I’ve had an awesome opportunity to chat with some close friends who each have children with special needs. They were kind enough to listen to my ignorant questions and gracious enough to help me understand some of the real struggles that they face each day. They also shared joyful stories of how they have been blessed through their children with special needs.
As I have shared in a previous post, these conversations have changed how I view people with special needs. My views about our communities and our responsibility to these families have shifted as well. What do we do to help these folks already? What do we need to do or stop doing to create space for people with special needs in our communities? How can our lives be impacted by sharing life with folks who are different than we are? What is God’s role in all of this?
Let’s call one of these friends “Ashley”, because that is her name. Ashley Stringer is Harley’s mother, and Harley has autism.
My other friend requested to remain anonymous. Let’s call that friend “Taylor” for no other reason than that I like the name (and it is gender neutral, so you sneaky types can’t figure out who I’m talking about!)
I led in with the question: “What are some of the challenges of raising a child with special needs?” I was prepared for some tough stories, but I was not prepared for Ashley’s quick, honest answer: “Everything is challenging.”
She explained that just getting a diagnosis is difficult enough, but then paying for the doctor visits, medication, therapy, and school was almost impossible.
Taylor’s response was a bit more measured, remembering many incidents of exclusion. In preschool their child was often complained against by other parents. They didn’t want Taylor’s kid around their kids. The exclusion extended into their church communities, where they were relegated to “special needs groups” in the church and kept away from the congregation at large. They weren’t able to be around folks their own age because they were different.
Ashley went on to talk about the shame they all felt when they were out in public with Harley. She described being able to feel people’s stares, knowing that, at best, they didn’t understand. And then she described the guilt that she felt when they found out that Harley had autism, questioning whether she caused his condition by something she did or didn’t do while she was pregnant.
All of these things are difficult for us to imagine. I was overwhelmed with the enormity of the strength and determination that these parents have had to show in coming this far for their beloved children.
When asked what their communities could have done better to help them, the immediate response from both parents was respite care. Sometimes they just need a break. Taylor described some opportunities that they have had to be taken care of in this way, specifically by their faith communities. But they needed more. Ashley said that just hanging out with Harley for an hour so she might take a nap or go get some groceries would be a huge help and support.
Doesn’t seem like such a big request, does it?
The major theme that I picked up on in these conversations was exclusion. Whether it was the subtle looks at the grocery store or the constant redirecting towards the margins, each parent grieved for their child’s not being included in their community. Ashley described the lack of social support in our small town of Rome, Georgia. No sports leagues, no community events, no support groups. And if they are here, she said that they were so poorly advertised that nobody knows about them.
We do see some positives in these bleak pictures. I asked the parents to share the biggest joys that they have experienced in life with their children with special needs. The first response by both parents was to describe how their children loved people and allowed them to learn how to love, themselves. Ashley wisely pointed out that “a burden doesn’t have to be a bad thing.” She describes how close her family has become through caring for Harley. They are better because of the innocence that he shows and the simple joys that he experiences.
I talked to the parents about what their child with special needs would look like in the Resurrection: that mysterious restoration that we are promised at Jesus’ return. They each affirmed that they would not change a thing about their child, except maybe a minor detail that caused them to be especially excluded from society. So the hope for each parent is that their children would find community. Don’t we all want community for ourselves and for the ones we love?
While we were discussing these questions, a friend sitting at the table with us made a radical suggestion. Maybe the Resurrection doesn’t see people with special needs changed in any specific way. Maybe, instead, our idea of community changes, transforming in such a way that we are no longer so different-seeming to one another. Maybe the Resurrection is tied to our salvation that comes from repentance, from changing our minds. Just maybe.
So what can we do for our friends with special needs and their families? For these two parents, the best thing we could do for them is to make space for them. We can be aware of how our everyday actions and language can be used to affirm rather than tear down. Negative phrases like, “That’s retarded,” or, “He’s just special,” need to be called out as contributing to the problem. People who openly mock our friends with special needs should be corrected, not elected to positions of authority.
Instead of setting a separate table for “them,” we need to welcome everyone to Jesus’ table, setting ourselves at the far end to make space for all to come and be filled.