Dear Church, and I mean Church with a capital ‘C’, meaning the world wide community of believers, not an individual building or single congregation. Dear Church, we are failing a large number of families. We cling to an incorrect philosophy, and by doing so, make many families feel unwelcome in our services. I, too, have been guilty of this, and am hoping to help make a positive change. The incorrect philosophy is this – ‘Good parenting equals good behavior’. The assumption that goes hand in hand with this is – ‘Bad behavior is the result of bad parenting’. I fervently believed this. I am guilty of judging other parents who had consistently poorly behaved children, thinking that they were not given proper discipline by their parents. I am ashamed of myself, and humbled.
What I didn’t know is that there are many developmental disorders that are invisible. And the kids who are high-functioning blend in so well that when a problem arises, we automatically assume that it’s misbehavior instead of an issue relating to their disorder. And then we judge the parents. Not overtly – that would be un-Christian – but with a smile and condescending attitude we make ‘helpful’ suggestions on how they can avoid this kind of misbehavior in the future.
And it’s hurtful.
Marvin has Asperger’s Syndrome which is on the Autism Spectrum. He’s ‘high-functioning’ which for our family meant that he wasn’t diagnosed with it until he was 7. Which means we had 7 years of others implying that our ‘bad parenting’ was causing his behavior, causing me to doubt my own parenting. (He was diagnosed with ADHD when he was 5, but many people, including Christians, believe that ADHD is not a real disorder.)
Parents of children with invisible special needs are judged wherever they go. I have a friend from my support group who tried to get her son a haircut, and was asked not to return to the hair salon. There are grocery stores that I will not return to. Playgrounds that I avoid. Special ‘fun events’ at the library that we tried, and aren’t going to try again. He’s been kicked out of a YMCA camp – even though I talked with the staff at length about his needs before sending him. I have cried during his dental appointments because all I could do was help hold him down while he screamed and fought the dentist who was trying to extract a tooth. It took 7 adults to get that tooth out. And yes, we did remember to give him the sedatives his doctor had prescribed before the appointment. One time, at a department store, my husband and I were very pleased with Marvin’s behavior. He would run ahead of us and behind us, but always within eyesight (a HUGE accomplishment), and even ask before touching things (sometimes). And then we heard it. Another customer, commenting to his friend as he walked by us so we would be sure to hear, “I really wish parents would control their kids.”
This is what it’s like for us, out there in the world. Believe me, it’s easier to just stay home. But we know we can’t do that, either. Because our kids have to learn how to interact with the world. And so we take a deep breath, and brace ourselves, and head out into a world where we are going to be stared at, and have others frown at us and shake their heads, and on a bad day, hear hurtful comments or be asked to leave.
I love Jesus. I really do. Going to church is a big part of our family’s life. I even direct music at my church! When we’re visiting friends and family, we like to go to church with them. But when Marvin was a toddler and preschooler, going to a different church was one of the most stressful things in the world. He was too old to be allowed in the nursery; he needed to go to children’s church. But kids couldn’t go to children’s church until after the music. And he was supposed to follow the herd of kids and go with adults he didn’t know. Not to mention that the music was loud and unfamiliar, and he wouldn’t sit still and would try climbing over or under the seats….. And then, if we successfully got through all of that, and we were sitting in the service and he was at children’s church with the other kids, there was fear. The sense of dread. Just waiting for someone to come and get us because our kid was out of control. Or worse, hearing the meltdown and knowing everyone else could hear it, too. I confess, sometimes we didn’t go. Or one of us would stay home with Marvin and the other would go to church. Other times we would try to keep Marvin with us throughout the service. We’d have books, crayons, and quiet toys to keep him occupied. And that would work for about 10 minutes. Then he’d get overstimulated and agitated, and a well-intentioned usher would approach us and ask us if we would like him to show us where children’s church was. The message received was – ‘Your child is disrupting the service and needs to leave.’
So there you have it. The story of my family afraid to visit an unfamiliar church. If Christian families feel this way, how do you think other families feel?
Church is supposed to be a sanctuary. A place where people are made to feel loved and welcome. It’s ‘good news’ after all. We’re called to be like Jesus. Jesus said, ‘let the children come to me’ (Matt 19:14) not ‘let the well-behaved children come to me’. Jesus also said, ‘Come to me, all you who are weary and burdened, and I will give you rest.’ (Matt 11:28) I think parents of special needs kids are the epitome of weary and burdened. And yet church is a stressful place for us.
