Loneliness, fear, guilt, hope, anxiety, anger, bitterness, despair, joy, relief, comfort, belonging; all are emotions special needs families go through when trying to be an active part of a church family.
It's even worse if they are coming in as visitors for the first time. Depending on the severity and type of the disability, the emotions can be very different.
Truthfully, the thoughts in the minds of special needs families are probably different than you might think. Unless they are brand new to the struggle, most of us have long ago traversed the uncomfortable void of staring children, awkward questions, and conspicuous social gatherings. It just becomes part of your life. What is really going on is far less focused on us or our child than it is on you. We know our entourage is different, sometimes noisy, and can be a burden. I talk to families all the time who are really worried about their "neediness" and being a burden on their church.
The fact is we are all burdens on each other, and the church is designed that way. In fact, Paul says in Galatians 2 that bearing each other's burdens actually fulfills the Law of Christ! I encourage families who are struggling with a special needs family member to allow the church to be the church. It may be awkward at first, but it is as sanctifying for the church as it is for the family.
The hard part comes in knowing what can actually be done to help. People without special needs family members are often very interested in trying to help, and equally as frustrated on what they can really do. I must say that our church does a great job of making all of us feel like part of the family and reaching out to us in any way they can. Here is a very short list of things you and your church can do that actually help when families visit, and they're not necessarily what you might think.
- Be intentional. Special needs families are like super ninjas when it comes to sliding in just after things get started and sliding out before the chaos of small talk ensues at the end. It will take time, but the church can purpose in their hearts to make sure everyone feels at home, welcomed, and appreciated. Seek us out when we are there, but know we might not be able to stay long.
- Be welcoming. Say "Hello". You may not know what else to say, but "hello" is a great place to start to make someone feel like they belong and you are glad they are there.
- Be brave. Don't be afraid to ask questions. We know engaging a special needs family can be intimidating and there are a million things you may want or need to know. It's OK to ask. I once told someone, "It's OK, we know she is different. It's fine to ask why."
- Be gentle. Not with us, but with your own kids. Children are naturally curious and when something or someone different enters their space, they want to know all about it. Don't believe me? Ask anyone with a toddler or elementary age child. They stare, they say and ask awkward things. This, too, is perfectly fine providing they aren't being mean or hateful (which is almost never the case). Let them come over and ask. We are generally happy to answer. Don't scold them for being curious, let them lead you into engagement. They are better at it than us anyway.
I can't tell you how many times a small child asked us what happened to Brynna's lip before her cleft repair. Their parents were mortified, but we weren't. Jesus even told His disciples to suffer the little children to come to Him. The same applies here. Really, it's OK. Sometimes it's a great ice-breaker!
- Be available. No, seriously. Babysit. One of the hardest things for special needs families is to get out for date nights or even alone time. The job never ends, it is a 24 hours a day responsibility. Offer to receive training in caring for the child and give a couple of hours a month to let mom and dad go get a bite to eat. They will love you, but don't be upset if they just sit in the car in the parking lot and take a nap.
- Be aware. The siblings of special needs children are often lost in the busyness of everyday life. They get passed around to babysitters and family while we go to doctors and specialists or care for the sick one. They learn to babysit themselves so we can simply go buy groceries once a week. They are superheros. The family system may revolve around the needier one, but the other planets are very interesting as well, ask about them, too.
- Be tolerant. Let the family bring their child into church as much as possible. This is bigger than you can imagine. I miss the old days when the family went to church together, kids and all. I think we have missed out on some of the sweetest spiritual formation by separating families on Sunday mornings. Providing an atmosphere where anyone can come in and join in worship is extremely heart-warming. Listen, we know our kiddo is loud and sometimes at all the wrong times, but it means the world to us when you want us in your service; whaling, shouting, and all.
In fact, to me, it is a picture of how God treats us. He accepts us for who we are right now. Express that same tolerant love to your special needs families and just let it roll. A "sanitary" sanctuary isn't representative of the Kingdom. Ministering to special needs family can be messy. The Kingdom is messy. Embrace the mess.
- Be considerate. The journey of parenting a special needs child necessarily leads parents to learn more about medicine than some nursing students and even some doctors. I think we should get an honorary certificate of some sort. When we are at church, especially early on, the last thing we want to hear about is that awesome nutritional product, essential oil, or homeopathic remedy that will somehow cure the chronic medical condition we deal with every day of our lives. We know you mean well, but honestly, we are here to worship the Creator of the universe and fill our often empty souls. Besides, we've probably already done the research.
To be fair, though, your advice may actually be useful, but our first, second, or even third visit isn't the time. Let's get to know each other first and then we can talk about medicine. We talk about medicine all the time with doctors, nurses, school officials, and family. Broaching this topic is often best left for us to ask. It isn't that we aren't appreciative, we're just tired.
Another way to be considerate is to think of special needs children when planning kid's events. How can you include them? Are there special considerations for mobility, lighting, diet, supplies, or staff? A great example is the annual Easter Egg Hunt many have. If you have special needs congregants who have mobility issues, make sure they get to the front of the line, or create them a special place and make sure they get to it before the eggs are all gone. Simply thinking about us means a great deal, even if it doesn't all work out like you planned.
I've written about how the church can help foster/adoptive parents and how to help families in the hospital, but this time I wanted to stop and share something that's on my heart about how we, the church, can really impact the lives of families with special needs in the context of the worship gathering.
Comment below with your experiences or ideas on how we can do a better job, or maybe how someone is doing a great job, at ministering to special needs families.
Here are some other great articles I found while thinking through this topic.