Choose Your Focus

On the way home from school today, Josie suddenly asked me, “Would it be hard if I had a disability, too?”

Since I was completely caught off-guard, I asked her, “What do you mean?”

She answered me, “Would it be hard if I had a disability like Moses?”

I thought for a few seconds and gave her my honest answer: “No, I don’t think it would be hard. We would do whatever it was that you needed to live your best life. And we would love you just like we love you right now.”

At that point, we had pulled into the garage. She got out and went inside. By the time I got Moses out of his car seat, gathered all of my stuff, and got inside, the conversation was clearly over. She had already unpacked her backpack, gotten herself a snack, and turned on the TV.

To be honest, I didn’t think anything else about the conversation, either, as I started putting my things away, unloading the dishwasher, and mentally preparing myself to clean the shower in my bathroom. (I would rather dust all day long than clean that shower.)

A few hours later, Josie was across the street playing with her friend, and Moses and I took Opal for a walk. Not long into the walk, he reached over and grabbed my hand. Every few steps he would stop, squat down, count to three, and then he would jump up and I would pull a little to help him go even higher. He loves this game and the laughs we both get out of it are the best.

After a while, he stopped jumping and we just walked hand-in-hand. At one point, I looked down at him and he looked up at me and smiled. It was one of those smiles that shines of pure happiness and love. One of those smiles that catches your breath and your heart.

That’s when I thought back to the question Josie had asked me earlier. And I thought to myself, “This isn’t hard.”

Yes, having a child with a disability comes with challenges. And if I focused on the challenges and dwelled on them day-after-day, then I would surely say it’s hard to have a child with a disability.

However, when I watch my son laugh and play and enjoy this life he’s been given, I find it difficult to see the hard. If he’s not dwelling on the challenges he has, then why should I? What good would that do him? What good would that do me?

There are times to focus on the challenges. When they are having a negative impact on him, they need to be addressed. There are some instances when it is in his best interest to be proactive and attempt to address potential challenges before they arise.

I do the same thing for my child who doesn’t have a disability.

But that’s not where I choose to keep my focus.

Ever since I found out my child was going to have Down syndrome, it has been important for me to remember that I have a choice about how I look at things and what I focus on. And I choose to look at my son and see the strength and determination and joy and love that he has. I choose to look for the solutions to the challenges he faces and focus on implementing them. I choose to advocate for what will help live his best life rather than accept certain things as-is.

There are times that it would be easier to focus on the challenges. To focus on the hard. But if he’s not choosing to do that, then why should I? Why should anyone?

I would much rather focus on that smile that catches my heart.

What do you choose to focus on?

The Perfect Tea Party

This evening after the kids and I had gotten home for the day, Josie went across the street to play with a friend, Moses went downstairs to the basement, and I started putting away dirty dishes and mentally figuring out what needed to get done this evening.

I heard Moses coming up the stairs carrying something that was banging around. When he got to the top and walked past where I was standing in the kitchen, I noticed it was the little case that holds Josie’s tea set. Usually he’ll just bring up one or two cups and the teapot, and he’ll fill up the teapot with water and then pour it into the cups.

He’s been doing this for a couple of months, and his process is pretty cute: He walks around to the back of the sink to turn on the water because he can reach the handle from there without a step. Then he goes back around to the front of the sink where he has a step set up and he fills up the teapot. Then he walks around again to the back of the sink to turn the water off. (Yes, I realize he’s wasting water, and for these purposes, I’m totally okay with that.)

So I really didn’t think much of him bringing up the entire case, nor when I heard the water being turned on and off. At this point I had gone into my bedroom to change clothes and sit on my bed to scroll through Instagram for a minute (or 5).

The next thing I knew, Moses came into the room saying, “It’s ready!” He walked over, grabbed my hand, and led me out of the room. I asked him, “What’s ready? The water?” He nodded and said, “Uh huh.” He took me into the dining room where I saw that he had not just poured water for the two of us, he had put a cup at each chair and had poured water in all of them.

Our real-life dining room table. Almost always full of clutter and never Insta-ready, and tonight perfectly set with eight teacups full of water.

He was so proud of himself as he pulled out a chair and patted it for me to sit down. He was so annoyed with me as I took a picture to capture this sweet result of his thoughtful brain.

