Every new pastor receives several questions when they arrive to a new church. Who are you? Where are you from? How will you preach? Will you root for my favorite team?
If a pastor and their family have young children, there are additional questions that you get asked week to week. They focus around the idea of how can we love your child? Those are some of my favorite questions to answer, because there is nothing like seeing your child loved and cared for by the family of God. Your immediate thought is to say, “Well, love them like they are your own.”
For me, though, I have to think about how to answer that question. It’s a lot harder to answer, because of our son’s autism.
With each new community, there are additional questions, concerns, and needs that come in welcoming a new pastor kid let alone one who is on the spectrum. While autism has been part of the general consciousness since 1943, there is still a lack of understanding and awareness of what autism is and is not. I include myself in that conversation. Questions about the basics of autism, what needs to be done, and everything that falls in between are welcome for not just our son but the general community of how to love all of God’s children.
While most conversations about our son focus on worship and interactions within the church – that is, after all, where the majority of people will see him – it only scratches the surface of what is involved in raising a child on the spectrum, especially as a pastor.
So, what is it really like to raise a child on the spectrum disorder as a pastor?
First thing to be aware of is that Sunday mornings are not easy for us. On Sundays, I am distracted by everything that needs to be done at the church before worship. That means I’m usually leaving the church well before my wife and son have to get ready. This leaves my wife to do everything to get him out the door, which is not an easy task for an autistic child who is not fully potty trained and has issues with running away from us. Getting ready on a normal day can be stressful or a regular day. It is even more so on Sundays.
That doesn’t even get us to what it is like on Sundays once we enter the sanctuary. I’m up front leading worship. That leaves my wife to make sure our son is not overwhelmed by what is going on. Everything falls on her on Sundays. At the same time, we feel the tension when someone comes up to him wanting to interact with him and he is willing but unable. We’ll share that he is overwhelmed, but it hurts us as much as it hurts you that he has a hard time with crowds.
By the time worship is over and we are all home, we are all so exhausted that we go into our separate corners and hide for a few hours.
We also know church exists beyond Sunday mornings and both of us have a heart to be involved in the life and ministry of our congregation. It’s not always possible for that to happen. There are times when we both cannot be at things, even when we want to, because someone has to take care of our son when he gets overwhelmed. Where this plays itself out the most are situations when the entire family is desired to be in attendance, especially for meals or children’s ministry activities.
We want to be there as a family, and there are times when we will push through because we know it is important. There are times when it is impossible. There are times when there will be too much going on for our son and he will do whatever he can, even leaving our side, to get away from the situation. That means one of us has to always be right beside him. It’s hard to do that when you are focusing on a conversation or doing ministry with others.
So, we’ve established a family rule. There are times when we will push forward and do the best we can, but there are times when you will only get either myself or my wife. Most of the time, it means that my wife is not as involved in things as she would like. We know some have a hard time for that, but the reality is that most things in the life of the church are not suitable for children or adults on the spectrum. As I always say, “we’ll get there, but it takes time.”
That brings up another thing to know. We’ve been hurt by the church by things said and done to our son.
Throughout his life, both before and after his diagnosis, it’s been clear Noah has been seen by some as “not normal.” We’ve even heard someone describe him as that when saying they didn’t want to make too many changes to accommodate our child that would upset the “normal” kids. We’ve been given stories of how to spank the autism out of a child, and if we had more discipline he would be “better behaved.” That doesn’t include the ones who thought our son was dying.
The harshest has been watching families pull away from our son because of his diagnosis. He went from being invited and included to not being invited and included to various events. There is nothing that makes you angrier than to see your child being treated as less than.
As a pastor, I have felt you can only go so far in standing up for your child in the church. When you do, the conversation often turns back to “I’m overreacting” or “they didn’t mean it that way.” It’s easier to advocate for a congregant’s child than it is for the pastor’s child. At that point, even as a pastor, you know you are not going to get anywhere and your child, as loved as they may be by some, is not fully accepted by the whole.
There is nothing more that we want for our son than for him to be treated as a child of God and a person of worth. The same as we want for every child. For that to happen, people have to be willing to see life from the perspective of those on the spectrum and to understand what it is like for them and their families on a daily basis. Understanding leads to awareness and that leads to progress in making room for those who so often feel unaccepted or unwelcome by the larger society let alone the church.
My prayer is for all God’s children to be loved and accepted. When we get that right, we won’t have to write too many more columns about special needs families feeling unaccepted. That is a prayer we can all claim and live out.