This past April, I was scheduled to be one of the many presenters who would have appeared at Key Ministry’s Inclusion Fusion Live 2020. Like all of my colleagues, I was heartbroken to hear the news that we would not be hosting the conference, due to concerns from the COVID-19 pandemic. One aspect of attending the conference that I get very excited for is, of course, being able to present several workshops. One workshop in particular I get to do with my friend Sarah Broady, entitled “You Are More Than A Parent…”, which focuses on exploring all of those moments in life where you were made to feel that you were not enough of an authority regarding what is best for your own child. In a couple of other blog articles over the last year, I have written about two of those aspects, experiences in dealing with professionals in education settings, and then also in clinical/medical/therapy settings. This month, I wish to look at possibly the most difficult to consider, since it is most likely the one that you least expect to be an issue. But this issue is also one that, when it has happened to you, is maybe the most heartbreaking. I’m talking about struggles you have had working with children's or special needs ministries in a church setting.
This is a topic of much anguish and dissension, as there are many families who have had great experiences with their special needs children in their church communities, have been welcomed and accepted, included and loved, and have not had to beg for support. But there are many, especially most of you reading this now, who have had the exact opposite experience. Those who were not welcomed or accepted, those who were ostracized or shunned in your church homes, those whose special needs children were not given the support they needed, intentionally or not. Many of you have been in the role of the outcast, in a faith community where you should have been loved and treated with the love that you and your children so richly deserve. You may not have even been treated as “just a parent” like any other, you may have actually been treated as less than that, as a broken, incompetent parent who has somehow failed their child. Or worse, that you or your sin or iniquity is somehow responsible for your child’s disability.
If I or my child had experienced such treatment in those church environments that we called home for the past several years, it would be easy for me to speak to how I or my son’s mother were treated. To be perfectly honest, we have had wonderful experiences in those church communities, and our son was loved and accepted as much as we could have hoped. We were very grateful and blessed to have been one of those families who had mostly positive interactions with all those in ministry, and the various families there.
In my other examples about education and medical settings, we were forced to step out of our comfort zones and fight for our child to be respected or treated fairly. But this article is about the things we did and the steps we took to proactively make sure our son was supported. Some of these things were very simple and, at least for us, didn’t require a lot of work or preparation. Other steps went beyond what our role as parents of a special child would normally be. Overall, we made choices to engage with our churches in ways that helped build a community around our son, since we knew it would be challenging enough for him to naturally plug into the communities.
When we first arrived at our previous church almost 8 years ago, there was a retired special education teacher who worked in the children’s ministry who helped our son transition into the classroom. The former teacher also supported us in answering our questions and concerns. Our son was just turning five at the time, and due to the nature of the classroom environments at that age, he didn’t have a huge issue fitting in. Where we needed the help was with our son being able to be still and quiet his body and voice during group/lesson time. This need was easily answered by getting high school and college students to be his buddy and sit with him. Because our son was so high energy when he was younger and needed to stim often, the aides frequently brought fidgets or other toys to distract him. This is probably a pretty typical type of support in most children’s ministries with special needs kids, not to mention the default response of parents in our situation just flat out saying “get us from the service if you need any help.” Since my son still needed help toileting, we would get frequently called in, as would be standard procedure for most special needs parents there.
Where things became different for us and for him was as he moved into the elementary grade classrooms in the ministry, since the focus shifted to a more lesson-based as opposed to play-based focus. The fact that he could not sit through the Bible study or activity part of the class time was not a surprise to anyone. In fact, it was the reason that we decided to hold him back a year in the kids ministry, so he could have more time to adjust. We were allowed to do this since it made sense to the leadership there, who knew us and our child well. We had also intentionally developed relationships with the staff, and because they knew us and our child well, it became a no brainer for him to be held back.
When he did finally transition into the early elementary class, we took it a step further by offering to do a “disability awareness” talk for the students and staff that worked with him. This was an idea that we took from our experience speaking to his mainstream elementary class at his school. Since that presentation worked well with those kids, we just transferred the idea over to church. As part of this presentation, we also invited his regular school staff to come and speak to his ministry class. This was very helpful, since they could provide specific advice and techniques about what worked with him in his regular school classroom.
All of these actions were things that we didn’t need to do, and it would be easy for us to default to the expectation that the staff would just figure out how to best work with our son, and the kids should just be accepting of him regardless of his behavior. Having two parents with an education background, and for myself specifically, having worked with that particular age group for years, we knew a harsh reality: kids are kids. Regardless of the fact that they were in a church environment, and that the staff would try to support and protect him as much as they could, our son could still experience hurt words or feelings from others. Being intentional, by engaging with the students and staff, and proactively speaking on behalf of our son helped those in the classroom to be supportive of him, when normally they might not be as welcoming, or flat out hurtful.
This dynamic served us well as a family until a few years ago, when all of our son’s usual helpers moved on, due to a variety of life circumstances: going off to college, different family commitments and so forth. We then faced the very striking reality that we may need to leave one church home for another, in order that our son’s needs could be supported and cared for in the kids’ ministry. At that point, I approached my then wife with a very hard statement, “We may need to leave again.” It was extremely difficult for us to have to consider leaving the church home we loved for somewhere else, but we did it for our child, as most parents would. As we explored and interviewed different churches and kids’ ministry environments, we eventually landed at a satellite campus of a large megachurch in our area. The building was huge and modern, the ministry leaders were very welcoming and responsive, they offered to find the helpers we needed for our son. The problem was, the church was huge, much bigger than the our former smaller neighborhood church. We scratched our proverbial heads as to how to connect with the body of believers in a population that size. We initially responded in one of the more typical ways, by joining a life group, as it was an easy and simple way to connect with some other families.
That worked for a short time, but we quickly realized that it wasn’t filling us in the ways our previous life group did. We also felt a calling to be doing something more. One evening, driving home from one of the meetings, we decided that we would put ourselves out there in faith and form our own life group, but this would be specifically for special needs families. It was a hole that we felt was very needed to be filled in the church. Knowing families like ours the way that we did, we knew the specific challenges we all faced, and how we could support each other in a very intentional way.
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The idea was very welcomed by the staff and leadership at the church, and they even allowed us to do an “open house” style meeting after services one Sunday to introduce ourselves and answer any questions. In this way, we identified a need in our own lives, but being empathetic to the needs of families like ours, we found a way to step out of our role as just parents, and become ministry leaders in a sense.
The group lasted a couple of years, as long as we remained at that church, until—yet again—we needed to find another church. When our son transitioned to the middle school classroom, none of his helpers were able to come along. While we were in that church, the group and community we formed met in our home twice a month, and was a blessing to us and to those who attended. It was small; there were some who attended almost every time, and some who attended only a few sessions, but each meeting was a chance for us to connect and speak into their lives. Our short time at that church was nonetheless very meaningful, as we allowed God to work in our lives, in the lives of our child, and in the lives of those we served in our cozy small group.
THE TAKEAWAYS: The lessons we learned in all of these experiences reminded us that being a special needs parent doesn’t always mean getting served by others, but rather to know the times when you also need to give back and serve those who are most in need. Remembering the paths and journeys you have taken in your roles as parents, and understanding that “what was done for you, so do for another,” knowing that you are not helpless or powerless in this life. You are a special needs parent, brave, courageous and willing to take on all life’s challenges for the sake of your child, but you are also more than that, more than just a parent; you are an excellent example of God’s love.
Connect with John on his website: www.johnfelageller.com