I took a drink of the delicious water he had poured, and then he took the cup from me and finished the rest.

Then he walked away, satisfied with his work and that I had enjoyed it, and came back with his Kindle to let me know he was done with me.

I thought my heart would burst thinking about the thought he put into this endeavor.

And I couldn’t help but to think about the doctors who told parents to send their babies with Down syndrome to institutions where they would be kept “comfortable” as they would never be able to live a quality life according to their standards. Or the parents that listened and missed out on knowing the beautiful human that was gifted to them.

I can’t help but to think of the doctors even today that find no value in a baby with the wrong number of chromosomes. Or the parents who take the advice of those doctors, and even friends and family members, and abort a baby that could have Down syndrome and hope for a “normal” baby next time.

My heart hurts for those perfect babies and children that never got a chance to show exactly how amazing they were and just what they really were capable of doing. Who never got a chance to let their light shine. I hate it for the parents who missed out on the perfect tea party because of misconceptions and stereotypes that still plague people with Down syndrome.

As I walked around the table wiping up the spilled water around the cups so thoughtfully placed at each seat, I couldn’t wipe the smile off my face because here is a little boy that not too long ago would’ve been assumed to be able to do little more that breathe on his own, planning and setting up a tea party anyone would be lucky to get to join.

The Magic of Acceptance and Inclusion

A few weeks ago, my parents gave my brother, sister, me, and our families the gift of a Disney cruise to Alaska. There were so many amazing things about the entire trip – especially getting to have our entire family together for a week. However, there was one experience that stood out for me and I will never forget it.

On the third day of the cruise, the ship docked in Skagway, Alaska. We spent the morning driving up into the mountains and enjoying seeing the beauty of the mountains, lakes, and waterfalls that surrounded us. And by we I mean Tyson and me. Josie and Moses were bored to tears.

That afternoon, Tyson and Josie went ziplining so I took Moses back to the ship. We went up to the pool deck where there was a place for him to get some chicken strips and for me to get an adult beverage.

While we were sitting at our table, one of the ship’s lifeguards walked by. He saw Moses and said, “Hey buddy! How are you?”

After a morning of sitting in a vehicle bored out of his mind, Moses wasn’t in the best of moods, so he responded with a very firm, “No.”

Undeterred, the lifeguard continued to try to talk to Moses and get him to engage with him. Also undeterred, Moses refused his efforts.

The lifeguard said, “What’s your name?” (Side note – That he asked Moses directly what his name was instead of asking me earned this guy a gold star in my book. He did not assume that Moses couldn’t or wouldn’t answer him. It was awesome.)

When Moses didn’t answer him, I said, “This is Moses. He’s had a long morning and is obviously pretty cranky.”

The lifeguard laughed and said, “Give me 10 minutes and I’ll win him over.”

Well, it had already been at least 3 minutes, so I figured if this guy wanted to be rejected for another 7, that was his choice.

He gave it a good effort for a few more minutes and then said, “Okay. I’ll leave you alone now, Moses.”

As he started to walk away, I said, “Moses, do you want to tell him ‘bye’?” At that, Moses turned and gave the lifeguard a big wave and “Bye!”

A smile lit up the lifeguard’s face and he said, “Yes! I knew I could do it!” He came back over and asked for a high-five and a fist bump, both of which Moses gladly gave him.

Four days later, we were at sea on our way back to Vancouver. Josie had been waiting all week to go down the big waterslide on the ship, so she got her swimsuit on and went up the stairs to the top of the ship and where the waterslide started. There was a monitor on the deck where we could see when it was her turn so we could be ready to watch her as she came down the slide. Tyson and Moses missed her first run, but they were there for the second. When we saw that she was next, Tyson took Moses over to where he could watch her come down.

When she did, we all clapped and cheered for her. The lifeguard on duty turned and said, “Moses! Hey buddy! Do you want to do it?”

I’ll be honest, I had totally forgotten about the lifeguard and his encounter with Moses 4 days before. But he hadn’t. He even remembered his name.

Moses answered with a big nod of his head and a clear “Yes!”

Tyson and I looked at each other. Moses loves to slide. And he’s gone down some pretty big ones. But none as big and as long as this one and a waterslide at that.

I asked Moses, “You want to go down the waterslide?”

He again said, “Yes!”

