Teaching Kind

The other morning while going for a walk, Josie asked me, “Mom, what should I be when I grow up?”

After going through a couple of suggestions and explaining what they were, I said to her, “Do you know what I want you to be when you grow up?”

“What?”, she asked.

“Kind.”

After the sass and arguing I’ve been getting from her for the past two weeks of summer break, along what happened a couple of days ago, I find myself focusing on being kind and respectful more than anything with her.

Earlier this week, we were at AT&T getting some help with our phones, which of course meant we were there for an hour. Moses had been doing his thing – making his rounds, telling people “Hi”, tagging some people on the leg as he walked by and giving others hugs. At one point, he wanted something in my purse, so I gave him my tin of Altoids. He walked away shaking it happily, and then came walking back to me empty handed. As I got up to find where he had put it, a woman who had been sitting by the door was coming toward me holding my Altoids. We laughed as I thanked her for giving it back and I told Moses to stop giving my things away.

Moses was smitten. He kept going back to where she was sitting on the ledge by the door and would wait for her to put her hand out and he would touch it as if he was touching a cloud. Seriously, I wanted to ask her if I could feel how soft her hand must be with the way he kept going back to to touch it.

After a bit, he walked away and I followed him. When I looked back a few seconds later, Josie was standing about 10 feet away from the woman and other woman who was with her, and she was just looking at them with a weird, shy smile on her face and had her fingers in her mouth, which she never does. I told her she could go say “hi”, which I normally don’t have to tell her, but she stayed put. I could tell the women were getting a little uncomfortable with the way she was acting towards them, so I told her to stop acting weird and either say “hi” or go sit back down. She walked back toward the bench and I went to go after Moses again. When I came back around, she was staring at a man wearing a safety vest. I took her over to the table where Tyson was and told her that it wasn’t nice to stare at people and asked her why she was acting weird. She said she didn’t know. Thankfully, we left a couple of minutes later.

Later that evening, we were outside and she came over and sat next to me. It was my turn to ask her a question.

“Why wouldn’t you say hi to those ladies at the store?”

“I don’t know. I didn’t know them.”

“You didn’t know the lady that was talking to Moses, but you went right up to her and even gave her a hug. What was different that you would talk to her and give her a hug but you wouldn’t say hi to the other ladies?”

“Well…it’s because their color wasn’t this.” She pointed at her arm.

Thank God I’m in education and could recognize that this was about to turn into an important teachable moment. I was able to take a deep breath and think about how to best respond to the answer that broke my heart.

I asked her, “Why does that matter?”

“Because I don’t like when people have brown or black color. I don’t like to talk to them.”

In my head, I was screaming “THAT IS NOT TRUE! YOU’VE TALKED TO PEOPLE WITH BROWN OR BLACK SKIN! WHERE IS THIS COMING FROM???”

Taking another deep breath, I responded to my daughter as calmly and clearly as possible.

“Josie, do you know what this is?” Pointing to my arm and to hers. “This is skin. Skin comes in all different colors, and the color of peoples’ skin is never a reason to not talk to them. Skin color does not matter. What matters is how people act and treat other people. Does that make sense?”

Josie nodded. But I wasn’t finished.

“Those ladies at the store were very nice. They were being kind to your brother and were trying to be nice to you. Were you being nice to them?”

She shook her head no.

“Remember that man in the safety vest? He had your color skin, but guess what? He wasn’t nice. He said something very not nice about you and your brother. That’s why I wanted you to stay away from him. It had nothing to do with the color of his skin but because of how he was acting.”

We then talked about one of her friends at school that has brown skin and how they’re friends because she’s nice. I ended the teachable moment by telling her, “You better never not talk to someone again because of the color of his or her skin, do you understand?” Thankfully, she nodded her head yes.

By the end of our conversation, I felt a sense of relief even though it wasn’t an easy conversation to have. It would’ve been easy to excuse Josie’s behavior to she was feeling shy. But in my heart I knew that wasn’t it. It would’ve been easy to just ask her if she wasn’t talking to those women because they had black skin. But as I’ve learned in the last almost 5 years, this parenting thing isn’t always easy.

