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?

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.

Call It What It Is

A couple of weeks ago, I wrote about how I would love for people to stop using the term “special needs” when referring to Moses or other people with a disability. The next week, a couple of my friends at work asked me what I would rather people say if not “special needs”. 

Their question took me by surprise, but I was even more excited that after they read my post, they didn’t just dismiss my thoughts. It got them thinking and they were genuinely curious about what to say instead. (Yay!)

I realize that I left that last post unfinished because I did fail to offer an alternative for saying “special needs”. 

So what would I prefer you say when referring to Moses having Down syndrome or a disability? 

Exactly those words. 

‘Down syndrome’ and ‘disability’ are not bad words. They don’t mean bad things. They aren’t wrong to say in any way, shape, or form. So to not say them and try to sugarcoat what he has with something that sounds “nicer”, such as “special needs”, there is the implication that the other words are somehow bad or wrong. 

That a disability is a bad thing. 

That it’s bad to have Down syndrome.

That there’s something wrong with the person as a human being.

The implication may be subtle and seemingly harmless; however, the impact can be quite significant to those with Down syndrome or another disability. 

Do I think that my son is special? 

Absolutely. 

Moses is special because he is fearfully and wonderfully made exactly the way he’s supposed to be. (Just like you are.)  

HE is special, not his needs. 

I understand it might be hard to get out of the habit of saying “special needs”. It might seem like an inconvenience that isn’t really that big of a deal and not worth the effort. 

However, it is a big deal to those that fight against the stereotypes and challenges that come with being labeled “special needs”. It’s a big deal to the parents of children with disabilities that want nothing more than for their kids to be valued and accepted for exactly who they are. Please believe me that your effort is very much appreciated and does not go unnoticed.

So if it’s relevant to the conversation to include the fact that a person has a disability, then just say “disability” or the specific name for it, such as “Down syndrome”. You don’t have to whisper the words or look around to make sure no one outside of your intended audience heard them. I pinky-promise you that they are not bad or hurtful words in any way, shape, or form. 

Just call it what it is.

Show Mo Love

A couple of months ago, I was listening to an episode of Brené Brown’s podcast Unlocking Us titled “The Body is Not an Apology” . I was listening to it because it was about Sonya Renee Taylor’s concept of radical self-love, and I was hoping to find some more direction on how to keep improving my own body image (something I’ve been working on for decades). 

I was getting some good ideas and insight for myself, and then Brené and Sonya started talking about frozen chicken pot pies. And then the next thing I knew is that I was listening to Sonya explain to Brené, “I don’t want to be accepted. I want to be loved.”

At that moment, all I could think about was Moses. 

I don’t want Moses to be accepted. I want him to be loved. 

I don’t want Down syndrome to be accepted. I want it to be loved.

Don’t get me wrong…Moses is so loved by the people who know him. He radiates a certain combination of joy and mischievous and genuineness that is hard for people not to be drawn to and love. 

I feel like the challenge going forward is for this love to continue to grow and for it to spread so that as he gets older, he’s not just loved but also included in a way that isn’t out of obligation or pity.

So how is this type of love for Down syndrome going to be achieved? 

I feel like that’s where another thing that Sonya Renee Taylor talked about later on in the podcast comes in. She said that one of the steps in achieving radical self-love is to make peace with difference. When I heard that, I remember thinking, “Yes. Moses is different because he has Down syndrome. And that is not a bad thing.” 

However, in our society, difference is so often seen and labeled as bad. 

How else can it be explained that in the United States, an estimated 67% of babies with Down syndrome are aborted each year. Sadly, that number is even higher in other parts of the world. There are countless accounts of parents being encouraged by their doctors to terminate a pregnancy simply because early genetic testing indicates the baby has the presence of an extra chromosome.

Why? Because that difference in the chromosomal makeup of that little human being is bad. The differences it may cause medically, physically, cognitively are bad. 