Tyson looked at the lifeguard and asked, “Can he go down it? Is he old enough?”

The lifeguard said, “Sure he can go down it! It doesn’t matter the age. He just has to be 36″ tall, which he is, so he can do it.”

So I ran down to our room, grabbed Moses’ swimsuit, and made my way back up to the 9th deck as quickly as possible. Tyson got Moses changed into his swimsuit and then took him over to where the lifeguard was standing. He told him that he could walk up to the top with him or he could go with Josie, who was standing right there waiting. He said, “Either way, I’ll be right here when he comes down to help him if he needs it. He’ll be fine.”

With that, Josie took Moses’ hand and led the way up the stairs to the top of the slide. Tyson and I stood watching the monitor anxiously waiting to see the top of Moses’ head. A couple of minutes later, there he was, impatiently waiting his turn with Josie doing her best to keep him in line.

When it was finally his turn, he stepped over the lip of the slide entrance, sat down, and pushed himself forward. No hesitation. No fear.

When he came sliding down into view, he was backwards and on his belly. He hit the water at the end, sat up, and was met with cheers from my parents, my sister, Tyson, me, and the lifeguard. Just as he promised, the lifeguard was right there waiting for Moses. He clapped for Moses, gave him two big thumbs up, and high-fived him as he walked to the end. As Moses got out, the first thing he did was say, “Again!”

Sliding down to his own personal cheering section.
Hi-five from the most amazing lifeguard ever.

I lost count of how many times Moses went down the waterslide that afternoon.

If it hadn’t been for that lifeguard, I don’t know that Moses would have gone down that waterslide. It wouldn’t have been because he didn’t want to or because he couldn’t. It would’ve been because Tyson and I would have been too nervous to let him do it. That waterslide was really big and there wasn’t the option of one of us going down with him.

Some people may be thinking, “That’s the magic of Disney.”

I disagree.

This moment was brought to us by the magic of an individual practicing acceptance and inclusion. The magic of looking past stereotypes and focusing on abilities instead of limitations. The magic of seeing a person for who he is rather than his diagnosis.

There is no doubt in my mind that God made sure that our paths crossed with that lifeguard. He knew that some of us, including myself, needed the reminder that it’s not up to us to decide what Moses is or is not capable of. Moses can do that just fine on his own.

Us or Them

I wonder if other parents of kids with developmental disabilities ever feel the way I felt tonight. 

Moses’ IEP meeting is coming up to determine his placement going into kindergarten. I’ve already advocated for him to be able to go to summer school (or at least give it a try), and I’ve been laying the groundwork for him to be in the general education classroom as much as possible for months now. There’s so much evidence in support of the benefits of inclusion in education – academically and socially for both kids with and without disabilities – that I feel like there’s no reason for him to ever not be in the general education classroom. 

And yet I know that the biggest barrier that we will face in achieving that is the mindset that because children with disabilities don’t always learn at the same pace and/or in the same way, then they should learn in a separate setting. It’s touted as being what’s best for them, although I haven’t been able to find any research to support that claim. 

Anyone who knows Moses knows that he has the ability to light up a room. He has a beautiful, playful personality and is the most determined little boy I have ever met. His brain is a sponge soaking up all the things that are going to help him lead his best, most successful life. He has so many gifts that he brings to this world and it seems like he’s wanted. For the most part.

Until it comes to education. Then it’s like he’s already been weighed and measured and has been found wanting based on his medical diagnosis and evaluation results. 

Nevermind that he has been absolutely thriving in his general education early childhood classroom. But yet now that he’s going into kindergarten, it’s being doubted that he can continue to do that. 

I think the hardest part for me is when I feel like he’s being doubted by people who know him and/or are in education and are supposed to support inclusion rather than integration or segregation. It’s hard when I feel like I have to advocate for inclusion with people who know Moses and how amazing he is, and yet I still find myself having to explain the value of him being in the general education classroom 100% of the time. 

Why do I have to explain that he can and wants to learn? Why do I have to explain that he can and wants to have friends? Why do I have to explain that he can and wants to be part of the classroom community? 

Why do I have to explain that as soon as he’s not allowed to be a part of the community that is built in the classroom within the 7 hours that they’re there from the first day of school until the last day of school, everything will change for him. He will at that moment go from being “one of us” to “one of them”. 

