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.

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.

Stop Saying “Special Needs”

“Special needs”

Hearing that phrase is like hearing nails drag across a chalkboard. (Does anyone even remember what a chalkboard is and that torturous sound?)

As Moses gets older, I understand more and more why individuals with disabilities and parents/caregivers of individuals with disabilities do not want that phrase to be used to describe them. 

I saw this video a couple of years ago at an event for moms of kids with Down syndrome:

At that point in my journey, I remember thinking something along the lines of, “Huh. I never thought about it like that.” And then I didn’t give it a lot more thought. 

Now that we’re starting to have conversations about Moses going into Kindergarten and are faced with the reality that the amount of time he gets to spend in the general education classroom is going to potentially be impacted by his “special needs”, I’m definitely giving it more thought.  

“Special needs” implies that his needs are so vastly different or complicated that they justify excluding him from the mainstream environment under the guise of “supporting” or “accommodating” him. 

What are his “special needs”?

Well, he’ll need to go to a speech therapist. Which other kids in his class will likely also need to do. 

He’ll likely need more redirection to stay on task during lessons and assignments. Which other kids in his class will also need. 

He’ll probably need help opening his milk carton at lunch. Which probably about half of the other kids in his class will need help with, too. 

He’ll need help tying his shoes if they come untied. Which, you guessed it! Most of the other kids in his class will need help with that, too. 

He’ll need love and patience and understanding from his teacher. Wait. So will every single one of his classmates. 

He’ll need opportunities to learn and practice social skills that will help him develop positive relationships with his peers. 

The majority of what Moses will need to be successful in the classroom are no different than most, if not all, of the other kids that will be in Kindergarten with him. Will he likely need some additional supports? Yes. But not to the extent that he’s out of the general education classroom more than he’s in it.

Some of you may be thinking to yourself, “But really what’s the big deal of saying ‘special needs’? It’s not offensive, right?”

No, it’s not necessarily offensive like the r-word is.

But it is a problem because it puts limitations on what individuals with disabilities have access to. It’s a problem because it implies that kids, or even adults, with a disability – say, Down syndrome – have needs that are so different or complicated that they should be kept separated from those with “normal” needs. 

The use of the term “special needs” tricks parents, teachers, administrators, and society into thinking that because of having a different level of ability and having to do some things differently or with support, it means that those kids aren’t able to be in the same classrooms as typically developing students. That they need to sit at a different table. That the bar for achievement should be set lower, if it’s even set at all. 

Moses doesn’t have special needs. 

He has the same human needs as every other human being on this planet. 

Again, yes, there are some areas, such as speech, that he needs extra support. Yes, there are some things that will take him longer to learn than others. 

However, none of those things are grounds for him to ever not have a seat in the classroom or at the table. He has so much to contribute to this world that I’ll be damned if I’m going to let the misconception that he has “special needs” ever be grounds for him being denied access to the spaces he has the right to occupy. 

When we stop using the phrase “special needs”, we are less likely to see people with disabilities as almost fundamentally different as human beings in some way. We will be less likely to use it as an excuse to exclude people with disabilities from spaces they have the right to occupy. We will stop faulting those with disabilities for not being “normal”. 

Perhaps those of us who are “normal” could do a better job of remembering that we have the ability and responsibility to respect that literally everyone is different in their own way and deserves to have their human needs met without question. Perhaps when we do that, the needs of those individuals with disabilities won’t seem that different at all. 

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.

Stop Comparing, Start Working

In the past several weeks, I’ve had several conversations with people who are going through a hard time, and each of them has said, “I know this is nothing compared to what others are going through.” Or even, “I shouldn’t even be saying this to you because you have it even harder.”

I think most of us can say that we’ve been there, said that. We’ve tried to silver-line our situation by comparing our situation to one that seems harder. One of the last times I remember saying something along those lines was to my counselor. And she immediately said, “You’re not going to feed me that line, are you?”

Life is full of struggles. No one is exempt. Some are small, some are huge. Some come and go relatively quickly, and some might actually last a lifetime. There is no avoiding hard life experiences from time to time. And when they arise and we want nothing more than to make them disappear, the very last thing that’s going to make that happen is playing the comparison game. You comparing your struggles to mine or me comparing mine to yours at best provides temporary “relief”, but in the end is essentially as effective as trying to put toothpaste back in the tube once you’ve squeezed it all out.

You are not me, and I am not you. You do not have my past experiences, mindset, or perspectives nor do I have yours. What is a struggle to you may not be as much of a struggle to me. What’s a struggle to me might not even register as a hiccup in your day.

No testing has overtaken you that is not common to everyone. God is faithful, and He will not let you be tested beyond your strength, but with the testing He will also provide the way out so that you may be able to endure it.

(1 Corinthians 10:13)

We may all struggle in common areas of our life, such as relationships, work, and even faith, yet our struggles are unique to each of us because we are simply unique beings. You and I may be in the exact same difficult situation and perceive it much differently. As individuals, we are bound to perceive and process experiences differently for so many different reasons.

