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Joy: What I understand from being a dad to special needs children

High angle view of father holding autistic son while sitting on floor at home.
High angle view of father holding autistic son while sitting on floor at home. | Getty Images/Maskot

The doctor who helped my wife and me welcome our first son told us something I will never forget. It changed my life.

“You have a son,” the doctor began. “He just happens to have Down Syndrome.”

At that moment, I began — unwittingly — to transform.

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As a young man, I judged people’s worth by their abilities and their accomplishments. I judged my own worth in this way as well. But being a parent of two children with special needs has shown me how tragically foolish this way of thinking is. My sons have taught me how to perceive and accept people as they truly are. My sons have taught me love.

Being the father of my special sons has shown me my many imperfections, as well. Learning to love is a difficult thing. Loving someone else well is among the most difficult things we will undertake in our lives, but the hardest things we do are often the most important.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance,” writes James.

Pure joy.

One of the gifts of truly difficult experiences is that they can impart precisely this pure joy. And in my own life, I’ve found that the joy often becomes the truth of the hardship. It isn’t a consolation prize or something addended to the stories we tell about our suffering. The joy is the story.

And that’s particularly true, I think, of parenting children with special needs. My sons have made me the man I am today. Their love and their lives have stripped away almost everything that doesn’t matter.

But they have taught me, more than anything else, the true nature of joy.

I don’t want to diminish the difficulty or pretend that parents of children with special needs don’t need a lot more support than they currently tend to get. But the fact remains that I wouldn’t have been able to shake free of myself without the challenges of my own fatherhood.

And I know I’m not alone. Of the fathers I know, those with children who have special needs are transformed and inspired by their children. They aren’t discouraged. They don’t find sorrow in their childrens’ disabilities, but joy in seeing them grow, succeed and overcome. They inspire me every day, and I’ve watched them inspire many others.

This is possible in part because they know, as I do, that God created a beautiful, unique purpose for families — and families of kids with special needs are no exception. He created us for joy, love, dignity and trust. No adversity or grief ever truly undermines that.

But we can’t parent alone, especially not when it’s hard. That’s why fatherhood is at its heart a community enterprise — particularly for fathers of children with special needs. Our fathers need stronger churches and stronger friendships. They need us to create joyful, resilient families both at home and at church.

So, build stronger churches by centering inclusivity. I have no doubt that many churches would be improved dramatically by uplifting voices that are, sadly, so often suppressed or ignored. The parents of children with special needs have invaluable experience in sacrificial love and servant leadership.

Bay Area Christian Church, where I’m a pastor, has grown in many ways precisely because of the witness, leadership and inspirational love of families with kids with special needs. Unity like nothing else I’ve seen has grown in our congregation out of a shared commitment to inclusion and love of those with special needs.

And stronger homes extend this love and support much further, and more intimately than a church ever could. One family in particular comes to mind. Their son, who has autism, has been instrumental in bringing many of his friends to Jesus — and their home has become an indispensable hub for our church. 

We can, and should, also build stronger friendships for fathers. If we’re afraid or confused, the worst thing we can be is alone. And there is no reason for any Christian to ever feel or to be alone in the world.

So be a light to the fathers you know. Share your grief and joy and receive theirs in turn. Share your time and talent in whatever way it might be needed — even if it’s just a listening ear.

Connection can take unexpected forms, too. A man I’ve never met in real life has inspired me now, for years. He inspires hundreds of others, too. He shares his journey through fatherhood on Facebook. He shares the joys and triumphs of life as the father to a precious son — who, like mine, happens to have special needs.

Instead of seeing families whose children have special needs as somehow inhibited, we ought to celebrate their resilience. They have triumphed over sometimes heartbreaking grief and fear. Their faith has been tested, over and over again, and proven true.

Through this, we see homes become places of openness, acceptance and laughter. We see churches become places of inclusion and closeness. We see this extend into the community, inviting everyone into the love and acceptance found in God.

In other words, we find pure joy.

Russ Ewell is executive minister of the Bay Area Christian Church. A minister for more than 40 years, Russ’s teaching is rooted in providing hope for those turned off by tradition, and infused with vision for building the transformative church for which the 21st century public hungers.

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