That’s the message that is being sent the moment genetic testing indicates that a baby has Down syndrome and the doctor suggests abortion and hopefully the next baby will be “normal”. 

That’s the message that’s being conveyed when a person responds with “I’m sorry” to a pregnant mother who has just shared that the baby she’s carrying has (or likely has) Down syndrome. 

That’s the message that is being passed on when a mother encourages her own daughter who is in her 30s to not have another baby because it may have Down syndrome. 

Yes, a child born with any of the three types of Down syndrome will have differences about him or her, there is no doubt about that. 

But when I was pregnant with Moses, even before I knew he had Down syndrome, I knew that the baby I was carrying was going to be different from Josie. I knew that because every baby is different. Every child develops differently. Every child will grow at his or her own pace regardless of the timeline its parents set before it. Every child will grow to have different strengths and challenges. 

For example, Moses is hands down a stronger problem solver than Josie was at his age or ever in her life. When something is hard for her, her first inclination is to quit or get someone to do it for her. Moses, on the other hand, will patiently keep working to achieve whatever it is that he’s set his mind to at the moment. Does that make him good and her bad? Of course not. Their brains are wired differently in this regard and that’s okay. I’m at peace with that. 

What I believe needs to happen is for the rest of the world to be at peace with the fact that people with Down syndrome are different in some ways and just stop there. No assigning “good” or “bad” to those differences. Just be at peace that the differences that come with that extra copy of the 21st chromosome are just part of who they are. 

I want his general education Kindergarten teacher next year to love having him in the classroom. I want him or her to see the value of having him as part of that class regardless of if he’s able to learn the academic content at the same rate as most of his peers. I want him to be sitting in the middle of his classmates at lunch in the cafeteria and them including him in their interactions even if he might not be able to talk as clearly as they can. I want him to be invited to birthday parties and playdates because his presence is desired and appreciated by the other kids. 

And then in 25 years, I want for one of the women who was once a little girl in Moses’ kindergarten class to become an OB-GYN. And when she delivers the news to an expectant mother that genetic testing indicates her baby has Down syndrome, I want her to do so with a smile and reassurance that the baby is going to be amazing and wonderful, and that she will ensure that both the mother and baby get all of the best medical care and attention they need. 

I want for one of the men from Moses’ kindergarten class to hold his newborn baby that the doctor says has markers consistent with Down syndrome and be at peace knowing that his kid is going to be amazing and wonderful when the chromosomal test results confirm there is an extra copy of the 21st chromosome. 

I want for one of the kids from Moses’s kindergarten class to become a teacher and when a student walks in with those beautiful physical features of a child with Down syndrome, an automatic and genuine smile appears because that teacher knows this is going to be an amazing year in that classroom. 

I want for one of those kids from Moses’ kindergarten class to one day have a child in kindergarten who comes home and says, “There’s a student in my class who has Down syndrome.” And that parent will smile and be excited that their child is going to have the amazing experience of getting to know, learn with, and learn from a child that brings a little something extra to the classroom.

I want the world to be at peace with the differences that Down syndrome brings because it is in those differences that so much beauty and joy and most importantly, love, is found. 

This is the kind of radical love I want the world to have for Moses and all those with Down syndrome.

“‘Acceptance’ is an innate word. It is an inert word, it does not do anything, it stops there…it just lays there. I accept that. There’s nothing, literally. There’s nothing… It is a passive term. “Love” is an active term, it is a thing that makes you get up and do something, to change something, to shift. It creates its own momentum. I want for the world a love that changes shit, that’s what I want. I want us to love in a way that disrupts…Acceptance won’t get us there.”

-Sonya Renee Taylor

That Boy

Tonight at Josie’s soccer games, Moses decided he wanted to join a group of kids playing behind where we were sitting. Usually when we’re at her games, he wants to either play on the playground or watch Masha and the Bear or Peppa Pig on my phone.

