Four challenges of leading disability ministry as a special needs parent…Shannon Dingle

When I first started serving in disability ministry, our family looked like this.

easter 2008

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.

happyeaster

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:

  1. 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.

  1. 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!)

  1. 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…

  1. 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.

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2000x770 S DINGLE CHRCH4EVCHILD 2Check 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.

About Dr. G

Dr. Stephen Grcevich serves as President and Founder of Key Ministry, a non-profit organization providing free training, consultation, resources and support to help churches serve families of children with disabilities. Dr. Grcevich is a graduate of Northeastern Ohio Medical University (NEOMED), trained in General Psychiatry at the Cleveland Clinic Foundation and in Child and Adolescent Psychiatry at University Hospitals of Cleveland/Case Western Reserve University. He is a faculty member in Child and Adolescent Psychiatry at two medical schools, leads a group practice in suburban Cleveland (Family Center by the Falls), and continues to be involved in research evaluating the safety and effectiveness of medications prescribed to children for ADHD, anxiety and depression. He is a past recipient of the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). Dr. Grcevich was recently recognized by Sharecare as one of the top ten online influencers in children’s mental health. His blog for Key Ministry, www.church4everychild.org was ranked fourth among the top 100 children's ministry blogs in 2015 by Ministry to Children.
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3 Responses to Four challenges of leading disability ministry as a special needs parent…Shannon Dingle

  1. Melissa says:

    I have never really thought of myself as a special needs parent since my son has grown-up and learned to cope with his mild disability. I recently changed my job title from working normal business hours to adult foster care parent. This means I have an adult who has autism who has been an active part of our ministry since he was 15 in my home and in my church.

    I serve on staff at our church as the Director of our Special Needs Ministry and this change has made a difference in the way i do things at our church. I have a wonderful team of volunteers who have stepped up to help him and they give me time to serve others in our ministry who need assistance. It has been a blessing to see other’s serving and to see him grow as a person. They are seeing a change in him. He used to attend church with his mother and was never allowed in the sanctuary during church. Now he stays with our class….we stay for music and then we go to Bible study after music. Sometimes the Pastor invites us to stay for the service.

    I will admit I now understand how some of the parents I have served in the past felt after their child had a bad Sunday at church. It is worse when the parent (or foster parent) is the Special Needs Director. Our church has been very supportive and they have made this easier for me.

    Like

  2. Christine says:

    I am a mom to 2 wonderful special needs boys. My husband and I have started a Special Needs Ministry for our church based on our own observations of the lack of understanding or inclusion within our church. Our intention is to make our church more welcoming to those with special needs and help everyone to see them as an important part of our ministries. However, it has been very difficult getting the ministry up and running for lack of people coming forward to volunteer to help, particularly in getting a Buddy Ministry up and running. We struggle because one of our sons is the least functioning and would benefit the most (and his teachers and classmates would greatly benefit as well) from a Buddy, but we don’t want to look like we are self-serving, so we have been trying to get Buddies for other people who would benefit. That has difficult in and of itself. I feel like you wrote out the feelings in my heart as you described the 4 challenges of having a special needs child and helping to lead a special needs ministry. Thanks so much for this wonderful post!

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  3. Mary B says:

    Excellently written, especially as a mom of two young kids with special needs. The younger hasn’t even been diagnosed yet, but I already had to back off most of my forms of service (praise team, occasionally pianist and/or worship leader) once the elder then both exited nursery. Though my husband continues service as AV tech during service, so the onus of handling their sensory responses, tantrums, anxiety, is on me. I think another component is those of us wishing to serve and called to leave are in a generation (especially females) that are finally getting diagnosed in adulthood for varying disabilities and special needs. Our kids’ medical requirements bring ours into focus (I only got diagnosed with a congenital disorder that wreaked havoc since childhood this year!) These diagnoses and health valleys don’t change our servant’s heart–but it changes how we cope. I’m very familiar with the exhaustion and guilt of not pulling others away for help–and my last thought is how to handle my own sensory overload or vocalize that I’m feeling ill in that moment that I’m serving. How do you train people to balance their own medical needs with service and with family needs during service? That’s why special needs ministry is important–those kids need to learn how to be part if a church, serve in a church, and care for themselves and each other. After all, not everyone walks in with a diagnosis from childhood–including Christian members and leadership.

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