When I first started serving in disability ministry, our family looked like this.
It was 2007. Jocelyn was a baby with no known special needs. Around the same time, we began our involvement in special needs ministry. Then in 2009 Robbie would join our family by birth, also without any disability at first. Shortly thereafter, we stepped up our role, creating Access Ministry and leading it. Then Zoe came by adoption from Taiwan in 2012, with cerebral palsy and a few other diagnoses. A few months later, Robbie had his first seizure, which brought with it a label of epilepsy. In late 2013, Patience, Philip, and Patricia joined us via sibling/special needs/older child adoption from Uganda; they were 2.5, 4.5, and almost 7 at the time, and one is HIV+. We recently found out about Zoe’s little brother Sam, living in an orphanage in Taiwan, so we’re adding to our family once again (though he has no known special needs).
Here’s our family now, minus Sam.
Our passion for and calling to special needs ministry hasn’t changed. Lee and I know we are still serving exactly where we should be. But I’ve struggled this year with juggling my roles as mom to Zoe, who needs extra support at church, and as Access Ministry coordinator. Here are four challenges I’ve experienced personally or I’ve learned about from others who also wear both hats:
- It can be hard to convey that this ministry matters for the whole church.
When I was first advocating for our church’s Access Ministry, I could more easily frame this as a church-wide issue. After all, I wasn’t personally affected by disability but I was advocating for our church to fully include those who were. Now it can seem like I’m passionate about this solely because of my personal connection, which can lead others to feel like it’s not their concern if they don’t feel the same personal stake.
- Sometimes it’s easier to advocate for other kids at church than my own.
I love stepping in as the third party to help when a parent needs support in conveying their child’s needs or strengths to a Sunday school teacher or other church leader. But when it’s my kid, I’m not the third party. I’m the parent. And while I can certainly advocate for my child, I don’t get the benefit of having that third party. (That said, after realizing this challenge, I reached out to our children’s ministry staff so that one of them can fill that role when I need help. So if you’re feeling like this, please seek out someone else who can come alongside you!)
- Recruiting volunteers to serve with my kid feels self-serving.
As I planned for this year, I assigned one-on-one helpers to other kids before assigning Zoe’s. I knew Zoe was easier to include than some of the kids we serve, and I didn’t want other parents to worry that their child wasn’t going to have a buddy. The result? I covered everyone but Zoe. And then I struggled – and continue to struggle – with finding someone to pair up with Zoe because I feel like soliciting a helper for her seems more self-serving and beggar-like than it does when I’m recruiting volunteers for other children. I know this isn’t the right solution, but for now we’re bringing Zoe with us to worship during the first hour we’re at church, even though class would be more appropriate at her age, because she doesn’t have a helper and then we’re missing our Sunday school class most weeks so we can be with her during that hour. Why are we settling for that? Because…
- We’re tired.
I know we are serving exactly where God has called us, but we are weary. All parents are, but there’s a different kind of bone-weariness that is common in my conversations with other special needs parents. After fighting for our kids with insurance companies, schools, doctors, and so on, we’re worn. So when someone else joins us in advocating for our kids at church, that’s a blessing. For most special needs parents who also lead in disability ministry, we feel like we miss out on that sometimes.
So what does this mean for your church?
If the parent of a child with special needs wants to serve or lead in disability ministry at your church, don’t say no. But do ask some questions out of love, knowing that these parents willing to serve also need to be served too. Are they serving because they truly want to or because they’re afraid their child won’t be welcome at church if they aren’t leading the way? If it’s the latter, then step up to make sure those fears don’t ever come to be.
If it’s the former, though, support them as they serve. I find great joy in both my roles, disability ministry leader and special needs mama, so please don’t bar parents from serving if this is where God is leading them. (But knowing the challenges, please don’t force them to serve if that’s not the case!) If they are serving, check in with them as you would for any other volunteer – or maybe more so – to ensure that they aren’t burning out, because the risk is especially high for us.
The challenges are real, but – like any area of ministry – the rewards are too. I’m glad to be able to serve as I do, but that it isn’t hard some days to juggle special needs parenting and special needs ministry.
If you are a special needs parent who also serves in disability ministry, would you be willing to share your challenges (and joys!) in the comments? I think they can be helpful for others to read.
Check out Shannon Dingle’s blog series on adoption, disability and the church. In the series, Shannon looked at the four different kinds of special needs in adoptive and foster families and shared five ways churches can love their adoptive and foster families. Shannon’s series is a must-read for any church considering adoption or foster care initiatives. Shannon’s series is available here.