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. 

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.

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.

Three Hundred Eighteen Days

Almost a year ago, three hundred eighteen days to be exact, I shared about reaching my breaking point. Physically, mentally, and emotionally I was exhausted. I was burned out from investing too much time and energy into people and things outside of myself and not consistently investing enough quality time and energy in myself.

I didn’t get to that place overnight, and I knew that getting back to a place of health – physically, mentally, and emotionally – would take time. Sure, I could have gone to my doctor and asked for an increase in my antidepressant medication, and I’m sure that would’ve “helped”. However, deep down I knew that what I was experiencing wasn’t depression (although it was definitely part of it), and putting the band-aid of more medication wasn’t going to get down to the root of the issues I was experiencing.

There was no magic formula I followed to improve my overall health. I didn’t follow a particular program or introduce anything radically new into my life (other than planning to take a leave of absence from work which got the Covid-wrench thrown into it). Instead I found that what I needed was already in my life…I just needed to utilize my time, energy, and resources differently.

First off, I prayed. A lot. I’m not just talking saying a few extra Our Fathers. There were a lot of big conversations between God and me happening. Some of them were a lot of me asking “Why?” about a multitude of different things; others were of the begging nature in which I pleaded with him to just make it all go away and show me the fast, easy road back to “normal”; then there were the ones in which I surrendered to Him and just asked Him to hold me because I couldn’t hold myself up any longer. 

The weekend before I was supposed to begin my leave of absence, I was invited by a couple of friends to join them in a 40-day yoga and personal growth challenge. Through that, I did find that doing yoga daily helped me improve my physical health. I don’t know if you’ve ever done yoga, but some of those poses are hard. And then you have to hold them for forever. Even though I wanted to give up pretty much every day in the beginning, I stuck with it and found myself getting stronger and not hating all the hard poses so much. I also found that my mental health was improving from both the nature of yoga and being focused as well as being pretty proud of my progress.

Sleep became a priority. I found a sleep app that tracked not only how long I slept but also how much light and restful sleep I got. I have learned that: a) I feel best when I get 7 hours of restful sleep; b) too much alcohol before I went to bed decreases my restful sleep; c) exercise typically increases my amount of restful sleep; d) not enough sleep usually mean I’m not going to be as peppy and patient throughout the next day; e) the less sleep I get directly affects my eating habits the next day (and not in a healthy way). Overall, I learned that sleep is essential to my overall health.

I started watching The Office. As a school counselor, I have learned about the science behind how laughter affects the brain and can improve your mood and mental health, which is why I knew that if I was going to watch something, it had to be my kind of funny. Michael, Dwight, Jim, Pam, Stanley, and the rest of the crew at Dunder Mifflin are my kind of funny!

With the help of my husband and my counselor, I began to reconcile with things from my past that were still affecting me even though I thought I had put those people and things behind me. I learned the true meaning of forgiving and letting go of the pain of the past. I learned how to finally forgive myself for the hardships and the mental and emotional pain I had inflicted upon myself and endured from others.

I rediscovered the importance of not comparing myself to others. Although I am nowhere near the perfectionist I once was, I still fell into the trap of comparing myself to other women in various ways – physically, spiritually, intellectually, professionally, etc. I stopped following people and groups on social media that served to be a source of unhealthy comparison rather than positive inspiration.

I experienced the beautiful power of relationships. Throughout my life, I have had the opportunity to meet and know some truly amazing people, and firmly believe in the idea that people have come into my life for “a reason, a season, or a lifetime”. I have been especially thankful for the people in my life who have supported me and cheered me on during this turbulent season of life. These people have helped me to remember who I am and who I wanted to get back to being. For their love, support, and encouragement, I am forever grateful.

Finally, and most importantly, I was patient with myself. As fantastic as it would’ve been if I had woken up after the end of the first week or even the first month, thrown off the covers, and announced, “I’m baaaack! All better!”, that didn’t happen. Sometimes it seemed like I was moving backwards and sometimes I felt like I wasn’t moving at all towards feeling better. Then there were the “A-HA!” moments and days that I could feel myself moving forward that helped me to know I was on the right track. There were the glimpses of the “me” that I had been missing that motivated me to keep working.

Three hundred eighteen days and counting. (Because I’m working every day to maintain my progress…I haven’t put in all this work to go back to where I was!)

Why have I worked so hard to gain control over my overall health for the last three-hundred eighteen days?

Simple. (Kind of.)

I did it for me.

Because I deserve it. I deserve to feel good physically, mentally, and emotionally. Because God didn’t create me to lead a life of sadness, hopelessness, frustration, and gloom. Taking care of myself – mind, body, and soul – has helped me to love who I am again. It’s helped me to be a much better wife, mother, daughter, sister, friend, and advocate. Taking care of myself benefits everyone in my life. 

I know that I’m not alone in feeling lost, alone, unhappy, burned out, etc. My hope for anyone reading this thinking, “Where do I start?” Start where you’re at. Make today your Day 1. Your journey will most likely look very different from mine, but you’ll never know what yours looks like until you start. Once you start, take it day-by-day, hour-by-hour, minute-by-minute. You’re worth every second.     

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.