Take, for example, receiving constructive criticism at work. If we both work for the same organization in the same position, let’s say sales, and we are both told that our work performance has subpar and are given suggestions on how to improve, there is a really good chance and you and I will not have the same response. You will be able to listen openly to the feedback and be genuinely grateful for the suggestions. That’s because you have a beautiful growth mindset that helps you view mistakes as opportunities to learn and the confidence to know that, despite this current critique, you are still good at what you do and are going to just keep getting better. I, on the other hand, will be so devastated that I will barely be able listen to the words being spoken about me. That’s because my fixed mindset has taught me that mistakes mean I’m clearly not smart or good enough to do this job. I’m also a perfectionist and my main goals in life are to 1) never fail; and 2) never let anyone down. The constructive criticism has let me know that I am both failing and letting my boss down. I will likely give my two weeks notice tomorrow.

When you’re faced with a challenge, whether it be a poor work performance review, trouble within a relationship, the loss of a loved one, whatever it may be, comparing it to another’s situation isn’t going to help you. Even if you decide that his situation is worse or her challenge is greater than yours, it’s not like yours is going to magically stop being hard. That everything is going to *POOF!* be all better.

Since my counselor put me in my place, I have learned to stop comparing the tests that I experience in life to those of others.

For example, my son has Down syndrome. Yes, he can not only eat food, he also feeds himself. Yes, he can walk and run. Yes, he can do so many things that other kids with Down syndrome or other disabilities can’t. Yes, he brings an insane amount of joy and light to my life. Yes, there are still times when being his mom is hard. Yes, there are still things that he can’t do yet that I wish he could because it would make my life easier.

Comparing all this to someone else whose child has more or seemingly more difficult limitations doesn’t make the hard stuff go away. It also doesn’t help me to mentally or emotionally feel better.

Over time, I’ve learned to say, “This is hard for me right now.” For me – for my brain, for my emotions – this is hard.

There are no comparisons. No feelings of guilt. No excuses for why it gets to be hard for me.

Just acceptance that it’s hard. For me. Period.

I’ve learned to pray about what’s hard. Sometimes I even ask “Why, God? Why me? Why my family?” I ask for guidance and strength and patience and whatever else I need to get me through whatever situation I’m facing at the time. And then I trust that God knows my heart and He knows my mind. He knows my strengths and He knows my weaknesses. And He knows “why”. Which is why I know that He’ll give me who and/or what I need to be in the challenge or get through it.

I’ve learned to ask for help from others.

I’ve learned to say, “No.”

I’ve learned to accept that I am not in control.

I’ve learned to rest – physically, mentally, and emotionally.

I’ve learned to call my counselor when I need an unbiased ear to listen.

I’ve learned that my way is not the best nor the only way.

I’ve learned to keep my heart and my mind open to possibilities that I haven’t even thought of yet.

This is what has worked for me. Maybe some of it will work for you. Maybe it won’t. Because you are not me, and I am not you.

In the end, however, comparing ourselves and our troubles will not work for either of us. Let’s stop comparing and start working to figure out what will actually help us and do that instead.

Morals, Not Politics

“But we have retards…I’m sorry, I know that’s an offensive word, and I’m not trying to talk down on people with Down syndrome, but that’s what these people are. These people are so stupid and ignorant they cannot put something common sense in place…”

Marjorie Taylor Greene, United States House of Representatives (GA)

This comment was made in a video by this person a few months ago. I first learned of it a few days ago. After I watched and listened to it a couple of times, I decided I wasn’t going to say anything because I don’t like getting into politics. I don’t even know this woman and she doesn’t represent me or my state so why bother, right?

But the more I’ve thought about it, I know I have to say something.

For me, it has nothing to do about politics and it has everything to do with morals. It has nothing to do with being a Republican or a Democrat and it has everything to do with the standard of what is and is not acceptable in our present-day society.

First of all, I don’t care who you are and I don’t care what you are talking about. If you know a word is offensive and you choose to say it anyway, saying ‘I’m sorry’ doesn’t remove the insult from the word you said. For example, if I said to you, “No offense, but you’re really ugly.” Does the first part cancel out the second? No, it doesn’t. The words ‘retard’ and ‘retarded’ used in relation to describing a person or group of people have been recognized as extremely offensive for well over 10 years. I’m pretty sure that’s an ample amount of time for anyone born before 2009 to remove it from their vocabulary when referring to a person or group of people. Let me be clear: Saying “no offense” before or after the word ‘retard’ or ‘retards’ does not make it inoffensive. Ever. Pointing to a group of people who are still fighting to have their worth as human beings recognized to illustrate who you think of when you say the word ‘retards’ only serves to compound the offense.

Secondly, did you notice that she went on to identify a group of people that comes to her mind when referring to ‘retards’? Who she compared those who are “so stupid and ignorant they cannot put something common sense in place…”? Yep, people with Down syndrome. Someone like my son. Someone like my Goddaughter. People like our friends that have Down syndrome.

