Not Alone: Special-Needs Parenting
The stats are in. Families living with special needs are anywhere from 1.15 to 1.84 times more likely not to attend church. These special needs include autism, learning disabilities, traumatic brain injury, speech problems, and more. (See study results from a recent Key Ministry blog post by Steve Grcevich.) And a moderately decent number of churches are actually trying to do something about it. But behind these numbers are real people. Real church leaders. Real lay people. Real moms and dads, grandparents and foster families caring for kids with special needs who want to go to church. There are real youth pastors and children’s ministry leaders who are meeting amongst themselves, asking questions about how to reach out to these unreached or unengaged families (not necessarily for lack of desire). They’re questioning how to be more “inclusive”, and defining what that even means for their church community. There are exhausted and weary parents sitting together at 4:26am over seriously strong coffee because that’s when their kid wakes up every morning, asking themselves if they can do it this week. Will their daughter be able to even tolerate the music during corporate worship? Will their son just sit and do puzzles in the corner during Sunday school? Will leaders even try to engage them?
What if there’s a meltdown?
What if she has a seizure?
What if my 13 year old has an accident during youth game time?
And behind all the questions of both church and family lie five simple principles. These shared principles, if answered well, will enable church leaders to win the hearts and trust of the families they’re trying to reach and will prove to families that church leaders really do care. So, what is it that we all truly want?
- We want our kids to be SAFE.
This seems like a no-brainer. But it’s an absolutely necessary first step for churches to take before any parent registers their child or leaves them with someone who may very well be the sweetest person in the whole wide world, but is nonetheless a perfect stranger to both parent and child. We can’t just take your word for it. Have you even seen the news?! We need certain guarantees. While we do know you can’t guarantee nothing bad will ever happen, you CAN go to great lengths to ensure the safety of our children to the best of your ability.
This may mean extra sign-in/sign-out precautions you don’t yet have in place. This may mean budgeting for better technology. This may mean extra time spent training your people to deal with medical fragility, Epi-pens, seizure meds administration, tube-feeding, etc. This may mean extra volunteers every Sunday morning. Do what you must, but please, we beg you, keep our children SAFE.
2. We want our kids to be WELCOMED.
Have you ever walked into a new place, looking around for someone to help you, only to see that everyone seems to be preoccupied with talking to someone else? Have you walked into a meeting somewhere – maybe even church – and people don’t even look at you, or if they do, they look away without engaging with you? It’s not very comfortable. You immediately get a sense that you don’t belong, or that they don’t care that you’re even there. It’s one reason I love the restaurant Moe’s — yeah, you read that right. Every time a customer walks through their doors, they yell out, “Welcome to Moe’s!” regardless of what they’re doing. How can you make sure families that walk into your doors feel as welcomed as hungry Moe’s patrons? (Because believe me, these families are hungry for something other than chips and tacos.) One word: SMILE.
Facial expressions are the easiest and cheapest form of engagement with another person. It doesn’t cost you words, good grammar, or even sanitized hands (though those are all excellent and encouraged ideas too.) Simply smiling at a person automatically lowers their defenses. It tells them they are safe with you. And seriously – who would want to try to break down the psychological walls of Mr. Angry Eyes greeting a family after going through a sensory battle with their kid just 15 minutes earlier? I was once a part of a church who received negative feedback after one visit on Sunday morning. The comment? “Your church was too friendly.” If you’re going to get negative feedback, aim for the most positive negative feedback possible. Don’t give them a reason to want to leave. Smiling will help with that. (But not creepy smiling. That’s no good.)
3. We want our kids to be INCLUDED.
Isn’t that the same thing as welcomed? you ask? No. No, it’s not. Because welcoming says, “Hi, we want you to come inside.” Included means “Hi, come inside andbe a part of us.” Included means you’re not going to separate out their kid because they’re different, or their mental ability doesn’t match their age. Included means doing things alongside them, as part of a group. This can certainly be helped in the way of training for your teachers and volunteers, but mainly, it means using good old common sense. How would you feel if you had to go into a room with a group of people for an hour, and no one wanted to sit by you? How would you feel if no one said, “Hey! Come play (or sit) with us!” Not only do you not feel welcomed, but you’re also not included in any activities by the other kids, and you’re left to eat the black jelly beans all by yourself, because the black jelly beans are gross and you’re weird for eating them, so no one wants you to sit at their table (that may or may not be a true story of visiting a Sunday school class as a child…)
The biggest piece to this inclusion puzzle isn’t just training the teachers or buddies. It’s fostering inclusion among the kids who show up. Pair kids together who you think are good at bringing someone else in and can be friendly and engaging. Find a common interest among one of your regular-attending kids and the one who is visiting or maybe has moved up into that class recently. Teach the kids how to engage those who are different than themselves. Parents aren’t the only ones who can work on this social skill with their neurotypical kids. Teach your teachers how to foster an inclusive environment among the kids themselves.
