Loving Families with Special Needs
Growing up, I had limited personal experience with people of different abilities. But when our firstborn son was diagnosed with a genetic disorder that explained his developmental delays and health issues, I was abruptly plunged into the world of special needs parenting.
As our son— has grown from a curly-topped toddler to a spunky, hilarious ten-year-old, and his struggles have grown right along with him, I’ve learned that people don’t always understand him or us, and that special needs can cause rifts and isolation. As the body of Christ, though, we’re called to be in community with one another. So how can we do that?
I’ve experienced firsthand the looks, questions, and distance disability can cause in the church, often because of people’s lack of proximity to the challenges and joys of people with special needs. I want to help others learn how to bridge the gap with families like ours.
The Line between Pity and Love
First, I’ve learned the very fine line that exists between pity and love. One person looks at our son with pity, saying, “I could never parent a child with special needs.” Another person speaks words of life to us, saying, “He is nothing less and nothing more than a very special piece of you.” As part of the body, may I exhort you to overcome thinking such as, “Sure glad that’s not me and my family”? Instead, get to know those who are affected by disability, and then speak love and truth into their lives.
A Family like Any Other
Second, I’ve learned that a diagnosis explains some things about our son, but it doesn’t define him. Yes, his disability affects almost every facet of our lives, and it’s easy to let a diagnosis become the only lens through which we see and are seen—Oh, we’re/they’re that family whose son has special needs. But at the end of the day, we’re a family like any other. We have work and school and family movie nights and piles of laundry to get through. We have much more in common with your family than not. May I exhort you to push past what initially may feel uncomfortable and invite (or accept the invitation) to spend time with one another?
The Need for Daily Grace
Third, as a family living with special needs, I’ve learned that we cannot just grit our teeth and bear it. We may very well end up spending our empty nest years as caretakers for our son, which means if I live to eighty-five, I will have spent more than fifty years devoted to special needs parenting. This is a marathon, not a sprint. Just as actual marathon runners have people cheering them on from the sidelines and water stations along the way, special needs parents need that kind of support, too, whether their child is five years old or forty-five years old. Let me urge you to small acts of kindness. You can send a card just because. Or deliver a meal. Perhaps give an invitation for (all) the kids to come play or offer an hour or two of respite care. This is the kind of the daily grace that sustains and encourages special needs parents just like us.
The Value of Questions over Assumptions
Finally, being a special needs parent has taught me the value of questions over assumptions. When people hear our son yelling at someone, they might assume he’s a kid with a bad attitude, not understanding instead the difficult cocktail of anxiety and impulsivity genetics has dealt him. I’ve seen people respond in all kinds of ways to his behavior. The least helpful are uninformed interpretations and judgments about his actions. The most helpful are the kind, genuine questions from people seeking understanding and ways to help.
If you know a family with special needs, I want to assure you that you don’t have to know all the right things to do or say; we’re genuinely glad to have you in our lives, and we can learn together. If you’re a family living with disability, like us, may you find the courage and grace to reach out and connect with others, knowing that in Christ, we are one body, and none can do without the other.
“There is one body, but it has many parts. But all its many parts make up one body. It is the same with Christ. We were all baptized by one Holy Spirit. And so we are formed into one body. It didn’t matter whether we were Jews or Gentiles, slaves or free people. We were all given the same Spirit to drink. So the body is not made up of just one part. It has many parts…God has placed each part in the body just as he wanted it to be. If all the parts were the same, how could there be a body? As it is, there are many parts. But there is only one body. The eye can’t say to the hand, “I don’t need you!” The head can’t say to the feet, “I don’t need you!” In fact, it is just the opposite. The parts of the body that seem to be weaker are the ones we can’t do without” (1 Cor. 12:12-14; 18-27 NIV, emphasis added).
is a writer and teacher who lives with her family in South Carolina. When she’s not pondering words, she enjoys hiking, learning about natural health, and drinking the perfect latte. Allison loves to connect with others about family, special needs parenting, mental health, grief, and faith. Her writing has been featured on The Mighty and Her View from Home, and you can find more of it on her blog Writing Is Cheaper Than Therapy.
Photograph © Larry Crayton, used with permission
