Thursday, June 26, 2014

What Is The Church To Do?

A blogger friend of mine posted a letter she received from her church informing her of the new policy in the children's ministry department and how it will affect her family. Her daughter with special needs will now be required to attend with a 1:1 parent or other adult caregiver that the family provides. My friend is reeling. 

I felt sick when I read it and my heart was broken for her and her daughter, but also for the church that is so missing the opportunity to be the hands and feet of Jesus. 

I, and so many others, shared the post on Facebook and there has been a firestorm of comments from the special needs community sharing my disgust and dismay.

But it was this comment from a friend with neuro-typical children that prompted this post:
Tara, what would you suggest churches do? How should they handle special needs children, especially knowing that volunteers are hard to come by in any form, much less those that are able to handle special needs? I think asking a parent to come to class with their child is acceptable, but clearly others don't. What are the alternatives?
Excellent questions! I want to address all of them.

But first, I want to give a picture of what life can look like when it involves special needs. 

Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 

I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 

Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 

My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread. If we make it out the door to church at all, it is a major coup. 

A typical Sunday for me recently included cleaning up my son who had removed his diaper, pooped on my carpet, and then painted himself from head to toe with the resulting mess, which of course, prompted a necessary change of clothes for me, as well. If I knew I then had to care for him when I got to church, why would I even bother leaving the house? The truth is, I don't. 

By writing that letter, this church is not really asking the family to provide an aide for their daughter, they are asking them to stay home.  

Which brings me to my next point, written so much better by my fellow parents in their comments about this on Facebook:
Dear church -- please serve and love your families who have children with special needs. They need you -- and really, you need them. There is so much to be gained and learned from those relationships. If you have a huge budget for missions, etc. yet are basically turning away families in your own community, what kind of message does that send? A mission field in your own back yard...  - Lisa Mai Olsen
It gets very interesting when you think about the church being very vocally pro-life --- then shouldn't they be the first ones to embrace and include everyone? - Lisa Mai Olsen
But really, the disappointment for me comes in the fact that the Church is supposed to be the hands feet and heart of Jesus. I have adjusted to the disappointment that comes with the public school system....but God's people are supposed to be different. - Yvette Kelder Bilello
Soo... parents coming to church must be prepared to watch their own child? Why not just send out a note "kindly" requesting families to just stay home and hide their child(ren) from view lest they get in the way. What happened to "Suffer the little children... forbid them not"? Hmmm... - Krista Dunn LaRocque 
This is why I am so passionate about the church embracing disability. This is why it is so important that we teach that all of us, every single one of us, is an important part of the body of Christ. Wonder why special needs families don't attend church? ALL kids are worth investing in, everyone has something to contribute. This breaks my heart! - Ellen Stumbo
Valid points, all of them. We can do better. We should do better. 

What has worked in many churches is the "Buddy Program" in which children with special needs are assigned a person to accompany them to class. That person is specially trained on that child's needs and gets to know them. They can support that child however they need to get the most out of the class. Some churches even have an "individualized spiritual plan" for each child to ensure their spiritual needs are met. 

Some churches have sensory rooms in which children who are experiencing sensory overload can be calmed. Ellen Stumbo has a great post about how her little church is building one, and whyhere

Sometimes just having a room where a parent can take a child and still hear or view the sermon can be huge

Now, as for the question of volunteers. I get it. I am a pastor's daughter. I know that finding church workers is so difficult, especially in small to mid-size churches. 

But I also know that when the heart of a church is worship, there is usually no shortage of willing musicians. When it is missions, the missions budget can surpass that of a much larger church. When a church emphasizes meeting the needs of the poor, the food pantry flourishes. 

We have got to start making these families a priority. 

As my friend, Ellen, so eloquently puts it, "Ultimately, it's not about the ministry; it is about the willingness and the hearts of acceptance." We know when a church is trying. We don't need perfection. We just want to be welcomed and for you to be willing to help us find a way to belong. 

We won't always be in crisis. Personally speaking, my family has a lot to offer. We have gifts and passions that we would love to share. Bo has a lot to offer in his unique package. We have grown so much from knowing and loving this little boy. We just want a church to see beyond the behavior to the gift. We want him to be wanted and welcomed. 

A friend of a friend shared this story in response to the letter. I cried when I read it. I would be undone with gratitude if someone responded to and accepted my Bo this way: 

This is heartbreaking. Our new piano teacher is part of a church with a passion for providing ministry to families with kids with special needs. We started going there and when I said I felt bad that Peter had spit on and slapped his assigned helper in kid's church, she responded that Jesus was spit on and far worse, so they guessed it would be just fine. THAT is what Jesus is looking for in His church body. NOT what is represented in this letter. - Jennifer Loque 

(I wrote a follow-up post to this one, in which I disagreed with something I said here and further expounded on some other ideas. Check it out.)


  1. Phin was blessed to have a buddy for a a season. She made it work. Now he is with us. It's best case scenario for right now.

    1. Bo is with us, too. Until we better figure out what works with him, we feel it's the safest choice for everyone. ;)