How Down Syndrome Is Teaching Me About Discipleship

My wife and I have three boys—an eleven-year old, nine year-old, and a seven year-old.

Our youngest, Griffin, is the star of our family. Most arguments in our family typically center on who’s getting to hang out with Griffin. Griffin’s sort of a big deal. He also rocks an extra chromosome. Griffin has Down syndrome.

We had no idea that Griffin had Down syndrome before he was born. His diagnosis came as a total surprise.

Our response was a mixture of celebration and fear. We were thrilled to welcome Griffin into the world and our family, but scared about what the future might hold. Health problems, educational opportunities, financial concerns were all trigger points.

And while attending to Griffin’s Down syndrome has been full of uncertainty and feelings of inadequacy, no one has taught me more about discipleship than Griffin.

Intentionality is key

With Griffin pretty much everything developmental is delayed. To assist Griffin with his development requires a high degree of intentionality.

Griffin has several different therapists that he sees regularly to help him with his gross and fine motor skills, his speech, and socialization. In addition to “music therapy” at home each week, he’s got an entire team of people working with him at school.

And in between all of these therapy sessions, we have multiple areas that we are focused on with Griffin at home each day. The things “normal kids” figure out on their own, Griffin needs help with.

As just one example, before Griffin was willing to stand up, we had to apply pressure to his feet using our hands for several months so that he would become aware that his feet were designed for standing.

There are probably about 100 more examples just like this. The point is that in order for Griffin to develop, a high degree of intentionality is required on a daily basis. It’s a non-negotiable.‍

The same is true for our discipleship. Intentionality is a non-negotiable.‍

Borrowing from Dallas Willard, "discipleship is the intentional process of becoming more like Jesus." Notice the word intentional.

Spiritual formation isn’t a fluke. It requires intentionality, consistency, and regular attention.

In other words, discipleship won’t happen by accident. People don’t just fall into spiritual growth. Spiritual formation isn’t a fluke. It requires intentionality, consistency, and regular attention.

Willard also famously said, "non-discipleship is the elephant in the church."‍

At least part of the reason this elephant in the church exists is because we lack intentionality. When it comes to discipleship, there is a spectrum of both organic and organized, both spontaneous and structured.

If our discipleship only takes place in organized and structured environments, we risk compartmentalizing following Jesus from our everyday life. But if our discipleship practices only find expression in the organic and spontaneous, then growth will be limited.

I’m convinced that the vast majority of people already know other people they could be investing in spiritually within their existing relational space. It’s simply a matter of intentionality.‍

Patience is essential

Despite all our intentionality and therapy, Griffin is way behind other kids.

Griffin is seven years old and he’s not able to go potty by himself or get himself dressed in the morning. He’s learning how to feed himself, but most meals end with a good percentage of the food on his face or the floor. Griffin has limited communication. He knows exactly what he wants, but often throws tantrums because he doesn’t know how to communicate his needs.‍

Confession: I’m not naturally a patient person. The fact that this is the first descriptor of love Paul uses in 1 Corinthians 13 has always bugged me. But Griffin has taught me to embrace the freedom of patience.

While I just described how far behind Griffin is compared to other children, I’ve learned not to view him this way. I no longer view Griffin from the vantage point of where he should be, but simply celebrate where he is.‍

Effective discipleship requires that we attend to people where they actually are—not where we think they should be.

Effective discipleship requires that we attend to people where they actually are—not where we think they should be.

The reason is because that’s how God relates to us. We often say in our discipleship training, God is so real he will meet you where you really are. Not only do our "shoulds" (where we think we should be) get in the way of us approaching God honestly, but we can also "should" on other people by projecting growth expectations and maturation milestones on them.

In my experience, demanding people to be further along only produces frustration within me, tension within the relationship, and resistance from the other person.

Of course, exercising patience doesn’t negate the necessity of challenge.

Being patient doesn’t mean that I don’t invite people to make forward progress. But the way I invite people to grow starts with where they actually are and then involves surrendering the outcome of their response and effort to God.‍

Not all growth is obvious

I’ve noticed that Griffin’s growth seems to go in spurts. There will be weeks where it seems like he’s not advancing at all and then, all of a sudden, he’ll reach three huge milestones in two days!

I remember when Griffin was really young, my wife, Josie, named this observation with her primary therapist. Her therapist's response, as someone who works with children with special needs daily, was surprising. “Oh yes,” she said, “some weeks you will notice more significant breakthrough for Griffin, but I notice things you don’t. Every time I visit, I see Griffin doing new things.”

Now whenever we are in a stage where nothing seems to be happening developmentally for Griffin, we remind ourselves that lots is happening that we can’t fully see.

The same is true when discipling people.

People are often experiencing growth that is unobservable to the naked eye. On countless occasions, when discipling others, nothing seems to be happening on the surface and then all of a sudden some huge breakthrough happens.

People are often experiencing growth that is unobservable to the naked eye.

It’s only as I look back that I can then see all sorts of subtle things that were happening along the way that contributed to the growth spurt that I hadn’t noticed.

I once discipled an individual for an entire year and felt super deflated because there was almost no forward progress. Later on his spouse shared with me all the ways it had been life-changing for him.

We often get deflated when those we are discipling aren’t moving up and to the right! But part of exercising patience is trusting that not all growth is visible. God is often on the move in ways that far surpass our comprehension.‍

You can’t take people where they don’t want to go

I have a distinct memory from several years ago when attempting to teach Griffin how to use a spoon.

Our therapist recommended using a plastic strap that attached to the spoon and wrapped around Griffin’s hand to assist him in holding the spoon. The strap proved to be a total fail!

Some people have this false impression that people with Down syndrome are always happy. I can assure you this isn’t the case! Griffin experiences the full range of emotions that every other child experiences. He also expresses his emotions just like other children—with well-timed tantrums!

Griffin hated the strap and began to protest the strap with a tantrum at pretty much every feeding. Our first inclination was to force Griffin to use the strap out of fear that he’d never learn how to feed himself. But after three days of tantrums, we realized our efforts were proving counter-productive.‍

Sometimes those you are discipling will stall out because they are experiencing imaginative gridlock.‍

They genuinely want to do something, but simply don’t know how to do it. When this happens, especially if their “stuckness” centers on an area of competency rather than character, the key is to give them tools and resources to expand their know how.

But not everyone is stuck because they don’t know how to do something. Sometimes those you are discipling will stall out because they are experiencing volitional gridlock.‍

This is when a person actually knows how to do something, but simply doesn’t want to do it. When this happens, it’s tempting to employ all kinds of pressure tactics to get that person to engage. Most commonly, we try to guilt, fear, or shame people into action. Such tactics never work.‍

These are the first red-letter words in the gospel of John: “What do you want?”‍

I’m convinced that most interactions Jesus had with people ultimately aimed at helping people own their answer to that question. Jesus refused to force people where they weren’t willing to go. Instead, he simply invited people to follow him and then helped them own their answer to that question.‍

Questions for Reflection:

1. How are you intentionally investing in disciple-making right now?
2. In what ways are you tempted to apply force when disciple-making?
3. How is valuing patience and invisible growth freeing for you?