More than anything, I want to raise my daughter to be kind. In a world in which people are still judged based on skin color, socioeconomic status, religion, number of chromosomes, etc., I want my daughter to simply show kindness and respect to all people. I want her to choose friends based on whether or not they treat her and others with kindness. I want her to choose a husband that treats her and others with love, kindness, and respect. I want her to be chosen to be a friend and wife for the same reasons.

I think of the people in history who have worked to teach people that gender doesn’t determine jobs, skin color doesn’t determine where you sit on the bus, and the answer to an extra chromosome is not institutionalization. While incredible progress has been made, it doesn’t mean the lessons don’t still have to be taught.

So at this young, impressionable age of almost-five, I find myself in a position as her mom to make sure that I’m not turning a blind eye to or excusing her behavior because of her age. I have to remember and understand that she is learning every day. I have to have tough conversations with her. I have to listen to her and help her see the errors in her thoughts and behaviors. Above all, I have to make sure that I am teaching her not just through words but by my own actions. I know that not everyone is going to show Josie or even myself kindness and respect. But I know from experience that I sleep much better at night when I can look back on the day and know that I did my best to be kind and respectful. I look back at how I’ve treated others, and at how I have been treated, and know that kindness and respect are not often regretted.

Back to our walk, Josie ended up saying she wants to be a doctor when she grows up. My response? “Be a kind one.”

 

Running On E

You can’t pour from an empty cup.

That’s the thought that has been running through my head.

Because mine is about empty.

Tonight I have gotten to work on refilling it.

This kids are at my in-laws. My husband is out celebrating the end of his school year.

I am ignoring the piles of clothes covering the dining room table that need to be put away and the mess of papers littering the kitchen counters. I’m going to let the dishes stay in the dishwasher until tomorrow and not care that the bathrooms haven’t been cleaned this week. I decided against going shopping for a new swimsuit or flowers that would’ve likely died before I could plant them. The top of my dresser has been collecting papers and pictures and dust for months, but I’m not going to clean it tonight.

Instead, I took this evening for me. I have gotten to sit on the couch and eat too many chips and french onion dip while watching TV. I got to finally take full advantage of the free vacuums at the new fancy car wash. (I don’t even want to know how many Cheerios, Fruit Loops, and penguins were in the cracks of those car seats…). I was able to turn off my phone and sit quietly with my thoughts for 45 uninterrupted minutes. I’ve taken the time to write.

I know that I’m in the season of life that requires me to take care of others in a big way, both at home and at work. But that doesn’t mean that I have an unlimited reserve of mental, emotional, and physical energy to unceasingly meet the needs of those who depend on me. That I don’t need to have my own needs met.

Right now, I’m tired.

Mentally.

Emotionally.

Physically.

Which is why I need time like this to myself. It’s quiet times like this that I am able to think, reflect, and pray for direction.

Some may think it selfish for me to be as thankful as I am to be at home alone this evening. I know there was a time I thought it was a selfish thing to want to do, let alone actually do it.

But even Jesus needed time alone to think, reflect, and pray, right? There were times that he told the twelve guys following him to leave him alone. I think that’s pretty understandable considering he spent his days being sought out to heal the sick and raise the dead, feed the masses and turn water into wine, and somehow also find the time to teach life-changing lessons in ways his students could understand. He knew there were times that He needed to take time for himself up on a mountain or in a boat in the middle of the sea. So He did. And then He was able to come back and continue serving others.

I know that doesn’t quite compare to what I do on a daily basis for my husband, children, geriatric dog, friends, students, etc. But like Jesus, after spending my days serving others, there comes a time that I need to stop.

Be still.

Be quiet.

Pray.

Tomorrow when I wake up, my cup will be refilled. It may not be overflowing. It may not even be to the top. But at least I will feel like I have something in there to pour out for others. Because you can only run on empty for so long.

I hope that you will make the time and take the time to make sure your cup is filled, too.

