and I down to explain about Down syndrome. He delivered what I now think of as the "why your kid is crappy" list. Which is pretty much how I felt after the Geneticist was done with his run down of what we could "expect" and how Phoenix was different from other kids.

Before I launch into "the list", I'd like to talk about the problem with delivering news about my child's condition this way: It didn't actually tell me anything specific about my child.  

Giving new parents a laundry list of how our kids are different, all the medical conditions associated with DS, and a list of everything that could go wrong is totally pointless. For a really good discussion of why talks like these are problematic, read here and download the pdf. Don't let the fact that this is a medical journal deter you. The author is a journalist with a child with DS, and the article is very 'readable' as medical journals go.

Here's what delivering a list like this didn't tell me. It didn't tell me that at 11 months my daughter would be crawling, or at a year would be pulling to stand, or that at 22 months she would be walking. 

It didn't tell me that at 2 and a half she would know her alphabet, numbers, shapes and a handful of sight words.

 It didn't tell me that she would have a heartbreaking smile and an engaging personality. 

It didn't tell me that she would hate the feel of the wind in her face or to love snuggling after her afternoon nap. 

It didn't tell me that she would easily remember the name of every child in her class and that over the past 2 years that Phoenix would learn to sight read a list of over 400 words.


In fact, it didn't tell me anything helpful at all about my daughter. 

It certainly didn't prepare me for the fact that at a year old Phoenix might develop Alopecia and loose all her hair. Because even with all of Science's correlations and associations, it can't predict how extra genetic material is going to impact my child.

The presence of the extra chromosome causes a variety of differences in each individual - which is why it is referred to as a syndrome. Some of the physical diiferences on the "list" are:

Low muscle tone, extra skin at the nape of the neck, a flattened bridge of the nose, a single crease in the palm of the hand (simian crease), small ears,  small mouth, upward slanting eyes with an extra fold of skin near the nose, wide, short hands with short fingers, white spots on the colored part of the eye (Brushfield spots). Also, most children with Down syndrome are physically smaller than you would expect based upon their parents height.

So we are given this list, and the overall feeling I have is negativity. As if my daughter, because she has some, or all, of these characteristics, is flawed. Unacceptable. Ugly. 

Because otherwise, why would you bother mentioning these things at all?

Here's the thing. Yes, Phoenix has small ears, and a small nose, and a small, bald head. Yes, she has a different crease on her hand, and stubby fingers. Yes, she has an extra fold of skin next to her nose which make her eyes appear wider. Yes, she is smaller than most other kids her age. 

But when I look at her, I don't see flawed. I don't see ugly. I see a child who is beautiful. Who has alabaster skin. Who has a perfectly formed head and lovely almond-shaped eyes. 

I see beauty. 

Not ugly.

Phoenix is not a list of attributes. She's a human being. 

Unlike, perhaps, the Geneticist.