4. We want our kids to be ACCOMMODATED AS NEEDED.
This really goes hand in hand with inclusion, as true inclusion enables all individuals to participate as fully as possible. This may mean certain accommodations. Think basic accessibility. Is there space at the table if they’re in a wheelchair? Maybe it means they get to play with a fidget to calm anxiety. Maybe it means allowing them to draw while you’re teaching the lesson because they need to do something with their hands. Maybe it means having a buddy with a child so they can be a one-on-one aide to them during class time and help them as needed, or take them down the hallway for a walk if they get overstimulated. Parents will be more than happy to explain what their child needs, or what they may want. This doesn’t have to break the budget. But it might require some out-of-the-box thinking. And if you’re able to think like that, you will speak the language of any special needs parent. We don’t live in boxes and neither do our kids. Join us outside of the box!
5. Lastly, but I believe most importantly, and the inspiration behind this entire post: We want our children to feel WANTED.
How is that different from welcomed and included? There is a difference between tolerating the presence of someone in close proximity to you, and actually desiring to sit next to them and engage with them. Would you want to go grab some coffee with the stranger behind you at the grocery store? You don’t mind them being there, but you’re probably not planning to build any relationships with them. There is a difference between politely smiling and saying the usual, “How are you?” and actually wanting to hear a genuine answer, and be interested in the life of the person you’re talking to. There is a difference between seeing someone you know with whom you don’t mind shooting the breeze, and seeing your best friend and showing excitement when you see them because you’ve missed them and want to hang out.
This doesn’t mean our kid has to be everyone’s best friend (although we won’t begrudge them that if it happens!) But it does mean that when we see other kids inviteour kids to join an activity and they look like they’re truly enjoying the company and personality of our child, our hearts melt just a little. Our eyes tear up a little, because this is what we want for them. When a person is truly wanted, they are being loved.
The reality is, this is really and truly what we all want for ourselves, whether we acknowledge it or not. Some may hide behind pride and a confident smile, but really, we all just want to feel wanted. We want to be loved. We want to know that people look forward to seeing us. That people truly enjoy us for who we are as a person. It’s what endeared sinners to Jesus. First, he saw them. Then, he engaged them. Then, and in a most daring way, he invited himself into their home, and by doing so, he showed them he truly wantedto be with them. Because no sane person would willingly dine with those horrid sinners. No one wants to step over the threshold of a tax thief or prostitute’s home. It’s not safe.So when we see our child is truly wanted by others, they are showing everyone else who’s watching that our child is safe to be around. Our child needs to be kept safe, and not just in a physical way. We’re counting on you to help us teach the world that disability doesn’t mean unsafe.
And we special needs parents are counting on the fact that you church leaders understand this instinctive and basic human need to be loved by feeling wanted. Because if you can understand that, you can understand exactly what our child needs. We’ll help you with the rest. We’ll help you figure out what kind of chair our kids need to sit in, or if they need a visual schedule, or fidgets to play with, or if they need to pace while you teach, or have to be fed through a tube. All of that is secondary. We can figure that all out together, as long as we believe that you know what it is to feel wanted, and do everything in your power to make that a reality for our child; and to be honest, we need that ourselves as parents too.
P.S. Parents, you need to know that despite misgivings, misunderstandings, and flat out total failures, there are churches and church leaders and Sunday school teachers and youth volunteers who truly understand and want all of this for both your child and you. They really do want all the same things you do. They don’t always get it right. (When do any of us get it right all the time?) Maybe they can’t even necessarily articulate all of it in these ways. But don’t give up on them, especially if they’re really trying. Find something good, start there, and build on that. It’s not going to go from “eh” to “wow” overnight; it takes time. Sometimes, it’s good right from the start. Other times, and most of the time, it takes time to get good. That means perseverance. And seriously, no one wins at perseverance more than we special needs parents do. It’s how we provide for our kids. It’s how we live our lives. It’s how we get to the end of every single day. The hope of being a part of a broken but beautiful church family is worth persevering and pursuing. And remember, you’re not alone! Because churches everywhere are persevering too. Let’s do it together.
Sarah Broady is a speaker and writer for her blog, Hope in Autism, and Key Ministry. She is a wife and mom to three boys ages 10-14, and her middle son, Sam, has autism. Sarah loves encouraging parents of kids with autism, especially those going through a new diagnosis or struggling with depression. You can find Sarah on Facebook, Twitterand Instagram.
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