The Other R-Word, Part 2

A few months ago, I wrote about my desire to put an end to associating an unborn baby with Down syndrome with the word ‘risk’. Because I feel strongly about the power of words and their ability to change (or even save) lives, I decided to follow-up with Healthline about the fact that it used the word ‘risk’ twice as much in reference to Down syndrome than several other birth defects and disabilities. (You can read the email I sent to them here.)

I sent that email on February 24. In my head, I had a grand vision of making a post on March 21, which is World Down Syndrome Day, to share that Healthline had made revisions to reduce the number of times that R-word was used on its webpage.

Like many visions, it didn’t happen. Disappointed, I wondered if I should really even pursue it further. I mean, I even had someone tell me, “It’s just the way it is.” when I was talking about how I didn’t think it was right that ‘risk’ was used so much more to describe Down syndrome than other conditions.

But then I remembered my response to that. “That doesn’t mean it has to stay that way.”

So on March 26, I wrote Healthline again. (You can read the email here.) This time, I gave suggested revisions using words like ‘chance’ and ‘probability’ – both of which honor the unknowns pregnancy bring in reference to having a baby with Down syndrome but that don’t carry the negativity of the other R-word.

On March 27, I had this reply in my inbox:

Dear Jenny,

Thank you for writing again and I apologize for not resolving this sooner. I had spoken with our social media editor last week (who had also received a message on this issue) and I had mistakenly thought that our production team was already making the changes you requested, which turned out not to be the case. So I have gone in again myself and made further edits on this article with the help of your recommendations. I hope that the change of language is more appropriate now. Apologies for the delay and thank you for your communication. Please do not hesitate to contact us in the future.

Best,

John Bassham
Editor II, Feedback and Updates
Healthline Media

Of course, this email got totally buried in my inbox and I didn’t see it until last week. As soon as I finished reading it, I went to the Healthline page about Down syndrome. sure enough, John had made the changes! Not only did he use some of the suggestions I had given, he made a couple more, including changing the heading that once read “Risks” to “Statistics and considerations”.

I finally replied to Mr. John Bassham today:

Dear John,

Thank you for your email and especially for the changes you made to the Healthline article about Down syndrome which reduced that the number of times the word ‘risk’ was used in the article from 11 to 4. When I read through it with the revisions, it definitely sounds much more informational and neutral in providing information about Down syndrome. I also appreciate your attention and revision to the previous heading of Risk, and that you renamed it Statistics and Considerations.

I hope that future readers will find and appreciate that your website’s article promotes an understanding of Down syndrome but that it does not make it sound as though it is a risk to be avoided. Again, thank you.

Sincerely yours,

Jenny Moyers

Like so many other social issues, just because something has been a certain way for however long, it doesn’t make it right and it doesn’t mean it has to stay that way.

For me, I will continue fighting for the Down syndrome community, especially for those that haven’t even had a chance at life yet. I will continue to work to educate people that a baby with Down syndrome is not a risk to be avoided. An unborn baby with Down syndrome is not a cancer to be cut out. A baby with Down syndrome is a person with the potential to make world a better place when given a chance at life.

(Click here to read the original ‘The Other R-Word’ post.)

Choosing Grateful

A couple of months ago, I got to take my daughter on a quick trip to Florida to visit my parents. The first full day we were there was thankfully the most beautiful, perfect day ever. Blue skies, white sand, a little breeze, and a very excited 4-year-old. Watching her run back and forth to get water for the sandcastle her Daddy O was building for her, getting to chat with my Mom, and feeling the sand between my toes was a little slice of Heaven on earth.

We had just gotten settled on the beach the second morning when I got a text delivering heartbreaking news about a good friend. As hard as I tried, I couldn’t hold back the tears and began thinking of what I could’ve said or done differently to give her more help and support. After talking to my mom about it and accepting that there was nothing I could do from where I was at other than pray, I decided to take a walk. Josie and my mom went with me, and it didn’t take long before Josie’s endless chatter and excitement over finding shells and running after seagulls helped me to feel better. After a bit, Josie and my mom headed back while I kept walking and looking for shells. The waves were a little more rough than the day before so finding shells was a little harder, but then I found a little tide pool that had some of the tiniest shells I had ever seen and I spent a good amount of time hunting for them and clearing my head.

