My Son With Down Syndrome Became a Role Model

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I remember dropping my son off for day care one day when he was around a year old. He had been in his class there for several months by that point. We walked in like we always did, waving to the facility’s administrator on our way down the hall. I carried him into his classroom, handed him to his teacher, and turned to put his bottles into the refrigerator. Then I heard something that upset me more than it probably should have.

It wasn’t something that you would expect to be troubling. The exact opposite; it should have been heart-warming.

It was the sweet little voice of a child that was just starting to learn to say words. The word that came out of her mouth was certainly innocent. And I’m sure her mother was so proud of the way she was able to identify what was in front of her and articulate her thoughts out loud. Indeed, she affirmed what the child said:

“Yes, that is a baby!”

The little girl was not necessarily wrong. The term baby is kind of broad. And at the time, my son was certainly behaving much more like a baby than she was. She was already walking. She was probably feeding herself to some extent. She was apparently talking. Why was this such a hard thing to hear that day? Because this little girl, like most of my son’s class at the time, was younger than him. He had started in a class that was really intended for kids in a different age range from him due to space limitations and the date of his birth.

The point is he was not the baby in that class.

And yet, he was. It was obvious to not only the adults who came into that room, but to his peers as well.

He was different.

And of course he was. His peers just started talking one day, but he sees a speech therapist weekly. His peers began playing with toys without prompting. He had to learn play skills with the help of an occupational therapist. And his peers took their first steps long before he did. He was over two years old before all the hard work he’d put in with the help of his physical therapist finally paid off.

I had expected for differences to be obvious to his peers at some point, but I didn’t think that would happen so soon.

The whole episode concerned me. Would my son always just be that kid who everyone looks on with some level of condescension?

That concern still hangs in the back of my mind. It’s brought to the forefront each time someone calls him a baby, even though he is almost three. It’s a mistake that’s made by children and adults alike.

Recently, though, something unexpected and exciting happened. My son was playing in a room where another little boy was playing. The second child, who is not quite a year old, moved with fascination toward my son. He wanted to see what toy he had. He wanted to get his attention. He wanted to see what this big kid was doing. And when my son smiled at him, he smiled back.

He wasn’t a baby to that little boy. He wasn’t someone who was seen first and foremost as different. He was someone to look up to. Someone whose attention was worth having. Someone who was doing things that he wanted to do.

As they interacted, my son stood up and walked over to a different toy that was elevated above where they sat. The other boy followed him and pulled himself up to see what was so interesting.

Obviously, my son knew what was worth playing with, and this boy who could barely take a step staggered along with him (admittedly to the eventual annoyance of my son) because he wanted to follow him.

The significance of that moment was not lost on me. My son, who worked so hard to learn play skills and how to walk was encouraging this little boy to develop his own play skills and ability to walk. How was he doing it? By being a cool big kid that this little guy wanted to be like.

My son became a role model.

That little boy found a worthy person to strive to be like. He’s kindhearted, funny, curious, enthusiastic, hard-working, and smart. The more I get to know him, the more I see things about him that I wish I would better emulate.

There is no doubt that having Down syndrome makes my son unique. He is not like most of his peers in a lot of ways. And yet, he is so relatable to those who truly seek to get to know him. One new friend of his figured that out pretty quickly. I pray that everyone he meets throughout his life realizes the same thing.

They’ll be better people for it.

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You Can’t Plan Your Child’s Life (And That’s Probably a Good Thing)

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My son is 2 years old. He has Down syndrome, so we have been teaching him sign language to help with his communication. He has learned quite a few signs which he can competently use. Verbally, he only says a couple of words right now. One of them is my name. And he says it a lot.

“Dad-dee! Dad-dee!”

That’s what I heard when I walked through the front door after work yesterday.

I often hear it when I am on the phone with my wife and he realizes that I’m the person on the other end of the line.

Or when he wakes up and is ready for someone to come get him out of his crib.

Or when we’re sitting on the floor playing with his toys. He’ll address me while showing off what he’s working on. He wants me to see what he is doing.

It seems that I may be his favorite person right now. I’m sure that won’t always be the case. One day, he’ll realize that I’m actually a pretty average guy. Or he’ll understand that my wife is indeed the superior parent. But I’m going to enjoy being his hero for as long as possible.