This evening, however, he went over to where some kids were kicking some soccer balls around and tried to play with them. When they moved over to the empty soccer field next to where Josie was playing, he went with them. I stood in the middle so I could keep an eye on him and keep cheering her on.

When I took the picture of Moses in the middle of this group of kids, it was because I wanted to capture the moment of him just being a little boy playing with other kids. It was a beautiful scene to watch and I had a beautiful feeling in my heart from getting to watch my son running around like this, smiling and laughing with these other kids.

Moses, in the gray jacket, trying to play with the other kids.

For a lot of parents of kids with a disability, there is often a feeling of apprehension in situations like these. Are the other kids going to see my son as just another little boy wanting to play and include him? Or are they going to figure out that he’s ever so different and it’s enough to cause them to move away from him or even tell him he can’t play?

For a moment it seemed like he was being accepted and included.

And then the moment ended.

Just a moment or two after I took the picture, I started to realize that a couple of the older girls were getting annoyed with Moses. That really didn’t bother me because he was getting in their way in his attempt to play with them.

It was when he started trying to play with one of the little boys that looked to be around 1 1/2 – 2 years old that it was apparent that the moment was over and Moses’ presence was no longer going to be tolerated.

Here’s the thing – Moses loves babies and little kids. He does his best to be gentle, but he does still tend to cross some boundary lines when he wants to hug them and just love them. He has gotten so much better, but I don’t know that he’ll ever be able to resist the urge to at least give them a little pat.

It appeared that the little boy Moses was trying to play with was related to one of the older girls, and she felt like Moses was a threat to him. She came over to try to shield him from Moses. And Moses being Moses, he just tried to do a group hug.

I totally get being protective of a younger sibling or cousin or friend.

It was the way I heard her call Moses “that boy” to her friend that crushed my heart.

Again, I’ll admit that Moses crossed the personal boundary line when he got as physically close to the other little boy as possible with as much gentleness as he could muster.

The tone she used when she said “that boy” indicated he was bad.

Different.

Unwelcome.

As I walked over to remind Moses to be gentle, I also had it in my mind to try to introduce him to the other kids and be more actively present while they played.

But when I heard the way he was called “that boy” in that way, I choked back my tears, reminded him to be gentle, and then asked him if he wanted to go get his Kindle out of the van. He immediately said “Yes!” and began to walk with me away from the kids, completely unaware of what just happened.

This is one of the heartbreaking realities of having a child that is different.

Josie’s first game ended, and we moved to a different field for the next game. He sat in his chair for a little bit playing on his Kindle, and then he got up and wanted to run around.

As we were walking around the field, we saw a girl that I know but Moses had never met, and she had never really met Moses.

For the next forty minutes, she played with him. They played Ring Around the Rosy at least 1,000 times. He chased after her and she chased after him. They kicked a soccer ball around and then sat down to roll it back and forth. At one point, they were sitting on the ground pretending to be butterflies.

Rolling the soccer ball after taking a break from Ring Around the Rosy.

As I joined them for a few rounds of Ring Around the Rosy, I felt tears again when I looked at not only the huge smile on his face but also the genuine smile the girl gave him as she looked at him.

Yes, there are going to be those situations where the other kids are going to decide Moses is just too different, too “that boy”  for their liking.

There are also going to be those situations where the other kids see that boy, my boy, accept him for who he is, and include him in their play.

I am so thankful that on the same night that I had one of my greatest hopes for Moses crushed by one of my greatest fears for him, I had my hope restored by this girl who showed me that there really is reason for me to hope that Moses will find acceptance and inclusion in this world.

God’s Delight

Last Christmas, I was looking on Amazon for a couple of books for Josie and Moses when I came across one title “When God Made You” by Matthew Paul Turner. On the cover is a beautiful little girl who looks like she’s in the middle of a free fall. Her arms are spread wide, her eyes are closed, and she has a hint of a smile on her face. She looks like a little girls who is confident that she is safe and loved.