On my walk back, I saw another pretty shell and when I picked it up, I was so excited at how beautiful it really was. It was a small lightning whelk, one of my favorite types, whose shape was perfectly intact and the most beautiful shade of soft white. If was like the Audrey Hepburn of shells. It was like finding the perfect pair of red high heels when you weren’t even shopping for shoes. Or finding your favorite bottle of Pinot Noir on sale.

And then it was gone.

When I put my hand back in the water to get the sand off of my elegantly beautiful shell, the pull of the wave pulled it right back into the surf. Immediately frustrated and devastated but still hopeful, I frantically looked for the shell while trying not to look like I wasn’t playing with a full deck of cards. After about a minute, I knew the chance of actually finding it was extremely slim, but there was that part of me that kept thinking, “If you keep looking just a little bit longer, you might find it.”

So I did. I kept looking for another couple of minutes. And then it hit me, like the wave that robbed me of my find: by focusing all my attention and effort on that one small shell that slipped out of my hand, I was completely disregarding the handful of beautiful shells that I was still carrying. Not to mention the ones I had found the day before.

How many times have I done that? Focused so much on what I didn’t have anymore, or even what I didn’t have in the first place, that I lost sight of what I do have. Finding people or things to blame instead of finding people or things to thank or be thankful for. Choosing to be ungrateful over grateful.

I think back to finding out that my baby would have Down syndrome. How easily I could’ve chosen to be mad at God for taking away my “perfect” baby or focus what my baby wouldn’t be able to do in his or her life. To find all of the negatives that were likely going to flood my life because of that extra chromosome.

If I had done that, would I have been able to rejoice in all the ultrasounds and tests afterwards that showed a healthy, growing baby? Would I have been able to feel the excitement that came with each passing week that brought me closer to meeting the newest member of our family? Would I have been able to through my hands up in victory when the doctor announced that I had just given birth to the boy I had prayed for?

Probably not. Because an ungrateful, negative mindset does not lend itself to finding positivity, let alone joy, in such things.

Having a grateful, positive mindset doesn’t mean that you aren’t affected by the wide-range of hardships that life brings. It doesn’t protect you from feeling the hurt, disappointment, sadness, or frustration that comes with life’s downs, such as losing the most perfect lightning whelk shell or learning of an unexpected and life-changing diagnosis.

We all know that life is far from perfect. Everyday brings challenges and obstacles that can rob us of our sense of safety, security, happiness, etc. Some of those things are small, some are ginormous. Some affect us for a minute, some for the rest of our lives.

Unfortunately, we cannot control the next snag we hit, the next hurdle we have to jump, or the next tragedy we face. We can, however, control how we respond. It doesn’t mean that we can necessarily snap our fingers and poof! change our feelings, but it does mean that we can choose to be grateful for what we do have. And that will be different for everyone. For some is might be a relationship, for some it might be their memories, for some it might be a prized possession, or for others it might be the hope for a better tomorrow. I don’t think it matters what you choose to be grateful for as long as you choose to be grateful.

One thing I’ve learned about having a grateful, positive mindset is that it doesn’t just benefit you. It will also absolutely have an impact on those around you, especially the people closest to you. If I had continued being frustrated about losing a shell I had in my possession for all of 30 seconds, I would have been sure to affect Josie and my parents. I mean, how would they not be affected by a pouting 38-year-old woman?

Or this evening when my darling son pulled the plate of deviled eggs off the counter this evening and I immediately expressed my frustration by loudly saying, “NO! NOT NICE!!!” and giving him my best disappointed-mom look while I cleaned up the mess. But then instead of staying mad about the six delicious eggs I had to put down the garbage disposal, I chose thankful for the 4 that were salvaged. (And for the 3 that I had eaten when I was making them.) The result? A pleasant, enjoyable family meal was had by all.

Life is hard. There will be ups and downs. I hope that you will choose to be grateful for your ups.

Listen Up

“What’s the difference between hearing and listening?”