Tonight as I was laughing with Moses and just soaking up the joy he can exude, I suddenly had the thought, “Why do I want to share him with others so badly, especially when it comes to school? Why not just keep him all to myself?”

Part of me wants to say, “Fine. I’ll keep him to myself. I’ll teach him and explore with him and laugh with him. I’ll be the one to challenge him and encourage him and watch him experience success. I’ll be the one to help him realize how much he’s truly capable of in this life.”

But the other part of me knows that that is my exhaustion, frustration, and hurt talking. Advocating for inclusion is hard work and I’m learning that you don’t get to take breaks. Keeping him to myself might be easier, but it wouldn’t be fair to him or the people who would be missing out on getting to know him and to learn from him. 

Because the real kicker in all of this is that Moses has more to teach all of us than we could ever hope to teach him.

Which then begs the bigger question: Who would benefit more from inclusive classrooms? Us or them?

Stay Out of the Way

While we were at the playground this evening, Moses went over to a fairly tall, steep climbing wall. As he put his foot on the first step, I thought to myself, “I don’t think he can climb this.” Instead of going over to help him, though, I just stayed back out of the way and kept my mouth shut.

He went to step up on the second step, and then stopped and got off the wall. He ran back towards the slide he had been going down, but instead of stopping, he ran past it.

He ran to a shorter, less steep climbing wall on a different structure. And climbed right up it. It took him a little extra effort to pull himself up and over the top, but he did it.

So tonight’s parenting lesson brought to me by Moses was to stay out of the way. My job as his mom is not to decide what he is or is not able to do. My job is to give him the opportunity to try and support him in his efforts. If he needs help, he’ll ask for it. More often than not, however, he doesn’t need my help.

How many times do we as parents get in the way of our kids showing us, and themselves, what they can do because we decide for them whether or not they can do something? Or decide that they need help because they’re not doing it quickly or easily enough, or because it’s not the “right” (i.e. our) way?

Our kids are capable of amazing things. And they’ll be happy to show us if we’ll just stay out of their way.

Changing the Body Image Narrative

“Mom, look how skinny I am.”

“Mom, look how thin I am.”

“Mom, these shorts are too big on me because I’m so thin.”

“Mom, her stomach is round and mine is flat.”

When my then 6-year-old daughter said these things, I mentally went into full-fledged panic mode.

On the inside, I was simultaneously screaming and crying at the thought that my young daughter was already falling to the emphasis our society and culture places on thinness while searching for the “right” way to respond to her comments.

I don’t remember when I learned that skinny was “good”. I think it’s a message that has been embedded in my culture for so long that it was just known. Kind of like how no one had to tell me that the sky was blue. I just knew. In grade school, I can remember looking at my best friend and seeing how skinny she was and feeling huge next to her. I can remember walking with a woman in my neighborhood when I was in 4th grade to try to lose weight so that I wouldn’t grow out of one of my favorite outfits. I can remember telling my mom that I didn’t want to go to Dairy Queen for ice cream because I didn’t want the extra calories when I was maybe 11 or 12.

Long story short, I battled through severe anorexia for about a year when I was a freshman in high school. The day that the scale showed I had gotten back under 100 pounds was exhilarating. The turning point for me was when I was standing with a young woman that was clearly bigger than me but she was the one getting compliments on how great she looked, I realized that the level of thinness I had achieved was not “pretty thin” and I did begin to eat more and gain some weight back. It was a very difficult, mentally painful process to see the numbers on the scale and the size of my clothes going back up. When I got to 110 pounds, it was my daily goal to keep it there. For the rest of my high school career, two things mattered the most to me: my grades and my weight. And I was only accepting A’s and 110 pounds, respectfully.

After high school, things got slightly better but not much. I still spent so much of my energy and focus on my weight, which I had allowed to go up to 120 pounds. It was part of my identity by then. I didn’t know how to live without my weight and size at the forefront of my thoughts. And it was completely normal. It was reinforced every day without me even having to look for it.

It wasn’t until I was pregnant with Josie that I ever went through an extended period of time where I honestly felt good about my body. Go figure it happened when I also hit my heaviest weight ever. However, that body positivity only lasted a short while because right after she was born, I felt that I needed to get back to my pre-pregnancy weight stat. And the well-intentioned comments about how I was losing the baby weight so quickly spurred me right along. The same thing happened when I was pregnant with Moses.

