What You Need to Know About My Son’s Special Needs

The church should be a welcoming, safe place for every child. But for many families of children with special needs, it’s yet another place for their children to stand out or be a burden. I know because my son, Ryan, has autism. I’ve gotten the looks, well-meaning advice, and blank stares from churchgoers and children’s ministers.

Meet My Son

My son doesn’t have a disability that’s obvious. This is almost more challenging. If he were obviously disabled—blind, in a wheelchair, or with Down syndrome—there’d be an understood “rule” that people must be patient, understanding, and supportive.

It’s not apparent that he has a disability, and he’s not alone. The Centers for Disease Control and Prevention recently reported the staggering statistic that one in every 150 children nationwide is diagnosed with an autism spectrum disorder. My son is one of them.

He falls into the category of high-functioning autism, very similar to Asperger syndrome, an autism spectrum disorder characterized by difficulties in social interaction and specialized interests. He’s bright, funny, and loving. He’s just not like other kids.

His language was severely delayed, and potty training was extremely late. He can’t hold a conversation like other kids his age, and, with the exception of his brother and sister, he prefers to play alone much of the time.

At 6, he’s taller and bigger than his 8-year-old brother, but often unable to participate in children’s church like other kids. He’s making progress, and my prayer is that one day we’ll help him realize the plans God has for him. But for right now, he acts “off.” He’s hard to talk to, and his lack of listening may appear to the casual observer as though he’s just a child in need of discipline.

I love my son fiercely. I’ve had him tested and evaluated. I’ve sacrificed time and energy to make sure he gets the therapies and classes he needs, and patiently worked through his fits of frustration when I couldn’t understand what was wrong. There have been tears wept for him, fought for him, and prayed for him.

And one of the many difficulties I’ve faced is trying to tell people in the church what to “do” with my son.

So I write this in the hope of helping children’s ministers get a glimpse of what we—families and kids with special needs—need.

What’s It Like to Have a Child Who’s Different?

If you’re going to successfully work with a child with special needs, you need to understand the emotions the family deals with. If you walk for a moment in our shoes, you’ll be less likely to step on our toes.

We feel defensive.

No parent wants something to be wrong with his or her child. It’s a natural instinct to want to prove to everyone that the child isn’t “that bad.” I still struggle with this. Ryan’s different—not defective. Trying to decide what to tell a Sunday school teacher is painful. He’s not a label—he’s my son. Some parents admit there’s a problem and seek help. Some—unfortunately for the child—hide from the fact that their child is different. They refuse to admit there’s something wrong and get angry when someone says otherwise.

We feel frustration.

There’s frustration with our child when he or she can’t do what we want or what other children are doing. We get frustrated with ourselves for not being more patient, intuitive, or perfect. We get frustrated with other kids for not playing with our child. There’s frustration that sometimes those who are supposed to care for our child see him as a burden. We get frustrated with people for not understanding, for staring, or for offering advice without knowing the entire story. People can be insensitive when they assume they know our situation.

We feel embarrassed and isolated.

What are people thinking of me when my child won’t sit still? Or when he doesn’t listen to my directions? What are they thinking when my child doesn’t act his age? One reason we feel so isolated is that parents of typical kids can’t relate and often withdraw. When Ryan was young, I found tremendous support in an online group of parents with kids like him. We wrote when our kids had breakthroughs or when they regressed. And most importantly, parents with older kids with special needs wrote to encourage us. They pointed out that our kids are normal for who they are and that we’re not alone. This community was truly a gift from God that helped ease my feelings of isolation and gave me hope. We need other people to understand—or attempt to understand—how we feel and what our reality is.

We mourn the loss of “normal.”

I did and I still do. I love my son, and I’m so proud of the progress he’s making. He’s worlds away from where he used to be. But one day when he was 3, I watched him with a group of his peers. The thought occurred to me: My son’s not normal. He’s not like the other kids. And I wept. I felt the deep loss of not being able to relate to him like other moms of 3-year-olds. I mourned all the things he missed out on, and I sometimes still mourn for what the future may never hold for him. It’s necessary and healthy—but it’s mourning, nonetheless.

We feel unspeakable joy.

