One of the greatest struggles that Christian parents of special needs children deal with is finding and maintaining a church home in which their child is welcomed, supported and included in the life and community of the church. This is also the mission of many faith based disability organizations, like Key Ministry who seek to provide resources and training for those churches and families who very much need these supports on a regular basis. Yet while just having these opportunities on a regular Sunday morning are a big deal for our families, the times when they are truly appreciated are at the major holidays, specifically Easter and Christmas. These are the times when, above all else, our church homes remind us of how loved and valued our kids are, how they are included in the Sunday School plays and productions, the children’s choirs and special scripture readings and presentations. But what happens when you find yourself in a season where you are between or, completely without an established church home, such as our family recently experienced. What happens when you find yourself with nowhere to go for holiday services, when you literally have no church home on the holidays?
How our family got this place can be attributed to a variety of events that we did not expect, nor obviously want, but nonetheless had to deal with, pray about, and make the best decisions possible for our child and our entire family. I have previously described in other articles about how our family belonged to a wonderful small church for several years that did an incredible job of supporting our family. However, as he became older and his needs became greater, we saw how the church could logically no longer meet his needs and so we moved on to a very well known mega church in the area, where our son was provided with a few different one on one aides in his fourth/fifth grade classroom over two years. When it was time to transition to the middle school room this year, the bottom seemed to drop out very quickly, as all of his aides, for various reasons, could no longer support him there. After a couple of months of inquiring about finding a new aide or aides, the church still had not identified anyone, and by late September I told my wife that we may need to make yet another difficult choice in leaving a church. Like the last time, we did not have a new church picked out yet, but we just knew that if he wasn’t getting support, we needed to make a different choice and so the process began again.
The next couple of months saw us essentially detach from a church experience altogether, as I started to investigate and vet new churches, starting with the much larger main campus of the church we had just belonged to. They would be a great choice for us, since they have a huge special needs ministry and an entire wing just dedicated to it, complete with its own pastors and worship team. However, they just happen to be about 45 minutes from our home, and while we had done some programs and workshops there as well as the occasional concert, we always felt like it was just too far for us to regularly attend. Now, we had to consider it because we just did not have that many choices in our area, and so after several weeks of playing email and phone tag with the ministry leader there, I completed an information packet for our son to attend the services. While that long process had been going on, I had started to speak with some other contacts I knew from our original church who referred me to other churches in the area and provided me with leads. Those also went dry after a couple of weeks, and it was now December, and I started to face the cold hard reality that we may not have a church home on Christmas to attend.
It was then I had one last brainstorm that could actually work for us, and it came out of a relationship that the organization I work for, which serves special needs adults and that I am a program manager for, has with a church in our neighborhood just down the street from us. The church is a lovely Presbyterian community in a historic building in the small downtown of our suburb, and they graciously allow us use of their basement space to run many of our classes and programs at no charge to our organization. Since they obviously have a heart for us and therefore our special needs population, I decided to reach out to the contact I had their who was the facility manager, explained my situation, and he in turn connected me with the youth pastor who would oversee such matters. After speaking via email, we agreed to meet at a local coffee shop to discuss our needs further, and so even though we were only a couple weeks out before Christmas, there seemed to be hope after all. We sat and talked for about an hour, and I laid out what our family situation and needs were, our son’s condition and how he could be supported, and the possibility of a match there.
The end result of the conversation was ultimately positive, as the pastor emphasized it was not an “if” but “when” timetable, and that once he would identify some high school youth who would be interested in volunteering, that he should be able to join the community. This was very hopeful for us, as we envisioned a future years from now when our son, if he could become independent enough, could walk to the church and attend services possibly. So while it seemed like a great long term home, the immediate question I had to ask was, “Can we attend Christmas Eve service?” The pastor explained that he may not have any support for him by then, but that we were welcome to come and be a part of the service, and that the congregation would be very welcoming to him and to our entire family. I said I would be willing to bring him there as a trial and be his support and walk him around if he needed a break, much like I was used to doing for years. The service actually worked out perfect for us, as it was the earliest of any of them, and it was a family service, and it was of course, the closest location of any.
It was Christmas Eve in the late afternoon when I pulled into the parking lot of the shopping plaza next to the church where we had been directed to park, and I watched as many well dressed families made their way to the church’s side entrance. My wife had other errands to run and so I agreed to bring him by myself, and together we walked into the congregation, through the familiar doors where I entered to run my organization’s programs, but this time walking straight up the stairs to where the sanctuary was located at. I peeked in and saw what was a classic early 20th century church sanctuary, replete with fine woodwork and brilliant stained glass, with two rows of benches on each side. We made a quick stop at the bathroom prior to getting settled in, and when we returned we sat in the second to last row on the right, as this would allow us to make a quick exit if he needed a break, as usual. I sat in silent awe at how packed the entire space was, families with kids all huddled in their benches, with the not so silent voices of conversation wrapping the space in anticipation. After a few minutes wait, the service began with some singing from the children’s choir accompanied by a small band with lyrics and versus projected onto the walls opposite of the main stage.
The emotions I felt at this point were profound, as this wasn’t just another service on another Christmas, this was me and my son, once again in a new church community, strangers in a familiar yet unfamiliar place, trying to find our place. We sat in the bench for the first 15 or 20 minutes of the worship music and scripture responses, my son mostly focusing but with his usual fidgetiness, and I squeezed him as tight as possible to give him input. After that time had passed, I felt like he needed a motor break, and when I asked him he responded with his usual soft “yeah”, being non-verbal but still knowing his yes from no. I grabbed our coats, the bulletin and the candle that we hope to light at the end of the service, and we went for our traditional walk around the building, but this time being very new. It was a much smaller building than we had been used to over the last several years, but we still were able to find several spots on the second and first floor to explore, finally setting on some couches what the signs at least referred to as the Narthex. He rolled and played on the couch for about a good 20 minutes, being able to get a motor break and stim as much as he wanted, with essentially no one else around except for the occasional family with small kids who also needed a break. While the building was newer to us, the situation was not, as here we were sitting outside the sanctuary because we couldn’t sit through more than 20 minutes of music, and certainly could not sit through another 20 minutes of a sermon. I was content that we found a spot to be, yet felt as separated as I may ever have, knowing we were totally new and not connected to anyone here, desperately hoping my son may find a long-term home here. I meditated on the words of the sermon, trying to find something in the pastor’s words to hang on to, while equally wrestling with the grief I felt that we somehow had nowhere to belong to.
When the service reached its end we made our way back in for the candle lighting ceremony as they sang Silent Night. It was a tradition we were familiar with from our first church, as they would light the candles and stand around the sanctuary, this time because of the layout, people just stayed in their benches. We of course, stood at the very back, my arms holding my son and our shared lit candle stable as much as possible while the congregation went through all of the verses. It was a beautiful moment, and as much as I tried to find joy and peace, it was made so much harder because of the knowledge that we were alone, albeit in a large crowd on Christmas Eve. What helped me get through it, what allowed me to get to a place of hope for this new church and my son’s place in it? It was the reminder that our Lord and Savior was born that night, not amidst fanfare or celebration, but quietly, mildly in a manger with only shepherds and animals as his guests. In the most hopeless of places was hope for all of us born, and in the least assuming of births would all have a chance for rebirth. We were not alone, we were just new, trying to figure it out, just as we had done before, and I left the church that night with the hope that next Christmas would be a totally different experience. The light shown for us that night, the light that the darkness would not overcome.