More than anything I want Josie to grow up knowing that she is so loved and that her dad and I do everything we can to keep her safe. (One of us would actually wrap her in bubble wrap and make her wear a helmet every day if he could.) Since Moses was born, I am very aware of the extra attention he sometimes requires, especially when it comes to his health and safety. Because I know Josie hears a lot of the conversations that center around him, I make an intentional effort to make sure she knows we care just as much about her being healthy and safe. When I saw this book, I thought it would be a great way to remind her not only of that but also what a beautiful child of God she is.

When we read this book for the first time, I wasn’t prepared to get choked up reading it. At least not for the reason I did.

The book starts out with exactly the kind of message I wanted Josie to hear:

You, you, when God made YOU, God made you all shiny and new.

An incredible you, a you all your own, a you unlike anyone else ever known.

The book continues to explain how perfectly and beautifully God created this little girl (and my little girl) to be exactly the way He wanted her to be.

And then a few more pages into the book, I read the words:

“You, you, when God sees you, God delights in what is and sees only what’s true.

That you – yes YOU – in all of your glory, bring color and rhythm and rhyme to God’s story.”

That’s when I felt a lump in my throat and tears in my eyes. Not because those words are true for Josie and Moses and every child God creates, which they absolutely are.

It was because those words are true for me, too.

Even though I’m a 40-year-old mother of two who feels tired, frustrated, and downright cranky more often than not, God sees ME.

And not only does he SEE me, He DELIGHTS in me!

I don’t know where along the road of life that I forgot that no matter how old I am or how cranky I may get sometimes, God knows the true me and loves me. And not only that, He delights in me!

There’s something about knowing that I can delight God simply by being the me He intended me to be – the same way my children delight me every day just by being themselves – that makes me feel lighter. That puts a smile on my face and warmth in my heart.

I have found that I do have to remind myself that the me He delights in is the me that He created me to be:

“…a giver who lives with all heart, soul, and mind.

A dreamer who dreams in big and small themes, one who keeps dreaming in journeys upstream.

A confident you, strong and brave, too.”

There’s something about being reminded of God’s delight, in addition to His love, that makes me want to be the best me I can be every single day. It helps me when I start to experience those all too familiar thoughts of self-doubt:

“Am I doing enough?”

“Am I too emotional?”

“Am I talking too much?”

“Is my laugh too loud?”

“Do people really like being around me?”

“Should I have kept those thoughts to myself?”

Knowing God made me with the exact personality traits He knew I would need to do His work, and that he finds it delightful when I am using them to do His work, gives me the strength and courage to push those thoughts away and keep going.

It seems like for some of us, as we get older (and possibly crankier), when we hear things like “children of God”, we think only of the chronologically young people. It does us so much good, though, to remember that no matter how old (or cranky) we get, we are always included in that phrase.

“‘Cause when God made you, somehow God knew, that the world needed someone exactly like you.”

Refusing to Stay Silent

This morning while at the doctor’s office for my yearly checkup, I was enjoying the conversation of my nurse and we got to laughing about different things, and then somehow the conversation took a turn for the worse and somehow led to her saying something along the lines of “People get offended by anything these days.” 

In my mind, I was disappointed that the conversation took that turn because I don’t believe it has anything to do with “these days”. I believe that people are actually getting offended by the same thing that has been offending people for decades, if even centuries. The difference is that now people are not willing to let the offensive words, pictures, or remarks slide. People are not willing to be silenced by the accusation or fear of being accused that they are “too sensitive”. People are not willing to continue to be offended by others simply because they personally do not see the offense.  

But what really had my mind spinning was after she said something about a current topic people are finding offense with. She followed her commentary up with, “It’s so retarded.” 

My first thought was, “No, she didn’t.”

But she did. And as I sat there half-listening as she continued to talk, my mind was racing trying to decide if and how I should address her use of the r-word:

“She just said that people these days are too easily offended, and did I want to be one of those people, did I?”

