Tuesday, 6 October 2015

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.


  1. I think it is all about the presentation. We had a very warm, considerate, and caring geneticist and therefore the list was delivered as posibilities. I also can't imagine not knowing these things about Down syndrome. Just like a diagnosis of cancer, there are risks, side effects, and other potenial problems. You can't tell a cancer patient what exactly is going to happen to them during and after chemo. What you can do is compassionately educated them so that they can make informed choices and choose how they will deal with their diagnosis.

    I am sorry that you had a crappy geneticist and we certainly had our fair share of crappy with Bridgie's diagnosis but by the time we got to the geneticist I was so glad to have this information it made me feel less alone.

  2. She is SOOOO gorgeous!! And that really stinks about your first experience with the geneticist. I'm sorry. :-( Our geneticist is more of the "let's talk about what your child will need going forward" variety. She's awesome. She calls for bloodwork to test for very specific things common with people with Ds, she calls for important x-rays at certain times, etc. She knows what our kids need and when to be able to prevent or stop health issues before they become an issue, and to be proactive in their development. If you have the option of finding a geneticist that specializes in Ds (we have 2 in our area), that's always best, but I know they're few and far between.

    1. That's the interesting thing about where I am Becca, the geneticists only consult at the hospital. Our primary care giver is the pediatrician who orders and follows up on all the tests. That's why it was so pointless. Because we have this really great Dr who is on top of all these things. Like it couldn't wait? We have her whole life to research and understand what DS means for her. We didn't need to be bombarded one day after I gave birth and the same day my baby was admitted to the NICU for monitoring.

  3. I do think doctors and the geneticists could be more positive about Down Syndrome over all. But, I was okay with the diagnosis so for me it was an opportunity to ask questions, which I liked. But I do think that we need to educate these people to explain Down Syndrome in a better way. Yes, list those physical characteristics (which I think are adorable). Then talk about all the possibilities, all the things these kids are capable of. Show us pictures of families and kids with Down Syndrome etc... The problem is, most parents in the beginning don't want to hear the positive yet. They are still grieving and confused and asking all the "why my child" questions.