I hope you’re still with me. I’m not trying to say ‘poor me, poor me’ or ‘everyone’s a big meanie’, I’m trying to show just how pervasive this issue is. And I want to help change it. The first step, I believe, is to become aware of the problem. Congratulations! By reading this far you’ve completed step 1! Step 2 is education. We get sermons preached on the poor and the homeless, on reaching out to our neighbors, on stepping out of our comfort zones, on having faith and trusting God – why can’t we also have sermons about supporting the ‘invisible’ special needs? About learning what real help looks like? About the danger of falling into snap judgments about other parents? The kind usher who wanted to show me where children’s church was could be taught instead to ask, ‘is there anything you need or anything I can do to help you?’ That would be so much more helpful! I can imagine myself saying ‘could we have a couple more bulletins for him to draw on?’ or ‘can we pace at the back of the sanctuary so he can have some movement to settle him?’ A simple change in phrasing makes things much more welcoming.
We, as Christians, are called to be salt and light in the world. (Matt 5:13-16) Living a life that radiates Jesus’ love for others. Making them curious, and wanting to come and know more. The CDC statistics currently report that 1 out of 68 children have an autism spectrum disorder. Children! Let’s say that every family has an average of 3 kids. That means that roughly 1 in 23 families are affected by autism. And that’s just autism! There are other ‘invisible’ disorders that cause behavior problems – ADHD, Fetal Alcohol Syndrome, Pervasive Developmental Disorder, Sensory Processing Disorder, etc.
I don’t know about you, but the thought that the Church is a frightening and stressful place for at least 1 in 23 families makes me sad. And angry. This is NOT how it should be.
We need to educate our congregations, and figure out ways to make our facilities more welcoming. Perhaps a quiet room for a parent to take an overstimulated child or an alternative to children’s church where a child can look at books, or do a puzzle, or build with blocks instead of having to participate in the standard children’s church format, which for kids with autism, can be loud and disorienting and scary. These are only suggestions to get us thinking and I’m sure there are many other things that can be done, and with very little effort. There is a need, a huge need, that the Church needs to open its eyes to and strive to fulfill.
There’s also another side to this. School. When Marvin was about to start 8th grade, we moved him from public school to a private Christian school which he is now attending for his 9th grade year. We moved him because even though he had made tons of progress with his social skills, the other students could only see him as he was in elementary school. And the teachers had too many students to be able to help him navigate some of the larger social issues. So we moved to private school, and my husband and I found ourselves needing to educate the teachers and staff about autism. They had no special education services, and didn’t know much at all about autism. Working together, we’ve been able to make school successful for Marvin, but it is far from effortless.
At my support group, a new mom came who had just gotten an autism diagnosis for her son. She asked us about where to send him to school. As happy as our family has been at private school, I encouraged her to send her boy to public school. Why? Because this family needs much more support right now than a small private school can provide. This boy needs therapies that the public school can provide. There are counselors and special education teachers that can help her and her husband learn about autism and how to help their boy at home. At the public school, there are people trained to give an autistic child what he needs while the child’s parents try to adjust and learn about their child in a new way. Private schools don’t have that (at least ours doesn’t).
Public school also exposes the average student to children with special needs, whether they realize it or not. While this can sometimes lead to confrontations and bullying (sometimes by the special needs kid), it also challenges them to learn how to get along and work with these kids. And more than once a counselor offered to go into Marvin’s classroom and help explain autism to the class.
Are private Christian schools educating their students in any way about autism or other ‘invisible’ disorders?
Marvin came home last week and told me about a conversation he had with other students that hurt his feelings and he didn’t know what to do about it. These students were talking about organizing a prom, and as this was the first time Marvin had heard anything about it, he asked them why they don’t let him know about this kind of thing. Their response? “Because you always make it awkward.” These are nice kids, but they have no idea how to communicate with my son in a kind manner. Their response makes me think that perhaps they think this is something that Marvin can control, and that he makes things awkward on purpose. I don’t really know. What I do know is that Marvin is the first kid to attend this high school with an autism diagnosis. And nobody at this school seems to understand what this means. This is a school, why aren’t they educating their students about this? Especially since it’s a disorder that affects 1 in 68 children. And these children will become their college roommates and later their co-workers. Can we help them learn, before these situations arise, some basic facts about autism and other ‘invisible’ disorders so they can be understanding and appropriate? So they can be loving, accepting, and welcoming servants of Christ?
Please, please Church, open your eyes to this. Please love these families in ways that meet their needs. Please learn how be welcoming to these families. Please lead the way.