That’s one of the questions I ask my students when we do our lesson about whole-body listening. There are usually a few students that are able to answer that question fairly accurately – usually because their teacher had recently gone over the same lesson with the class and they were actually paying attention.

I’m sure that there are some much better ways to present the technicalities of the difference between hearing and listening, but I like to keep things pretty simple (not just for my students but just as much for myself). Hearing just happens – you don’t have to work at it or try to do it. Noises and sounds hit your ears and stuff happens in your brain without you really thinking about it, but you don’t really pay much attention to that “stuff”.

Listening takes work. Listening takes thought. When my students and I talk about whole-body listening, we discuss how important it is to make sure your eyes are looking at the speaker; your ears are listening to what the speaker is saying; your voice is quiet/off; and your body is calm.

I’ve done that lesson for several years now with some variations for the different grade levels but the overall content and message is the same. But then last year, during one of my 2nd grade classes, we added in another step: Your brain is thinking.

It was one of my “duh” moments in my job. “Duh” your brain is thinking about what is being heard when you’re listening. That’s exactly what the other steps are designed to do – to help the listener focus on the speaker so that her brain can really think about what is being communicated.

After I finished having my “duh” moment and questioning if I really needed to teach that fifth step, I realized that the answer is a resounding, “YES”.

We are surrounded by distractions. It can be as simple as a mosquito buzzing in your ear or a bird chirping in a tree nearby. It can be as complex as a major life decision buzzing around in your head waiting for you to find the right answer or trying to decide between the Tempranillo or the Grenache or if you should just stick with the Cabernet. And then there are the parts of our lives that might be so ingrained into our daily routines that we don’t think of them as a distraction: TVs, phones, tablets, children, spouses, the never-ending to-do list.

As a school counselor, I’ve been trained to listen. I’ll be the first to admit that when I first started the Skills class to become a counselor, I was a horrible listener. Horrible! I was the worst about thinking of my own response before the other person finished talking or playing a game on my computer while I was talking on the phone. After A LOT of instruction and practice, I like to think that I’ve gotten pretty good at keeping my visual focus on the person talking to me, staying quiet as he speaks or takes some time to reflect on things, keeping my body calm even when what I’m hearing makes me want to grab the person by the shoulders and shake some sense into her, and of course, listening to what the speaker is saying. When a student is talking to me, I am consciously working to minimize my distractions. I am not looking at my phone or my computer. I am putting my mental to-do list aside and being as fully present with the student as possible. I am repeating things back to the student to make sure I understand what she said, and sometimes to help her understand what she said. I am working to help the student feel better, and if possible, figure out solutions to whatever issue he or she is facing.

Do I stay in this stellar-counselor-whole-body-listening-mode all day every day? Absolutely not. I am 100% guilty of turning off that whole-body listening. I let those distractions right on in. Do I try to really understand every completely fabricated story Josie tries to convince me is true? Ummm, no. Do I look at Moses every time he’s hanging on my leg because he wants another snack? Ha! On the rare occasion that someone actually calls me on the phone, do I give my full-fledged attention to that person? I wish I could answer yes to that one, but I have the bad habit of checking emails, looking for the latest toy Josie can’t find, or trying to figure out what snack Moses is currently wanting. To expect myself or anyone else to be a model listener at all times is simply unrealistic. However, I know that I can and should do a better job of listening.

This is where I want to challenge you as I’m going to challenge myself. The next time someone is talking to you, I challenge you to stop what you’re doing. Stop typing even if you haven’t finished the email or text. Stop looking at the TV. Turn it off. Stop looking at your phone. Put it down. Face down so you can’t see who that next text is from or that you got a new Facebook notification. Just stop.

Then, listen with your whole body:

  • Look at the person talking to you. Keep your visual focus on that person the best you can.
  • Listen not only to the person’s words but also pay attention to nonverbal cues such as tone and body language.
  • Let the person talk without interruption. Not only does this help you to listen, it also communicates respect to the speaker. 
  • Keep your body calm. Now is not the time to start cooking supper or looking for your car keys so you can make your escape.
  • Think about what the person is saying. If you find yourself thinking about how you’re going to respond to a comment, stop. Put your focus back on the person’s words, not the ones you want to say. You’ll get your chance to respond and will want the person to do the same for you.

