What I Thought I Knew

This post is long. I completely understand if you don’t make it to the end. I’ve had a post like this on my mind for the last 6 months so I’ve had a lot of time to talk about it. Then I read an amazing blog post and decided it was time to finally write about this.

A gentleman in Seattle wrote about an experience he had at his local Starbucks. He thought he knew about Down syndrome, but an employee there changed his mind. You can read his experience here. (It’s a very open and honest piece – it may be difficult for some people to read.)

So it made me think: what did I think about Down syndrome before Rowenna’s diagnosis? What do I know about Down syndrome now, just 9 months into this journey?

I can say with absolute honesty that I hadn’t really given Down syndrome much consideration at all. I don’t remember actively thinking about Down syndrome. Any thoughts were in passing – oh, that’s something that happens to older moms. Oh, that’s so rare why bother worrying about it?

Then I gave birth to an individual with Down syndrome. Let me tell you – I apparently had given Down syndrome a lot of thought but just hadn’t realized it.

It’s amazing what pops into your head as you hold your 12-hour-old child. I had an instant mental picture of an adult with Down syndrome. A stereotypical picture – thick glasses with plastic rims, chunky body type, poorly fitting clothes, bowl haircut. Someone who bags your groceries or picks up your tray at the local fast food restaurant. I heard that voice – the difficult articulation, the words hard to understand.

Where on earth did that come from? Honestly, I don’t really remember ever meeting a person with Down syndrome. And Down syndrome isn’t exactly a powerful presence on tv or in movies.

Yet there I was, staring at my brand new baby, my head and my heart filled with these images that were clear as day. It was so strange.

Even more strange was finding an online community of mothers and hearing this same story over and over again – that when they first heard the diagnosis they instantly thought of this adult with Down syndrome.

In a way, I’m glad this image was so clear because it gave me a lot to research. I set out to understand every aspect of my mental image.

Why the glasses? I learned it is common for individuals with Down syndrome to need glasses for near or far vision as well as to correct things like strabismus. There are a couple theories about this. One thought is that low muscle tone makes it difficult for the eye to focus. Ok, that makes sense. Why the clunky plastic frames? Well, even those of us with 46 chromosomes make bad fashion choices from time to time. And glasses frames have come a long way in terms of attractiveness. I shudder to think of the frames I had when I was young, but the frames I rock today (complete with rhinestones, thank you very much) are much cuter.

Why the heavier body type? I learned that hypothyroidism is common for individuals with Down syndrome and that routine screening and good treatments are a fairly new phenomenon. That’s not to say that some of it isn’t just good ol’ genetics (family being on the heavy side) or our sugar-and-fat filled American diet. Alright, I can deal with that. We’ll just make sure Rowenna understands healthy eating and active living and see what happens.

Why the clothes? Sometimes individuals with Down syndrome have slightly different body proportions than the typical population making some clothes difficult to fit “properly.” Being on the short side myself, I know how hard it is to find a decent pair of pants. I have a great tailor. I can introduce Rowenna to this great tailor. And there’s always the tried-and-true method of wearing a dress instead of pants. Living in Wisconsin, this can be a challenge but there are still about 4 months a year during which I wear nothing but dresses and only the occasional pair of jeans.

Why the bowl cut? I think this falls under the same category as the glasses: everyone is capable of making unfortunate hair choices, regardless of the number of chromosomes. Ask me about my middle school bangs sometime.

Why the job at the supermarket? Someday I’ll get around to writing a post about why the Social Security Disability system in this country is a complete load of crap, so to summarize for now: I’ve learned that making a true living wage isn’t really an option. Also, why not work at the supermarket? Striving to understand this stereotype caused me to really examine my beliefs about success. Who says you have to go to college or have a professional career to be successful? To be happy? What’s wrong with bagging groceries? You’re performing a vital function at the store and interacting with your community each day. Nothing wrong with that!

Why the difficulties with articulation/speech? In the spirit of honesty, I’m going to tell you what I really thought about this. I honestly thought that the cognitive disability that goes with Down syndrome somehow caused this inability to articulate.

I am SO embarrassed to admit that but I’m willing to say it because I’ll bet I’m not the only one who has thought that.

Anyways, turns out that the difficulties articulating are mostly a function of muscle tone and other development in the mouth. People with Down syndrome have proven time and again to have normal receptive language skills (in other words, they absolutely understand what you’re saying) and normal expressive language skills (in other words, they know what they want to say). Sometimes it’s just a matter of physically articulating the words, and sometimes it’s a matter of being able to  assemble a sentence.

Understanding the roadblocks to speech will help us to help Rowenna be as expressive as possible. She has speech therapy and we’re teaching her to sign. We speak to her quite a bit and we practice conversation skills. We don’t worry about her ability to communicate with us.

I have learned so much and have so much left to learn. But most importantly, I’ve learned to take a fear and knock it down with knowledge.

So, I’m glad that Mr. Fallihee decided to open his heart to the world. I’m glad I was able to read his thoughts and even happier to hear that he has a new understanding of Down syndrome. He took his own fear and knocked it down with a little knowledge. I’m glad it gave me the inspiration to finally write all this down.