The Least of These

I held in the tears long enough to exit the doors of the church we have been attending the past couple of months. As soon as we were safely outside, they let loose, streaming down my face in sheets of sadness, despair, anger, and disbelief. Holding my son and sobbing in the parking lot of the place I should be able to take him without being made to feel unwelcome. To be fair, I wasn’t asked to leave directly, but then again, the reality is, I was left with no choice.

Ezekiel often has a hard time sitting in church. We spent the first few years of his life not attending service together for that very reason. One of us would stay home and the other one would take our girls to church every week. Or we would drive separately, with one of us leaving after the worship songs were over, before the sermon, which was too long for him to attend. Almost three years of that until we were able to find a helper at our old church. What a gift he was to Zeke and to our family. Leaving that church was extremely hard for many reasons, but chief among them was leaving Zeke’s helper behind.

Recently, we have worked on getting Zeke to sit through the worship songs and then giving him my phone with headphones and a baggie of Skittles, so he can sit and play games while we listen to the message. It works about half the time, and the other half, we take turns leaving the service to help him regulate his emotions and resulting behaviors. We tried to minimize our disruption of others by sitting towards the back on an end and leaving if he refuses to be quiet. We thought this to be a reasonable solution. We thought wrong.

This morning was a bit rough for Zeke. He was disregulated as soon as we entered church, making his dislike for all requests known by whining and kicking in his seat. I took him out twice during the first part of the service, to help him understand the order of the service, and when he could have my phone and coveted treats. If he gets those too early, he loses interest too early and we miss church altogether. So, fast forward to about 15 minutes into the sermon. Zeke decides he’s done and I take him out for the third time.

As soon as I’m in the lobby, an usher comes up to us. I’ve had brief conversations with him before, because I sat at the end of a row. He asked me to move into the middle to make room for others, but I said I couldn’t due to needing to get Zeke out during service. He was not happy, but acquiesced. After the service, I took a few minutes to apologize for not doing what he asked and told him that Zeke has special needs. I explained that his behavior is unpredictable and we need to be able to exit if necessary. His response was “well, he seemed to do just fine today.” Yes, that was a good day. Today was not. Today, Zeke was having nothing to do with church and our conversation went something like this:

Usher, “Can I help you with anything?”

Me, “No, but thank you for asking.”

Usher, “Well, the thing is, when you sit here and he screams, everyone in church can hear him.”

Me, “Ok. I’m not sure what I’m supposed to do. He has Fetal Alcohol Spectrum Disorder. If we want to be at church, which we do, I don’t have any other choice than to take him out of service.”

Usher, “We have children’s church.”

Me, “Yes, I’ve tried that with him. It does not work, because the kids are expected to sit for so long.”

Usher, “They don’t sit the whole time.”

Me, “No, but much of it. Also, there are 26 kids in there. It’s a small room. It’s just not an environment he can handle without a one on one helper who can take him out if necessary.”

Usher, “Well, we can get someone for you. There is another boy in there that has something – I don’t know what he has – but he needed a helper and then he was weaned off that and does just fine now.”

Me, “If you can do that for us, that would be great, but in the meantime, I’m not sure what else to do.”

Usher, “Ok, well this is just too disruptive here… What do you want to do?”

Then, as if on cue, Zeke threw a tantrum and kicked his shoe off right at him. I watched while he looked down and pushed it aside with his foot. I looked up at him and said, “I’ll just take him out.” No response. No offer to get my name to follow up. Honestly, it didn’t matter at that moment. I really didn’t trust that this man who didn’t even try to help me by picking up a Croc would find help for my child. We sat on the curb by our car and cried. Zeke because I was sad and me because I was defeated. I had tried so hard to make it work, only to be told in so many words that no, it certainly was not working.

My husband, Jon, stayed at church while I took Zeke to Starbucks to help dry his tears. He loves pink cake pops and even at a ridiculous $2 a piece, I love seeing him smile when he gets one. The irony is, upon entering the store, we were greeted by the most cheerful barista who showed my son more love in 2 minutes at that counter than the usher at church ever showed him in the past several weeks. When Jon left church, the usher walked up to him and said, “I think your wife is in the car.” No offer to get his name to follow up. No offer to help.

Ultimately, this man is ignorant – uneducated – and has no idea what it is like to be me, to be us. However, he doesn’t want to know either. He was told weeks ago what was going on in our family and did not take the time to try to understand. Instead, he wanted to protect everyone else in service from hearing the screams of a four year old who does not fit into the perfect mold of all the other kids who sit in children’s church. In one brief exchange, he unknowingly and, I do believe, unintentionally epitomized everything Christ warned against among those who say they love him.

And this is wrong. The core of my being screams that this is wrong. God created my son exactly as he is. He knitted him together perfectly and wonderfully, disabilities and all. If God wanted Zeke to be different, he would be. If God wanted the child with Cerebral Palsy to be different, she would be. If he wanted the child with Autism Spectrum Disorder to be different, he would be. If God wanted everyone to be the same, to think the same, to act the same, to learn the same, to feel the same, to look the same, to grow the same, to speak the same, they would. Plain and simple. But, clearly he did not and therefore, we who love him should not want that either. We should want to love – to try to learn to love – those God has created just as they are, instead of trying to fit them into a perfect little picture of what we think church should be.

This, of course, is just one man in just one church, on one Sunday. I do not believe this is the heart of the church we have been attending. But I write this because all too often, this is a sad reflection of the body of Christ. It is a known fact that many families with special needs kids do not attend church. Some of them have experienced similar situations to the one we did today and some have experienced far worse. There are a large number of individuals and families in the Twin Cities that have opted to attend a special needs church for this very reason. A special needs church because their loved ones were not made to feel welcome in their previous church. A special needs church. I think I know what Christ would have to say about that. And that brings me to another irony that was not lost on me today. This church we are attending is theologically reformed and those of us in reformed churches really should try to understand and embrace disability, simply by the very definition of what it is we say we believe. But sadly, that does not seem to be the case, at least for us, at least for today. We’ll try again next week.