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Meet My Son

Jennifer Buell

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.

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 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. I've patiently worked through his fits of frustration when I couldn't understand what was wrong. I've 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 Different Child?
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. We get frustrated 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. We get frustrated 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. I 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; 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; when 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.

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