Reminder

I would love to think that this blog is not necessary. That having a son with Down syndrome is not a big deal anymore. No struggle. It’s just like having any other child. I would like to believe that, but just yesterday, I was reminded by a co-worker that people haven’t changed much.

Why do they need to know?

At this stage in my life, people don’t need to know that I have a son with Down syndrome, and I do not see the need to point it out. I have three thriving children: a daughter working in New York City for a charter school and business, another daughter who just moved to Arizona to be
a nurse and a son who works on a farm. Why should I tell them that William has Down syndrome? I don’t know, but it always comes up.

Expectation

When William and I lived together I was used to it. I almost expected it. A typical example goes like this. When William was at the age where most kids get braces, I took him to the orthodontist. His sister, who was already wearing braces had started her treatment the year before, and William’s dentist suggested that the same orthodontist should take a look at William, whose teeth are quite crooked.

This orthodontist had treated William’s sister, so I knew what to expect. When I asked about getting molds taken of William’s teeth, the nurse said, we will skip that. I asked her why. She responded with, They don’t like that. Those of you without a child who is slightly different may wonder who They are. It registered immediately with me.

What I should have said

If I had been the perfect advocate for people with Down syndrome, I would have had some empathy for this nurse, who was ignorant about the world. I would have said, it goes like this: everyone is his or her own person. Some people have straight teeth, some people have crooked teeth, and some people don’t have any teeth at all, but all of these people are their own person. It is the same with children, some have red hair, some have brown hair, some are big, some are little, some can talk and walk, and some can’t, but they are all their own person. People who look alike, don’t always react to things the same way. Then she would have understood that not all people with Down syndrome have a sensitivity when it comes to having molds taken of their teeth.

What I said instead

Instead, I said, when his sister got braces you never said that They with red hair don’t like getting the mold; therefore, we won’t take a mold for her. I assume that the They you refer to here is anyone who has Down syndrome. I might even know the one person who didn’t like getting the mold who happens to look a lot like William. (There were only two people Will’s age living in the town who had Down Syndrome at the time.). He also loves cottage cheese and apple sauce and William hates it. Does that mean that everyone that looks like William loves cottage cheese and apple sauce?

She didn’t get it, so we went to an orthodontist who did.

Not a thing of the past

I would love to think that stories like that are in the past. I have been working in Malaysia for about a year, so people do not see me as William’s mom anymore. Here I am a single woman who writes and works in a cubicle just as they do. I am a private person, so people don’t know about me unless they ask.

Yesterday, we were discussing our president-elect and I mentioned a worry about what kind of impact the election would have on William’s funding, which is always a concern of mine. One of my co-workers was much more interested in the fact that William has Down Syndrome than he was about the repercussions of the election. He immediately wanted to see pictures. I was glad to show him all of my three children because they are all so beautiful, but he just wanted to see William, my beautiful William. And I did what I always do, I showed him pictures of my son, but I knew that he was not looking at him the way that I do. I knew that he wasn’t looking at him the same way as he was looking at pictures of my daughter.

Because they do.

I tell this story because this is just the way it is. I know it is my responsibility to educate people about those who have Down Syndrome, so it is easier for the next person who has to follow in William’s footsteps, but that doesn’t mean it doesn’t get under my skin.