“Should I even still bother saying something? She’s talking about something else now.” 

“WHY DIDN’T YOU JUST SAY SOMETHING???” 

“I have to say something, but at this point, how?” 

“I don’t want to upset her or make her uncomfortable, but her words upset me and I’m uncomfortable that she used them. Is her comfort more of a priority of my own? Of my son’s and others with developmental and intellectual disabilities? Of their parents?” 

“She’s been so nice. Do I really want to call her out on this?”

When she moved to take my blood pressure and there was a brief pause, I said to her as calmly and respectfully as possible, “You know when you said something about people being offended so easily? Well, then you used the word ‘retarded’ and that actually does offend me because my son has Down syndrome.”

As was illustrated for me today, I know that there are people who continue to use the word retarded despite knowing it’s offensive. Much like the n-word. I would say that perhaps they continue to freely speak it because they haven’t heard that it’s offensive and believe it’s still an appropriate adjective to use in describing something, but I just have a really hard time believing that. (Unless they’re like 100-years-old, then maybe. Otherwise, no.)

I also know that there are a lot of people who recognize and agree that using the word ‘retarded’ is offensive and shouldn’t be used. These are the people who have likely erased it from their vocabulary. I would also venture to guess that a lot of these people cringe when they hear someone else say it and do exactly what I’ve done so many times in the past:

Nothing. Keep your mouth shut. Silently congratulate yourself for not using that word.

I get it. Addressing the use of an offensive slur can be hard and uncomfortable no matter if it’s a loved one or a stranger. There’s a chance that you could find yourself on the receiving end of some more offensive language when you’ve done nothing to deserve it. There’s a chance that you could be ridiculed or even ostracized. There’s a chance you could jeopardize a relationship.

However, not addressing it is giving your silent approval. Yes, in some cases, silence can speak volumes in letting someone know you have been wronged. However, in a situation like this, silence is the equivalent of saying,”Hey, you used the r-word and I find that really offensive, and a lot of other people do, too, but it’s okay if you want to keep saying it.” 

Silence is complicity.

– Albert Einstein

I have to admit that one of the reasons I was able to speak up today is because I’ve been mentally preparing myself since the last time I didn’t speak up. I’ve literally been practicing different ways to respond in my head for a couple of years now because I refuse to stay silent about it ever again.

How can you prepare yourself for speaking up and calling someone in when they have said or done something offensive?

  • Commit to speaking up the very next time it happens.
  • Practice some things you could say: “Don’t you think it’s time to find a new word?”; “You know, that’s a really offensive word to a lot of people and I don’t think you’re wanting to offend anyone, right?”; “Using that word makes you sound really insensitive/uneducated.”
  • Show a picture of Moses or another person with Down syndrome or intellectual disability and ask, “Would you say that to this person’s face? If not, you might want to consider saying it at all.”
  • Have an exit plan. Be ready to say that you’re not comfortable being in a conversation with someone that uses that word and excuse yourself from the conversation.

In the end, you have to just rip the bandaid off and say or do something. A wise person recently reminded me that how the person or people respond to you standing up for an issue is not your concern. You have no control over whether or not she will listen respectfully or fly off the handle. And whatever her response is really isn’t about you, anyway. It’s about her. Her values, her respect of others, her willingness to listen to understand, or a lack thereof. 

I have to give the woman today props for her response today. Did she apologize? No, she didn’t. She also didn’t shut down or get defensive. She was a quiet for a moment while she finished taking my blood pressure, and then our conversation resumed. She even asked me if I knew Moses had Down syndrome before he was born, and I was more than happy to answer her question.

As I left there today, I like to think that she’s going to reflect on our conversation today and reconsider her use of the r-word. She might, and she might not. What I know for certain is that I left there today having advocated for my son and others who are not always able to speak up for themselves. And I have to say, refusing to keep my mouth shut feels really, really right.