When we received his prenatal diagnosis around the half-way point of my wife’s pregnancy, I wondered what it would be like to parent a child with Down syndrome. All I really had to go on were stereotypes and outdated information. I had ideas and dreams about the life my son would live, but that was when I assumed he would be a typical child. Now that I knew he had a disability, I figured life would be much different.

And I suppose it has been. And it will continue to be. But I dare say that this is probably the case for most dads. Whether your child has a disability or not, you likely have at least some dreams and ambitions for his or her life that will not be shared by your child.

It’s a familiar story. We’ve all seen the tropes play out in movies and on tv shows: The jock dad who doesn’t get his book worm son. The corporate-minded parent with the free-spirited child. The parent who expects their child will go to college, but whose child is not interested in academics. It’s familiar because it’s reality. We aren’t in control of what our kids will be like.

I certainly did not plan for my son to have Down syndrome. I did not expect for him to be developmentally delayed. I did not dream of all of us learning sign language together. There is a lot about my son’s life that I did not dream of or plan on or expect.

I don’t know what my son will grow up to become. I don’t know what all his interests will be. I don’t know if he’ll go to college or get married. Basically, I am in the same boat as any parent who is honest with themselves about their child’s future.

But believe it or not, I was right about some of the things I expected when I began dreaming about raising my son.

I expected a son I could play games with. Do you know what I got? A son who loves to roll his ball back and forth with me.

And I hoped that my son would like animals. I definitely got that one right.

I dreamed of going out in nature with him. My little guy loves playing in his tent and going outside for walks. I bet we’ll have camping trips and hikes in our future.

I looked forward to taking him to church and sharing my faith with him. He may not understand my beliefs yet, but he certainly loves going to church and participating in worship services.

You see, people with Down syndrome are, as the saying goes, more like the rest of us than they are different. Sure, life with my son isn’t exactly what I expected, but I am willing to bet that I would say the same thing if he hadn’t been born with that extra chromosome.

If you are expecting a child (with or without a disability like Down syndrome), prepare to be flexible. But more importantly, prepare to appreciate the uniqueness of your child.

In the event that Down syndrome is going to part of your child’s life, please don’t assume that things will be bad. Different? Probably. But bad? Absolutely not. Your baby will be just like any other child. They will play, laugh, cry, snuggle, dance, and all of the other things that babies typically do.

When I come home after work and see my son, I am overjoyed. Not because he has Down syndrome or in spite of the fact that he has Down syndrome. I am overjoyed because I know that he is my son and because he knows that I am his dad.

He makes sure I know that too. He’s the only person who addresses me as “Dad-dee”.

My Son Told Me That Cows Look Like Cats

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Fridays are generally my day off from work each week. Jude and I have perfected our routine for that day. We get up, have breakfast, go to the gym, grab lunch, take a nap in the car (well, he does, anyway), then we go to his speech therapy appointment. It all flows nicely, so we haven’t made any tweaks to it. We literally do the same thing every week. We even get lunch at the same place because I know he will always eat at Chick-fil-a. I get my spicy chicken sandwich and he gets his grilled nuggets meal. Every Friday. They have gotten way too much of my money.

But we like going there. The people who work Fridays at lunch have grown accustomed to our routine, and they always greet my son like the regular that he is. Last week, they witnessed a monumental milestone in his life.

If you know anything about Chick-fil-a, you know that they have cows as their mascots (who encourage you to lay off the beef and keep on enjoying that chicken). If you walk into one of their restaurants, you’ll probably see those cows in various places. Last Friday, we saw one in the form of a mural on the wall above our table. Well, my son saw it and pointed it out to me.

He grunted and motioned to the picture. He’d done things like that before, though. I acknowledged it and said, “Yes, that’s a cow.” Then we continued with our meal.

Then he motioned toward it again.

I said again, “Yes, that’s a cow.”

This time, he pulled his hands toward his face and signed “cat”.

I animated my voice a little bit and said, “That’s not a cat, that’s a silly cow.” He smiled. He knows what a goofy voice means. I showed him the sign for “cow” a couple of times (which he paid close attention to) and then continued with my meal.

A moment or so later, one of the ladies working that day came to our table with a small stuffed cow. “I saw you two talking about the cow and I had to bring him this.” I thanked her, and she went back to work. Then I continued with my meal.

Then it hit me.