For so long, eating and exercising were not about health for me. It was all about trying to achieve that “perfect” body. The one that wasn’t too big or too small. The one that shape-hugging clothes looked good on. The one that elicited “positive” comments about how I looked. And all of this was encouraged by the world around me: commercials, magazines, movies, friends, etc. The message was clear: The size and shape of your body mattered. And the size and shape that mattered was small and thin. And I bought into that message hook-line-and-sinker for far too long.

In my experience, making critical statements about the size of our butt, belly, boobs, and thighs comes as naturally to women as breathing. There’s always at least 5 more pounds to lose. Food is both a friend and an enemy and the line that separates the two is thin (no pun intended). Exercise is about flat stomachs and thigh gaps and being swimsuit ready more than cardiovascular health and cholesterol levels.

I hate it. I hate the toll that it has taken on me for more than half my life, both physically and mentally. I hate the amount of time and energy I spent on making sure my weight fell at the low end of the “ideal” range for my height. I hate the tears I shed over not being able to fit into a smaller size of jeans or that I still didn’t have a perfectly flat stomach.

A couple of summers ago, I read an article featuring several women that had very positive body images. As I read the stories of these women who lovingly embraced their bodies, I had two different thoughts running through my mind. The first one was, “I wish I could have that kind of mindset about my body.” The second thought that closely followed the first was, “But do they really love their bodies the way they’re saying they do? Because I just don’t know how that’s possible.”

It struck me as very sad that I would question the genuineness of these women who, to me, were anomalies because they were able to not just look at themselves in the mirror but have themselves photographed showing more skin than clothing and be happy with their bodies. There was no mention of needing to lose weight, apologizing for or explaining where their “imperfections” came from, what foods they avoid eating, how many calories or points they’re allowed to consume each day. There was just love and appreciation for their bodies.

Even though I kinda thought they were lying, deep down I wanted to be like those women. I wanted to look in the mirror and not immediately examine my reflections for the flaws that were undoubtedly there. I wanted to be able to appreciate my body for being healthy and physically able to do pretty much anything I needed it to do. I wanted to be able to sit around with my girlfriends and not get caught up in nitpicking certain areas of my body that weren’t quite up-to-par or complaining that the delicious food I was enjoying would “go straight to my hips”.

How could I do that?

Also, how do I change the narrative for my daughter? How do I protect her against following the same storyline about body image I and countless women and men before me followed?

Because I am one of my children’s primary teachers, a lot of the change has to start with me. So in our house, my kids will never hear me criticize my body. My kids will never hear me speak the word “diet” to mean anything but the foods we put into our body. I make a very concerted effort to not refer to any foods as “good” or “bad”. I do point out which foods help our bodies to be strong and healthy and have the energy to do our work throughout the day. I have not and I will not ever celebrate or criticize the shape of either of my kids’ bodies. Food, weight, and body shape are not a focus in our house.

What I want to beg other people to do is to quit doing what I spent more than half of my life doing. Quit criticizing and shaming your body. Quit criticizing and shaming other people’s bodies. Our young kids are listening and watching and learning from all of us. My daughter hears you when you comment on how much weight someone has lost or how much weight you’re wanting to lose. She hears you talking about counting calories and macros and drinking the magic drink that’s going to help you go down two dress sizes. She sees you eating a salad and hears you talk about how it’s not what you really want to be eating but are doing it anyway for the sake of losing weight. She sees the judgmental, critical looks when someone who is overweight walks by, and she hears the comments that are spoken aloud. She notices that when you look at a picture of yourself you look at how your body looks before (or if) you notice how big your smile is and how happy you are to be where you’re at and who you’re with. And there will come a day when Moses will hear and understand all of these things, too.

Use your words and energy to build yourselves and others up by focusing on the attributes that truly matter and will make this world a better place.

On the mirror in my bathroom is a sticky note that says “My body is a temple of the Holy Spirit. I will honor God by caring for my body. I will give thanks to God for this body He has given me to do His work.”

Believe it or not, reading and repeating that every day, appreciating my body for what it is able to do, fueling my body with foods that I enjoy and help me to be strong and healthy, and cutting out all negative-talk about my body has resulted in a new narrative for myself. One that has helped me finally find myself with the best physical and mental health of my life. A storyline that I never thought was possible for me.