When kids reach a milestone, every parent is happy. When a child with special needs hits a developmental milestone, his or her parents want the entire world to celebrate. We take nothing for granted. I cried when Ryan first said, “Goodbye, Mom”; when he made a friend at school; the time he first tried to tell me about his day; when he first told me he loved me. I wait so much longer than other moms for these things to happen that, when they finally do, I tell everyone I know with ecstatic glee. Every step forward gives us hope and indescribable joy.

What Can You Do for Parents?

As ministers to children, you’re entrusted with a most special and wonderful responsibility. You’re the first official ambassador of the church and God’s love to my child. And for many parents with severely disabled kids, you might be the only break they get during the week. What an awesome position to be in. Here’s how you can be Jesus’ representatives to families like mine.

Love my child.

Hug him. Greet him with enthusiasm and show genuine interest in him. Be happy to see him—even though he’s the hardest one in your class. And even though I know some days you need to brace yourself to handle him, please don’t ever let me see you do it. Let me believe that there’s someone out there who doesn’t feel bothered by how much extra work he requires.

Don’t try to diagnose my child.

It’s amazing how many parents in my support group have had friends or family members try to diagnose their child because they saw a “thing” on TV. Just because an animal has four legs and a tail doesn’t make it a dog. You may have years of experience with kids or just read a book on a particular syndrome, but it only adds to our frustration and feelings of alienation to have unqualified people tell us our child has this or that label. If you suspect a child in your church has a delay or a problem that the parents may be unaware of, approach the parents with love and recommend they ask their doctor. Don’t label their child; simply give them your observations of his or her behavior while in your care.

Ask what the child needs, and do your best to provide it.

Whether it’s physical assistance or redirecting a child to more appropriate behavior, you need to know how to work with our kids. To include a child with special needs in your class, you may need some direction and should use your best resource—the parents. Parents know their children better than anyone—we’re with them all the time. We’ve talked to their therapists and doctors and know something about their needs. Make parents your allies as the experts on their children, and you’ll win their undying devotion.

Include my child.

One of my deepest frustrations is people who either let my son roam aimlessly around the room, not even trying to include him, or try to physically restrain him until he works into a fit of hysterics. A child with special needs often doesn’t participate in the same way typical kids do, but he or she does want to be included. Let go of rigid rules and be flexible. When Ryan was 3 years old, God sent my best friend, Lori, to take over his church class. She established a routine for every week, and she actively included him. When he wouldn’t sit on the floor for group, she pulled over a chair for him. When he tried to run around, she hugged him and swung him in a circle for a moment and then tried again. He eventually got to know the order of things and happily participated. Her patience and creativity paid off.

Be our pastor.

Pray for us as we handle the enormous responsibility of caring for a child with special needs. The stress of caring for a child with a disability is enormous. Offer a shoulder to cry on or a listening ear. Get excited with us when our child reaches a new milestone. Teach the other children how to accept and love our kids, too.

You’re entrusted with the care of children. Please don’t let our special ones fall through the cracks because they take more work. Parents in your community are praying you’ll step up to the challenge. And I believe this is part of what God has called you to do.

Jennifer Buell is a mom, radio DJ, and former children’s pastor in Rapid City, South Dakota, where she volunteers on the board of the Autism Society of the Black Hills.

What Not to Say

No one ever wants to offend or hurt families of kids with special needs. Use this guide to be positive and welcoming—and avoid pitfalls that push families away.

Don’t say:

• “I’m sorry.” Offer prayer rather than pity: “How can I pray for you?”
• “I know all about what you’re going through.” Don’t try to have all the answers; you never will. Listen first. Offer to learn more. Commit to partner with parents.
• “What’s wrong with your child?” Nothing is wrong with the child; she’s unique and different, not deficient.
• “I’ve had kids like this before.” No, you haven’t. All special needs aren’t equal. Each child is unique with a unique set of needs. Get to know each child and what each needs to succeed.
• “What can’t he do?” Ask about the child’s strengths. How can you help grow those strengths?
• “It must be so hard for you.” This statement assumes way too much. Let siblings and parents of kids with special needs tell you what it’s like; don’t put words in their mouths.
• “I feel so bad for you.” Self-pity, others’ pity, or pity for the child with special needs is disabling. None of us needs pity. Empathy, the ability to feel with another person, is the best emotion and attitude: “Tell me more so I can understand how to partner with you.”

Patty Smith is mom to a child with special needs and the former Director of Ministries with Family and Children for the Tennessee Annual Conference. She’s also a consultant on ministry with kids and church leadership.

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