I had just had a conversation with my son about something he was interested in. His interest was so clear that even the lady who was working across the room from our table noticed. He clearly communicated his thoughts using a combination of motions, grunts, and sign language.

He does quite a few signs that he has learned through speech therapy, videos we watch at home, and our own reinforcement throughout the day. And he has used them to ask for things before. But this was the first time I have ever had a two-way conversation with my son about something he was interested in.

We talked about that silly cow on the wall.

We left lunch to head to speech therapy. Per our routine, he fell fast asleep as soon as we started driving. As he napped in the parking lot of our next stop, I looked at the therapy building and thought about what had transpired at lunch.

The extra stuff we do to help Jude reach his milestones can feel a bit overwhelming at times. Fridays are just one of the five days in which he sees a therapist of some kind each week. Sometimes, it seems superfluous and not worth the stress that comes with coordinating and keeping up with all of it.

And then, out of nowhere, you have a conversation with your son about cows resembling cats and you realize how blessed you are.

In case you didn’t know, cows sometimes look like cats, and my son apparently really likes them.

If You Use the R-Word, You Are A Bully

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By now, it’s not news there’s a comedy special on Netflix wherein individuals with intellectual disabilities in general, and Down syndrome in particular, are mocked. The whole bit centers around the comedian’s defense of using the R-word like we did back in the good ol’ days. When I first read about the comments he made in his stand up, I had two initial thoughts: 1) That’s hurtful. 2) Who in the world is Tom Segura?

I had never heard of him. That probably says more about my sheltered life than it does about his notoriety, I suppose. But I think it’s worth pointing out that I probably wouldn’t have ever heard of him had he not made fun of people like my son. I suspect that was probably the point.

He knew what he was doing when he said what he did in that special. He knew what he was doing when he doubled down after receiving push-back. He wanted the attention. And here I am writing about him. He got what he wanted.

There are several ways you can go about getting attention. He decided to go the route of the bully. Hey, it works for third graders on the playground.

The thing about bullies, in my experience, is that they like to go after those who are the most vulnerable. I don’t mean that people with Down syndrome are incapable of standing up for themselves (Kayla McKeon showed us how much that is clearly not the case). I simply mean individuals with intellectual disabilities are a minority group. Minorities are often the victims of aggression because the majority group naturally holds more power. That’s the way it works on the playground. The kids with more power go after the kids with less.

So I wasn’t surprised that he and his fans went after people with Down syndrome and their most vocal supporters in such a cavalier fashion. The language he used was all about elevating himself above those he sees as lesser. The R-word is dehumanizing. It’s easy to tell people to chill because it’s just a joke when you don’t see the punchline of the joke as your equal. We can make fun of them. It’s not like they are people or anything.

Look, it’s clear by the way he has responded that he does not care about being kind. He is perfectly content being a bully. I don’t expect my words to change his mind on that. But maybe this will resonate with someone else. Please don’t use the R-word. Please don’t make jokes about people who have intellectual disabilities such as Down syndrome. Please be kind.

There was a time when I used that word flippantly. Now, I can’t hear it without my heart sinking. That may sound silly to you, but it’s the truth. I understand that people usually don’t use it with the thought in mind that they are dehumanizing someone. I certainly didn’t think about that when I used it. But it’s hurtful nonetheless.

If you don’t want to be a bully, please choose a different word.

Death Won’t Get the Last Word

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As a pastor, I am sometimes asked to speak at funerals. The first time I received that call, it was for an elderly man I had never met. I did not know his family either. I thought it would probably be easy as far as first funerals go because he had lived a long life and I had no emotional connection to him or his loved ones. I was wrong though. There was nothing easy about it.

The funerals I have been involved with since then have been for a diverse group of people. Some have been for people who lived long lives, others for people who we might say are gone too soon. I once spoke at the funeral of a father who was younger than me. It was very difficult.

But the reality is that no matter the circumstances surrounding the occasion, it is never easy. A young father dying in an accident is certainly a different tragedy than the death of a grandfather in his eighties. Nevertheless, both deaths bring pain to the families who are left behind. Death is never easy. It’s not supposed to be.

Ecclesiastes 3 famously states, “For everything there is a season, and a time for every matter under heaven: A time to be born, and a time to die…”

I’ve often heard these verses referenced in terms of death just being “a part of life.” And death is clearly a natural part of our time on earth. It will happen.

