This is a piece I wrote for Edge Pieces, the blog of Open Gathering. Open Gathering is a church started by my husband, J.C., (and I am now on staff there as well) that is open to all people but especially children and adults with disabilities and their families. The vision really began as a dream for our son, a church in which he would be free to worship as he is, and at the same time introducing the Christian story and worship experience to him and others, including neurotypical children and adults as well as people of all abilities. To learn a little about our church, you can visit our website, and you can click on this article I wrote for the UncoSynchro blog theme for January.
This was a piece originally published on [D]mergent back in April 2014 for Autism Awareness Month, about a time my son wandered off (and we had to call the police, but we did find him about a block away) and thinking of the time Jesus wandered off at the end of Luke chapter 2. As we near the end of the Christmas season (the Twelve Days of Christmas in the Christian tradition) and away from Jesus’ childhood, I thought of this and wanted to share.
On Sundays, AJ mainly comes with me to church since we live in the parsonage next door, and my husband has to commute over a half-hour away. We are a small but growing church, and as we get more families with children, I keep wondering if we will have a Sunday School class again for children, but it appears that may be a thing of the past. Most of the other parents don’t feel their kids can sit through two hours of church and education (or they don’t want to necessarily come for that long themselves). So AJ comes to my Adult Sunday School class, which is in a conference room right next to my office.
We have had ups and downs. Times when AJ has sat quietly on the floor playing with some of his old toys I store in my office, stacking blocks up and knocking them down, and times when AJ has had a full on meltdown because he did not want to come to church. Then there was the time, on the first Sunday of Advent, when I had AJ sit in my office for just three minutes while I reviewed my sermon; in those three minutes, AJ found a soft wax purple candle and got it on everything–in the carpet, in the upholstery of one of my office chairs, and all over his clothes and face and in his hair. So I had to quickly lock my office, leaving everything there, and let people know who were just walking up the ramp to the office that I was cancelling Sunday School to take my child home and give him a bath. Again, I’m thankful we live next door.
As worship begins, AJ starts out in the front of the sanctuary with me. Sometimes he will sit on the front pew with me, but more often than not he is running all over the place–up and down the aisle, on the chancel, even on the pews. I try to get him to sit down, but he won’t. Once worship begins, after the introit and the announcements, a church member comes up to get him and take him to the back of the sanctuary for the rest of the service (the only reason she doesn’t do it earlier is she drives some of our elderly members and has to get them situated before she can collect AJ). There have been a few times that AJ has sat in the pew up front, or chosen another pew to sit in, but most of the time he roams around in the back of the sanctuary during worship.
Children’s Church has mainly seen AJ running back and forth in fellowship hall while the Children’s Church teacher tries to have a quick lesson with the other students, but it can be difficult. Some days AJ cannot sit still at all. Then, before the end of service, the children (who are only out of the service for the sermon time) come up for the final hymn, and there are days AJ refuses to come back up the stairs. Being 70 lbs now, he can no longer be carried.
Just a few weeks ago, my mother-in-law moved in with us. The plan is that AJ can now stay home through Sunday School and I can get him before worship. We’ve tried it once, and he was very wired for worship and could not sit still, so we will try again this Sunday and see how he does. However, last Sunday I took the day off and we visited my husband’s church. And except for some initial running up front and some sliding across the floor on his back, he sat for most of the worship service on my lap. We were singing Christmas Carols, which are his favorite, but for the most part, he sat and listened–and even tried to sing a few times.
There have been plenty of times I have been distracted while leading worship because of my son. A few times I’ve lost track of my sermon. But my son has a right to be in worship. He is not going to learn how to be in worship if he is kept out. But more importantly, whether he learns to sit through worship or not, he needs to know he is loved by his congregation. He needs to know that no matter what, he is a part of this church family and a child of God. And for that, it is worth all of the distractions he may create.
I began blogging about our journey with autism over three years ago, just before our child was first diagnosed, over on my site Rev-o-lution. At the time, in 2011, my family lived in Oklahoma. This first blog entry, “Top Ten things I have learned along the autism spectrum journey” sums up a little of what I had experienced prior to AJ’s diagnosis, as it was written the day before. The evening after our son’s appointment and diagnosis, I wrote “1 in 110 children, 1 in 70 boys” (which was the diagnosis rate statistics in 2011–it is currently 1 out of 68 children and 1 out of 42 boys according to the CDC). And about a year later, once we had moved to the Seattle area, I wrote “The Starbucks Welcome” about challenges we have faced, as well as times we were embraced by the church when visiting with our child with autism.
These were my first blog posts. The first steps for anyone to learn about welcoming people with autism into the church is to listen to one’s story. Listen to a family with a child with autism. Meet an adult with autism. Listen to their stories. Learn their challenges as well as their gifts (notice in both blog posts, I listed some of AJ’s gifts). And if you are a parent of someone with autism or you yourself are on the autism spectrum, it is important to share your stories, too.
Today, my husband and I along with our child went to visit one of my husband’s church members who is dying. We had another engagement to attend and needed to stop by on our way.
AJ has been to visit people dying before. I do not know how much AJ understands, or any child his age would understand, but he visited my grandmother in her last days. He seems to know something is different as we gather around the hospital bed, as oxygen lines run from the person to a machine. He crept around the bed slowly, and the woman’s eyes opened. She smiled and waved, ever-so-gently, to him. And he smiled back.
Five minutes before, he was having a meltdown in the kitchen of this home because he wanted to eat something and had opened the fridge, and I had said “no.” Pastoral visitations with him in tow have been difficult in the past–he wants to get into anything and everything. He is starting to understand that he cannot eat food off of other people’s plates, but as evidenced by the next home we visited where there was a New Year’s celebration, he took a cookie, tore off a piece and put the rest back on the platter. I had to follow behind to pick up the pieces he left on the platter, to put on his plate and remind him to eat off of his own plate.
I don’t normally bring him on pastoral visits, and neither does my husband, but every now and then it cannot be avoided. And while it can be awkward and difficult, I’m glad he visited this woman today, and gave her a reason to smile and wave one more time.
Here we will blog about our experiences of having a family member with autism and ways in which church is enhanced by having people with autism as members. We will also blog the challenges and difficulties, suggestions we have for church to be more welcoming, and more. We also invite and welcome individuals with autism to share their experience as well!