Why am I challenging myself and others to work to on our listening skills? Because listening is one of the most important things we can do for others and for ourselves. Because listening is a essential part of communication, oftentimes more important than the talking part. Because communication is key to establishing and maintaining relationships. Because we all need someone to really listen to us. Because, for many of us, we have young people watching how we listen to them and others and will learn do to the same. And because when we don’t listen, we miss out on more than we may ever realize, especially from the people who mean the most to us. So listen up…

The Blue Elephant in the Room

I vividly remember one of the first times I saw a child on a leash. It was at West Park Mall and I judged those parents hard. I was all “Kids are Humans, Not Pets!”. Most likely I said more than once that I would “never” put my kid on a leash. Clearly I was not yet a parent of a two-year-old boy that had finally mastered the arts of both walking and completely ignoring the words “no” and “stop”.

It only took one evening consisting of a trip to Target where he refused to sit in the cart and my poor Dad had to chase him all over the store followed by dinner at Culver’s where he refused to stay in the high chair and walked around begging food from strangers for me to start trying to figure out how to not take him anywhere ever again. But when I ran into a fellow mom from my hometown who had her young son safely strapped into a backpack harness with a leash, I knew I had found the answer to my delimma.

So lo and behold a few weeks later Santa brought Moses a super cute blue elephant backpack with a nice leash attached that had gotten good reviews on Amazon. Last week I finally got to try it out.

Because of the flat feet and low muscle tone that came with having Down syndrome, Moses gets to wear orthotics to help stabilize his feet and make sure that he learns to walk properly. No big deal, right. Actually, it’s not UNTIL trying to find shoes that will fit. I’ll put trying to find shoes in a toddler size 6 or 6.5 right up there with going to the dentist or gynecologist. Necessary but not a whole lot of fun. (I will say that there are some really cool shoes for kids with braces in a size 10 or above. Hopefully he’ll have graduated to inserts by then, but if not, then at least I have hope that it won’t be so hard to find shoes for him.)

One of the tricks I learned from the last set of braces was to get shoes in extra-wide and take the insoles out. Another thing I learned is that shoes with a velcro strap make putting the shoes on a lot easier and quicker as opposed to shoes that tie. And since Moses has proved to be quite apt at sliding his foot right out of both the shoes and braces, easy and quick are must-have features. I have also learned that the velcro strap on most toddler extra-wide shoes are not long enough to accommodate chubby toddler feet encased in braces even after taking the insole out. Fun facts, huh?!

After searching online and coming up short, I decided to just take him to our local Shoe Carnival because I was told it carried extra-wide shoes that should work. Josie was at a basketball game with Tyson, so I also saw it as the perfect opportunity to use the leash. I was so optimistic that it was going to go well that I even thought we might go to Target, too! So when we got to the shoe store, I was practically whistling as I strapped him into his super cute blue elephant backpack and carried him from the van to the store. Once inside, a friendly store associate asked if I needed help finding anything, and I told her I was looking for extra-wide toddler shoes. She said would show me what they had, so I put Moses down, held on tightly to the leash, and off we went.

It started off well as we followed the associate, Moses on his leash, me holding on to it. When we got to the section with his size and she started showing me what they had, Moses seemed content to sit down and pull shoes and boxes off the shelf. Now, I know that this doesn’t necessarily sound like a good thing, but he was staying in one place and I 100% planned to clean up his mess so it was absolutely a good thing. I totally felt like I was winning.

That good thing lasted about one whole minute, which was how long it took for Moses to lose interest in the shoes and want to walk around. As the associate was showing me the shoes that came in wide (not extra-wide), Moses walked as far as his leash would let him. And then he stopped. And he was not happy.

That’s when it got fun.