My hope is that this will be the narrative my daughter and my son will adopt for themselves.

My hope is that you will, too, if you haven’t already. Because together we can change the narrative around body image for the future.

When He’s Ready

Last week, I took my kids to their pediatrician for their yearly wellness checks. 

Josie went first and got a clean bill of health with instructions to eat more fruits and veggies. 

Moses went next and squirmed like the wiggle worm he is while the doctor checked his heart, ears, and throat. 

When the doctor had Moses lay down with his head on my lap so he could check whatever needed to be checked in his nether regions, Moses put up a little fight and about kicked the doctor in his own nether regions. 

When the doctor pulled Moses’ pants down and saw his diaper, he said something to the effect of “I see potty training isn’t going well.” 

I was a little taken aback and explained that we’ve gone through spurts of Moses being interested over the last year and have had off-and-on success with getting him to go on the potty, but overall, he’s not really into it yet. 

The doctor’s response?

“So he’s lazy.”

This time I was a lot taken aback and said nothing. 

But just because I didn’t say anything doesn’t mean I wasn’t thinking plenty of things, including that I wish Moses would’ve kicked a little harder a few seconds before. I almost asked, “Do you mean he’s lazy or I am?” Because let’s face it, Moses isn’t going to take potty training matters into his own hands. 

So what did I do?

I came home, felt guilty that my kid wasn’t potty trained yet because I had allowed him to be lazy, and began mentally preparing myself to have him potty trained by Christmas. 

Monday morning I got the pull-ups out and started making Moses sit on the toilet every 10 – 15 minutes. One time he peed. The other times he yelled and made it clear he did not appreciate being on the toilet. By the end of the day, he was happily in his diaper and I was feeling sane again.

Here’s the thing. I know my son. I know him much better than this man who sees him a handful of times a year. I know that him not being potty trained has more to do with him not being ready than either of us being lazy. Could I put him through potty training boot camp and force him to become potty trained? Probably. But again, I know my son and I know that this approach is not the best for him. (Or for me for that matter.) 

He’s just not ready. 

Would I love for Moses to be potty trained? 

Well, yeah. I’ve never met a parent who says, “Changing diapers is my favorite.” Especially when the child can contort and twist and put up a fight like none other. 

From what I’ve learned about potty training kids with Down syndrome, it’s pretty common for them to be closer to 5 or 6 before it really clicks for them for a variety of reasons: cognitive ability, bladder control, realizing the sensation of needing to go, etc. 

Some kids with Down syndrome are successfully potty trained by the time they’re 3 or 4. Which is fantastic for them! And another piece of evidence that God didn’t use a cookie cutter when making our kids. I’ve also read accounts of parents in which their child with Down syndrome was seemingly potty trained for a while and then suddenly reverted back to being in diapers. 

I know that other parents have different theories and ideas about potty training for kids with and without Down syndrome. And I hope that those work well for them. 

This experience has once again reminded me that while books and doctors may say what my child “should” being doing by certain ages, and that other people may have opinions about what he’s ready for, I know him best. He depends on me to do what’s best for him, not what’s best in the eyes of or for the convenience of others. I hope other parents remember that, too, whether their child has a disability or not. 

I know he’s going to knock potty training out the park. Just like he’s done for learning to drink out of a straw, crawl, walk, go up and down the stairs, use a spoon (and a fork when he feels like it), and a whole host of other things. Just like he will do with talking, reading, writing, riding a bike, and whatever else he sets out to accomplish.

It will happen.

When he’s ready.

Early Education in Down Syndrome

This week I got to Zoom with my 4th grade students during their Counseling time. It was so great to get to see their faces and hear their voices! We weren’t Zooming just so they could sing ‘Happy Birthday’ to me, though. We were Zooming so we could talk about Down syndrome.

October is Down Syndrome Awareness Month and it’s also the month my school district celebrates Disabilities Awareness Week. It’s one of my favorite weeks/months of the school year because I love getting to teach my kids that having a disability does not mean there is something wrong with a person. It means that there is something different with the way a person’s body or mind, or sometimes both, work. We learn about different types of disabilities while always keeping our focus on the fact that a person with a disability is a person that deserves to be treated with kindness and respect.