But Scripture makes it plain that it happens because things are not as they should be (Genesis 3:19; Romans 5:12). Death is inevitable, but that doesn’t mean that we must be ok with it. As Ecclesiastes 3 continues, it also says that war has its time as well. Surely, we do not think that we should then gladly embrace war as just part of life. It may come, but it will always be a tragedy when it does. Many things that occur naturally are bad.

John 11 tells the well-known story of the death of Lazarus, a man identified as a friend of Jesus. Jesus goes to see the man’s family and is met by his grieving sisters Martha and Mary. Remarkably, he joins them in their grief. John describes the scene with the short and powerful phrase, “Jesus wept.”

Knowing that this was a friend of Jesus, it is clear that he wept because he was sincerely mourning right alongside these ladies. He was mourning the death of this friend of his because in the world that he made, Lazarus should not have died. Jesus is mourning because suffering and death do not belong in his creation. They may happen in life, but things were not meant to be this way.

When we grieve, we know on a deep level that we were not made to endure loss. It hurts so badly because the world for which we were created does not contain such things. Jesus makes that fact clear in the way he chooses to act at Lazarus’ tomb. He came not just to mourn, but to raise his friend from the dead. A feat that would demonstrate the glory of God.

Just as with every miracle that Jesus performed, this act was a restoration of the way that things were created to be.

Hunger did not belong in God’s paradise, so Jesus fed the famished. Illness did not belong, so Jesus healed the sick. Death did not belong, so Jesus raised his friend. Every miracle was a sign of his identity not just because he was able to do them, but also because he is the one who truly knows how things are supposed to be.

The miracles of Jesus are pictures of the world as it was intended. Consequently, they are also pictures of the world that is to come. Tim Keller put it this way:

Christ’s miracles were not the suspension of the natural order but the restoration of the natural order. They were a reminder of what once was prior to the fall and a preview of what will eventually be a universal reality once again–a world of peace and justice, without death, disease, or conflict.

The resurrection of Lazarus was a gracious glimpse of what things will be like when Jesus brings everything back into order. As John describes his vision of the future for God’s people in Revelation 21, we see that just as death and sorrow didn’t belong in God’s original paradise, neither do they belong in God’s restored creation:

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

As I serve families during their times of grief, I know that there is nothing I can do to take away their pain. The only thing that could do that would be the reverse of death. Which is what I think is so compelling about Christianity. The central doctrine of the faith is that Jesus overcame death and was resurrected. As Paul explained, Christ is the “firstfruits of those who have fallen asleep.” Meaning, what happened to Jesus after his death will happen again to all who belong to him. Those who are in Christ won’t be eternally confined to the grave either.

As Paul put it elsewhere, “The dead in Christ will rise.” In light of this glorious truth, he gave these instructions: “Comfort one another with these words.” The pain is real, and we should mourn. Even Jesus mourned. But his mourning was temporary because he is the God who raises the dead. For those who hope in Christ, our mourning won’t last forever. Jesus assures us of that. And he also assures us that until that resurrection day comes, he is with us.

Who better to be by our side than the God who weeps with the hurting?

Calling People ‘Special’ Can Be Dehumanizing

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A few months ago, I wrote about why it’s a mistake to label the parents of children with disabilities as “special”. Ultimately, what makes me (or anyone) a qualified parent is that I love my son enough to take care of him. I don’t have to be some superior kind of person to parent a child with Down syndrome. If something special were required, I’m certain that God will have given my son to someone else.

But I think that there is another important reason for people to reject the view that “God gives special kids to special parents.”

It’s not just a mistaken understanding of what I am like. It is also a mistaken understanding of what my son is like. Saying that Down syndrome makes my son “special” may reflect something quite dangerous. It might reveal a tragic view of people who have disabilities.

Remember, the idea is that it takes a special kind of person to be the parent of child with a disability. The perspective creates a distinction between this kind of person and that kind of person.

Do you see the problem?

When we call someone “special” we disassociate from them. “I’m normal, and you’re special.”

“I’m not special,” you might say, “so I can’t handle a special child.” If you think you can’t handle parenting a child that is not typical, are you perhaps admitting that you’d rather not try? Maybe, it reveals that you see people with disabilities as undesirable members of the family. Full disclosure, I had to admit that about myself once.