Moses Moyers, a 4-year-old with Down syndrome as well as common sense.

Here’s where I’m going to bring in politics. I am so tired of hearing people say things like, “Well, he said that because he’s a Republican/Democrat.” A political party doesn’t speak, people speak. A political party has ideals and views, but people choose what words come out of their mouths. This person didn’t say what she said because she represents a certain political party. She said it because she is a human being who thinks it’s okay to demean one group of people by referring to another group of people to serve as an example of her offensive slur.

What bothers me the most, though, is that there are going to be some people who know me and claim to care about my son yet will stay quiet about this elected official using the word ‘retards’ as well as calling out people with Down syndrome to give illustration to the word. They will stay quiet because they identify with the same political party that she is a part of or because they agree with the issue she was trying to make a point about. I honestly don’t care if they are a member of her party or if they agree with her stance on the issue she was talking about. I don’t care. What I care about is excusing and/or agreeing with her use of words and her belief about people with Down syndrome.

During the past few months, I have witnessed an alarming number of people who excuse or even support immoral and unethical behavior in the name of a political party. It frightens me that people would allow a political party affiliation to come before God’s commandment to love thy neighbor as thyself. On both sides of the political spectrum I have seen and heard so much hate and disrespect which is somehow deemed acceptable in the name of party loyalty. It’s as though somehow political parties have come to set the moral standards for their members instead of vice versa. I personally choose to stay out of political discussions because of their negative nature, even among people who identify with the same party. However, when that hate and disrespect extends to people who didn’t ask to be involved in the narrative, I am going to speak up.

I’m not asking for anyone to jump party lines to denounce the words of this person. What I am asking is that you understand that on a moral level what she said was so incredibly wrong and offensive to so many people. Some of which I’m going to guess she’s claiming to care about or represent. But without words and actions to back that up, then her claim is only that. You can be a member of a political party and not support some of the people and practices associated with it. (Trust me, I know this from experience.)

Last night I prayed for the person who said these words. I also prayed that others would not see her as an example to follow. I prayed for the words to address this issue in a way that was respectful yet firm in repeating myself and countless others in saying that using the words ‘retard’ and/or ‘retarded’ to describe a person is offensive and inexcusable. I pray that you and your sense of morals will not support that.

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.

Words Matter

suffer (verb – used with object): to undergo, be subjected to, or endure (pain, distress, injury, loss, or anything unpleasant)

Dictionary.com

This afternoon I was somewhat paying attention to the Philadelphia Eagles v Green Bay Packers game that was playing on the TV while I was in the kitchen. When the sportscasters began talking about the different cleats players were wearing to raise money and awareness for different causes, I paid a little closer attention. When the reporter for the game focused on the cleats worn by Alex Singleton of the Eagles, I thought it was pretty cool that they were for the Special Olympics. The reporter went on to explain why he chose to support that organization:

Because his older sister “suffers from Down syndrome.”

The advocate alarms instantly went off in my brain.

I immediately went to work looking up who was announcing that game, and I learned the reporter’s name.

Next, I Googled the reporter’s name and found the links for her social media accounts.

I’ll be honest in that as I was doing my research, my first impulse was to blast her on her social media accounts and mine. I was even going to sign up on Twitter for the occasion.

However, by the time Google had given me the information I was looking for, I had calmed down (a little) and had decided that I wouldn’t blast her on her social media accounts. Instead, I would just send her a message on Facebook and hope that she saw it and took it to heart.

Hi Ms. Wolfson,

I was watching the Green Bay v Philadelphia game, and I heard you commenting on Alex Singleton wearing Special Olympic cleats today in honor of his sister, Ashley. You said that she “suffers from Down syndrome”. As a parent of a child with Down syndrome, I am going to encourage you to refrain from using that phrase ever again. My guess is that Ashley, like my son Moses, does not suffer at all from having an extra chromosome. She is a person with Down syndrome, living with Down syndrome, and from the sounds of it, thriving with Down syndrome. There is no suffering about it. My guess is that you meant no harm or offense by your choice of words, but please take into consideration that your choice of words impacts how others may view Down syndrome. Seeing as how 67% of parents choose to abort a baby upon learning it has Down syndrome, we have to work intentionally to highlight the beauty and value people with Down syndrome bring to our society. 💙💛

Respectfully yours,

Jenny Moyers

I also sent her a picture of Moses and me from a recent trip to the zoo in which we were both smiling and clearly not suffering.

Riding the train at the St. Louis Zoo

There is no pain, distress, injury, loss, or anything unpleasant being endured here simply because Moses has an extra chromosome.

The only time I would say any of us have come close to suffering as a result of Moses having Down syndrome was when we feared we were going to lose him as a baby to RSV.

I don’t expect to get a reply from Ms. Wolfson. I don’t expect her to publicly acknowledge her error in speaking about a person with Down syndrome.

What I do hope is that she never says it again.

I hope she understands how much words matter.

In some cases, they can literally mean the difference between life and death.