There I was, trying to pay attention to what the sales associate was telling me and showing me while also holding on to the leash that Moses was pulling against with all his might. At this point, I got the feeling that the associate wasn’t quite sure what to think about the situation going on in front of her. Kinda like she was maybe thinking, “Is this okay? Does that little boy have Down syndrome? Can she put him on a leash like that?” And my mental answer to all of that was, “Yes. Yes. And yes.”

As I was trying to explain that I didn’t quite know what size he needed because of the braces (which I had of course forgotten to bring with me), the associate was looking at me like I was an idiot and Moses was really starting to get mad. He started yelling and tried so hard to keep going forward that he ended up falling on his little butt. I couldn’t help but to laugh at him and then proceeded to ask the associate to give me two of the shoes in both a 6 and a 6.5. She gave me a really confused look like she was wondering if I had ever actually bought shoes before, so I said, “I’ll just take them home, try them on him with his braces, and then bring back the ones that don’t fit.” She then helpfully informed me that I could in fact do just that.

She started walking towards the registers and I gave Moses’ leash a little tug and gave a cheery “Let’s go!” His response was to yell at me and try once more to go the opposite way. So I picked him up, carried him to the register where he immediately wanted to be put down. Leash firmly in hand, I put him down and turned my attention to the associate who was helpfully telling me again that I could return any of the shoes that did not fit as long as they had not been worn and I had my receipt because, you know, I’ve never bought shoes before.

After Moses had examined the shoestring display behind us, he was ready to explore the rest of the store. When he felt that dreaded tug of resistance after taking about 6 steps, he surrendered to the leash. As in he flat out laid face down in the middle of the floor and just gave up. You might imagine the look of confusion/concern on the poor sales associate’s face when I just laughed at him and said, “Life is hard, isn’t it, bud?” When I swiped my credit card to pay for the shoes that were undoubtedly all going to be returned (because they were wides, not extra-wides), part of me wondered if the information from it was going to used to report me to Child Protective Services.

I got my bag and receipt, put Moses on his feet, and let him lead the way to the door. Before picking him up to go back out to the van, I stopped to take a picture of him on his leash to send to my friends.

Here’s the thing, I could’ve walked out of there feeling frustrated and discouraged at the lack of understanding that wide and extra-wide are not the same or at the feeling that I was being judged for having a child on a leash – a child with Down syndrome at that. But what good would that do me? Or Moses? None at all.

So instead I just laughed as we drove right past Target to go home. I laughed at that poor sales associate’s reaction to the whole thing. I laughed at Moses’ reaction to his leash. I laughed at my own reaction to it all.

Life hands us all kinds of ups and downs, and there are some that we can and should be frustrated or discouraged or sad or mad about. But there are so many that we can just shake our heads and laugh at.

I’m thankful for the laugh I got out of that highly unsuccessful trip to the shoe store and the laughs I’ve gotten out of telling others about it. And I hope that maybe that most helpful sales associate saw that a two-year-old child with Down syndrome reacts pretty much just like any two-year-old child does when he doesn’t get his way. I hope that one day she has a two-year-old boy and thinks of us when she thinks of buying a leash for him. And I hope she learns that wide shoes are not the same as extra-wide.

The Other R-Word

About a month ago, I was talking to my sister and was trying to remember the three types of Down syndrome. It was still on my mind when I went to bed a little while later, so I decided to look it up before I went to sleep.

I came across a website called Healthline that had the information I was looking for (Trisomy 21, translocation, and mosaicism). I ended up skimming through the article which had the typical general information about Down syndrome, especially highlighting the delays and difficulties that can accompany the extra chromosome. It doesn’t really faze me to read those things anymore, but then I read this in the Screening section:

“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”

That fazed me.

Medically speaking, when I think of risk, I think of life-threatening conditions. Down syndrome is not life-threatening. It’s life-enhancing. If you talk to almost anyone who has a personal connection to a person with Down syndrome, the only “risk” that is involved is that you may experience more love and joy than you ever thought possible. If you talk to a person with Down syndrome, they likely are not going to refer to their life as “risky”. A baby with Down syndrome is not a risk. It’s a baby. And like any baby, it can soften the hardest of hearts, bring a smile to the most lonely or unhappy, and has unlimited potential to achieve amazing things.