For each class I gave them a basic explanation of the chromosomes and the extra copy people with Down syndrome have, some of the differences that causes for their brain and body, and how much they are able to learn to do when given the chance. Then I asked if anyone had questions about Down syndrome.

The students in the class I Zoomed with on Tuesday morning were either still half asleep, bored to tears, and/or experts on Down syndrome already so none of them had questions.

By Tuesday afternoon, I was questioning whether or not it was worth doing the next two days. If the information I was sharing with them was appropriate and meaningful or just falling on deaf ears. If spending the time talking with them would even make a difference.

As I Zoomed with another class on Wednesday morning, I could tell the students were a little more engaged as I went over the same basic information. When I invited them to ask questions, hands quickly went up into the air.

“Is it similar to autism?”

“Can you catch Down syndrome from someone who has it?”

“Is it rare?”

“Can it be cured?”

It was awesome! I answered their questions the best I could and loved the effort they were giving in trying to understand Down syndrome.

Today’s session was good, too. One student asked if kids with Down syndrome behaved worse than other kids, and another asked if kids with Down syndrome could breathe okay.

It was yesterday’s session, though, that helped me to know that doing this wasn’t a waste of time.

Down syndrome isn’t rare. It’s the most common chromosomal condition that occurs in babies. About 1 in every 700 babies are born with Down syndrome. That number would be higher but unfortunately approximately 67% of women choose to terminate their pregnancy following a prenatal diagnosis.

There is no cure for Down syndrome. And as I told my students, I wouldn’t want there to be one. Because if Moses didn’t have that extra chromosome, he wouldn’t be Moses. Same goes for a lot of other awesome people with Down syndrome.

My hope is that one or more (or all) of those amazing young kids will grow up and make a difference in the life of someone with Down syndrome.

Maybe one of them will be a doctor who tells expectant mothers, “Your baby has Down syndrome. I know this news is unexpected and not necessarily what you wanted to hear, but I want you to know that there is no reason to believe that your child won’t lead a very fulfilling life.”

A nurse that says, “Congratulations! You baby is beautiful and perfect.”

A teacher who says, “Let’s see what works best for you so that you can learn as much as you can while you’re in my class.”

A policy maker that understands people with Down syndrome deserve fair access to things like life insurance and organ transplants.

An employer that welcomes people with Down syndrome to work at their business in a capacity that is appropriate for them. That provides the training and opportunity for them to be successful and contribute to the success of the business.

A friend who accepts a person with Down syndrome for who he or she is. Who isn’t nice because you’re supposed to be nice to people with disabilities but because she truly enjoys being around him.

A partner or spouse who resists the urge to bail upon hearing the diagnosis. Who chooses to stay and love and support the mother and child through all the ups and downs.

A mother who refuses to abort the life growing inside her. Who chooses to love her baby unconditionally regardless of the number of chromosomes it has. Who chooses to focus on all that her child will be able to do when the world wants to tell her all about what it won’t be able to do. 

In the world of Down syndrome, we are taught that early intervention is key for the successful development of our children.

I believe that early education is also essential for progress to continue to be made when it comes to the Down syndrome community. Talk to your kids. Teach them about Down syndrome and other disabilities so that when they find themselves around someone who has an extra chromosome, who might sound a little “funny” when he talks, who needs a little extra time to understand what she’s hearing, or whose brain or body works a little differently in other ways, they know what to do.

Be kind. 

Show respect. 

Choose love.

A Letter to Mrs. Cordelia

In honor of Down Syndrome Awareness Month, I want to share about one of my special role-models, Mrs. Cordelia Conn, through a letter I’ve written countless times to her in my head: 

Dear Mrs. Cordelia,

You had no idea, but you were one of the early pioneers and advocates for people with Down syndrome and a personal role model for me. And you did it simply by being the best mom you could be to Patrick.

When I was younger, I always admired you. You had a confidence about you that even a young girl like me could pick up on. You had the sense of humor that was essential in being a mother of seven. There was a genuineness and openness about you that just felt safe. You told it like it was without a cloud of anger or judgment hanging over your statements. 