Truth be told, the “special people” lie subtly dehumanizes those with disabilities. It’s not something that anyone intends to do, but when you start putting people into categories you inevitably start to rank them. And that is the real problem. People with disabilities are very often seen as less valuable than those who aren’t disabled. And that spills over into how we talk. That’s why people sometimes talk about my son as if he is more like my cute pet than my child. Or why kids (or maybe even adults) sometimes talk to their peers like they are toddlers because they are using a wheel chair.

How we talk is a reflection of how we think. If we have the wrong perspective, we will probably have the wrong words.

So please join me in trying to be more careful with our words. Let’s examine what may be hiding behind our good intentions. If our goal is to be encouraging and loving, then let’s be thoughtful in how we seek to express that encouragement.

And let’s be willing to do the hard work of searching our own hearts to see if we are looking down on others because they are different.

Kind words will mean a lot more if they come from a truly kind heart.

Children With Special Needs Don’t Make Parents Special

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Although my wife is pretty special.

“God gives ‘special kids’ to special parents.” You’ve probably heard the statement. You may have even said it yourself. It’s one that is pretty common. I don’t know if I’ve ever actually verbalized it myself, but I did assume it was true once upon a time. However, I now see that it is simply not the case.

I understand that people mean well when they say it. I’ve done my best to be gracious and thankful to those who have said it to me since my son’s birth. I understand it is intended to be a compliment of sorts. People are just trying to be encouraging. But I don’t think that it’s particularly helpful for anyone.

My wife and I will be the first to admit that we are not part of some exceptional brand of humanity. We get stressed out about caring for our little guy sometimes. We get tired. We become impatient. I can assure you, we are just like any other parents.

Sure, they’re called “special needs” because they are not the same things that every child will face. Our son currently sees 4 different therapists each week. He is 16 months old and just last week sat up unassisted for the first time (and we celebrated that accomplishment big time). That milestone came after many months of working with a therapist. He is still learning to feed himself. He does not crawl quite yet. I would be lying if I said that all of this is not overwhelming at times.

And I suppose that some people watching us see how much we love our son, and how much we seek the best care for him. They may take notice of how much time and effort we invest into seeing him succeed. Their observations may lead them to view us as truly special indeed. The problem is that if you removed from the equation that our son has Down syndrome and were looking at the parents of a typical baby, you would absolutely expect to see people who love their child, seek that child’s best care, and who put time and effort into seeing that child succeed. And if parents of that typical child did not exhibit those characteristics, they would be viewed as bad, selfish parents.

So then, what makes us so special?

We’re just doing what all parents naturally do. When you meet your child, you fall in love. And it’s that unconditional kind of love. When you fall in love with your child, you do what you must to take care of them. Some things are easier than others, but you endure because of the one for whom you are doing those things. It doesn’t make you special. It makes you a parent. It’s a job that anyone can do regardless of what life with our little ones may look like. Kids with special needs are just like kids without them. Little humans who will be naturally loved by their parents. And when those parents fall in love, they step up to do the things that the little one will need for them to do.

Anyone can be a parent to a child with special needs. They only need to have love in their hearts.

This cliché is dangerous because it leads not so special people to think that they are inadequate to care for their “special” little ones. Believe me, you can do it.

If you just found out that your baby will have special needs, don’t assume you can’t take care of them. Don’t be scared. Don’t think for a minute that you won’t like being their parent. I can assure you that you will love that child more than you ever imagined possible. No one is better equipped to nurture that baby than you, because no one will love that baby as much as you will.*

God doesn’t give special children to special parents. He gives children (regardless of their needs) to imperfect, ill-equipped people who slowly learn how to apply their love to the raising of their children.

So please don’t call me special, because I don’t call you that either. Neither of us are.

We are parents. A special job, to be sure. But a job for ordinary people nonetheless.

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*Sometimes, that unconditional love that a parent has for their child may lead them to selflessly recognize that they are not the person who is able to care for him or her. In those cases, adoption is a wonderfully miraculous thing. There are also those tragic situations in which a biological parent fails to love their child selflessly and they are forced to give them away (or they abandon them altogether). In both cases, such children come into the care of other parents who unconditionally love them  as their own. Praise God for adoption. And praise God for those people who bring children into their families as their sons and daughters. Christians view it as a beautiful picture of what God has done for His children through Christ (Ephesians 1:3-6).