So after reading those two sentences, I scrolled to the bottom of the page and found a Contact link. When I clicked on that, it took me to a page where I could report an inaccuracy. So I did:

To Whom It May Concern:

While reading your information about Down syndrome (https://www.healthline.com/health/down-syndrome#outlook), I came across the following statement in the Screening section:
“Some women choose not to undergo these tests because of the risk of miscarriage. They’d rather risk having a child with Down syndrome than lose the pregnancy.”
Stating that the woman would rather “‘risk’ having a child with Down syndrome” is inaccurate. It is also extremely offensive. It should simply state “They’d rather have a child with Down syndrome than lose the pregnancy.” If you insist on using the word “risk”, it should be to say “They’d rather have a child with Down syndrome than risk losing the pregnancy.”
Thank you for your attention to this inaccuracy. If the medical professional reviewing this statement has any questions, please contact me at your convenience.


Sincerely,
Jenny Moyers

Guess what?! It worked!!!!!!!! I am so excited so share that when I checked that same link and section last night, a month later, that second sentence has been changed! It now states:

“They’d rather have a child with Down syndrome than lose the pregnancy.”

After relishing in my victory for a couple of minutes, I looked back at the entire article and I noticed that ‘risk’ seemed to be used a lot. That made me wonder exactly how many times it was used. So in true researcher fashion, I copied and pasted the article into Google docs and hit good ol’ CTRL + H to find how many times ‘risk’ needed to be replaced.

10

Ten times that R-word meaning things like “a situation involving exposure to danger”; “the possibility that something unpleasant or unwelcome will happen”; “a person or thing regarded as a threat or likely source of danger” was used to provide information about Down syndrome.

You may be thinking, “Ten really isn’t that big of a number. Don’t be so sensitive, Jenny.” Well just for you, I decided to look up a few other birth defects or disabilities a baby could be born with to see if ‘risk’ was used as often in those articles. Using my same highly scientific “Cut & Paste, Find & Replace” research method, this is what I found:

  • Birth defects (overall) – 14
  • Cystic fibrosis – 5
  • Congenital heart disease – 4
  • Cerebral palsy – 3
  • Spina bifida – 1

The word ‘risk’ is used twice as much in reference to Down syndrome than four other common disabilities that can occur in babies. And that’s with one of the ‘risk’ references taken out. (Go me!)

In the United States, approximately 67% of fetuses determined to have Down syndrome are aborted each year, and there are some researchers that believe that percentage could be higher. That percentage is significantly higher in other countries such as the United Kingdom, Iceland, and Denmark. Some people will point out the population size of the different countries, as though that’s an excuse to kill a fetus that will likely develop into a baby with Down syndrome.

But when such a bleak picture is painted by medical professionals and literature by using a word like ‘risk’ that indicates that the fetus poses a danger or a threat, while I’m devastated by those numbers, I can’t say I’m surprised by them. Yes, I absolutely support a woman choosing to do genetic testing to learn if her baby will likely have a genetic condition such as Down syndrome. Some of us like to have a feeling of being prepared to meet the different needs our new baby might have (as if you can ever truly be prepared). The word ‘risk’, however, elicits feelings and images of doom and gloom, unpleasantness, maybe even danger. (Insert eye-roll at the thought of Moses being dangerous. Unless cuteness is dangerous, then he totally is.)

A person that hasn’t had the experience of having a child or a loved one with Down syndrome or other disability may not understand why this seemingly little word is such a big deal. If that’s the case for you, let me ask you if you would refer to a baby with a disability or birth defect as a retard? Gimp? Freak?

No?

Why not?

Oh, because those words are offensive?

Then let’s stop associating an unborn baby with Down syndrome with risk. It’s not a risk. It’s a baby. A baby that deserves the chance to grow up to be its own unique and wonderful person.

Please, if you know someone in the medical profession, encourage them to consider the power of their words. It can literally change, or maybe even save, a life.

And thank you, Healthline, for taking this seriously and making that change. Hopefully we can talk soon about those other 10 usages…