What I remember most, though, was how you were with Patrick. How you acted like he was a normal human being that belonged anywhere he wanted to be and especially belonged wherever you were – church, parties, Boomland, etc. You didn’t try to hide that he had Down syndrome, and you didn’t emphasize it, either. You made it clear that Patrick was not a person to be pitied or coddled. You had expectations of him and didn’t make excuses for him when he did or said something you didn’t approve of. Most importantly, you treated him with respect and love, and I saw that. 

Neither one of us knew it yet, but God did. He knew that I needed a role-model to look to when I had my own son with Down syndrome. He knew that I needed more than to just know Patrick and see all that he was able to do. He knew I needed to know you. To see you as a mom to Patrick so I would know what kind of mom I would want to be to my own son. 

When I got to sit down and talk with you last September, you told me that you didn’t know that Patrick had Down syndrome until you took him to your family doctor for his first round of routine immunizations when he was two-months-old or older. 

After I picked my jaw up off the floor, I asked you if you thought the doctors and nurses knew he had Down syndrome when he was born, and you said, “Supposedly they did, but they thought maybe I couldn’t handle it. Who knows what their feelings were?” When I asked if he was healthy as a baby, you again just said, “Supposedly.” To say I was shocked to hear these things is a gross understatement because in the world of information overload we live in today, the chances of a baby being born with Down syndrome and it not being communicated to the mother is virtually unfathomable. To not know if he or she had any medical conditions that would need additional medical attention or care. 

But that’s what makes you so incredible. I honestly don’t think it mattered that you didn’t know right away that Patrick had Down syndrome. Because Down syndrome or not, he was your baby and you were going to love and provide for him the best you could. 

You may have only met Moses a handful of times, but your impact on him is much more than the sum of your brief meetings. Because of you, he had a mom that was ready to accept, respect, see, and love him for the person he is and will become. 

As we talked, you were amazed that Moses has been receiving therapies since he was 6-weeks old. That he was about to start preschool and would be going to school just like any other child. Those things were not available for Patrick, but yet you still made sure that he wasn’t just tucked away and dismissed. You gave him the opportunities to grow. To be seen. To be known. 

Along with a journal and some of Patrick’s old books, you gave me an angel to take home to Moses. You told me to put it up so that he couldn’t reach it and so that it could watch over him. I’m thankful to know that he has another even better angel looking over him now. 

Thank you, Mrs. Cordelia. With my whole heart I thank you for being the mom you were to Patrick so I could be the mom I am to Moses. 

Love, 

Jenny (a.k.a. Moses’ mom)

In loving memory of Mrs. Cordelia Ann Rock Conn (1928 – 2019)

Seeing Him

Over the last four years, I’ve heard or read about parents who say “I don’t even see my child’s Down syndrome anymore.” 

Me?

I’m still waiting.

I’ll be honest, in the last 3 years and 11 months, not a day has gone by that I don’t see something about Moses and think about him having Down syndrome. Sometimes it’s a facial expression. Sometimes it’s because I see him working to master a new skill or doing something I’ve never seen him do before. Sometimes it’s because of something totally random and I find myself thinking about Down syndrome and him.

There have been days that I’ve wondered, “What’s wrong with me?”. Why is it that these other parents can look at their child for an entire day and not once think about the fact that he or she has Down syndrome, yet somehow I can’t? 

Then last night it hit me that there’s absolutely nothing wrong with me. There is nothing wrong in me seeing my son for who he is. Seeing all of who he is. Including the extra chromosome that makes him so wonderfully and uniquely him. 

Yes, in so many ways, he really is like any other nearly 4-year-old kid. He makes messes, gets into his sister’s things, throws fits, says “Mom” on repeat throughout the day, and resists going to bed. 

I see that.

I also see his beautiful almond-shaped eyes that all but disappear when he laughs. I hear his muffled speech and celebrate when he says another word more clearly than he did yesterday. I see him work hard to open his yogurt by himself and cheer for himself when he succeeds. I see his smile that can get so big it takes up his entire face. 

Why wouldn’t I want to see those things? 

To say “I don’t see his Down syndrome.” is akin to saying, “I don’t see him.” 

As if having an extra chromosome is wrong. As if there is something wrong with him being fully and completely him. 

I’m no longer going to wonder when the day will come that I won’t see that he has Down syndrome. It’s a part of what makes him my Moses Alexander the Great, and he deserves to be seen.