Parents go through five phases as they raise their children with disabilities. It’s helpful for ministry leaders to understand these phases so we know better how to support families in these different seasons. In this episode, Sandra Peoples shares characteristics of the phases, the needs parents have in each one, and how the church can support them along the way.
Listen Anywhere You Find Podcasts!
Links:
Unexpected Blessings: The Joys and Possibilities of Life in a Special-Needs Family by Sandra Peoples
Rising Above Ministries for encouragement for caregiving parents and online support groups
Parenting & Disabilities: Abiding in God’s Presence by Stephanie Hubach
If you like this, you may like…
110: The Identity of a Special Needs Sibling with Elaina Marchenko
048: God’s Plan for My Family and Lifelong Ministry for the Disability Community with Garett Wall
023: Supporting Special-Needs Families with Stephanie Hubach with Sandra Peoples
Hi friends! I’m Sandra Peoples, and this is episode 114 of Key Ministry: The Podcast. I grew up with a sister with Down syndrome, and I have a son with autism. I wrote the book Unexpected Blessings to help families like mine see the joy and possibilities of life in a family impacted by disability.
Based on that book, I developed The Five Phases of Special-Needs Parenting. Parents go through five phases as they raise their children with disabilities. It’s helpful for ministry leaders to understand these phases so we know better how to support families in these different seasons. In this episode, I’m going to share with you characteristics of the phases, the needs parents have in each one, and how the church can support them along the way.
Phase 1 – Recognize Plan B
My parents first heard “Down syndrome” the day my big sister was born in 1977. As first-time parents, they found themselves in a Plan B situation they weren’t expecting when the labor pains had started the evening before.
We got my son James’s autism diagnosis after his third birthday. It wasn’t a total surprise because we had seen signs of regression since he had turned two. But there was still an adjustment when it was made official by a school psychologist, occupational therapist, and speech therapist who had only interacted with James for an hour. On diagnosis day, we walked into that school building with concerns and walked out with a label but no idea what his life would look like in the future.
But even though my sister’s Down syndrome was a surprise to my parents and James’s autism was a plan B situation for us, we soon came to realize it was still God’s Plan A. These diagnoses weren’t mistakes or accidents. They were part of God’s plan for our family.
When a family hears a diagnosis for their child, they need the support of their church—from Christ-followers who believe every person is made in the image of God, that God created each person on purpose with a plan for their lives, and that everyone has value regardless of their ability level. In those early days, after receiving a diagnosis and feeling like their lives are taking a turn they didn’t expect, parents need their church families to show up. They need an anchor to steady them when it’s all crashing down around them.
You don’t have to have all the answers (or any answers!). What’s most important is that you show up and sit with them. They need your presence and a promise that your church will keep showing up as they face an unknown future. Help them trust in God’s goodness even when what they are experiencing doesn’t feel good.
Phase 2 – Recover & Rebuild Rhythms
After James’s autism diagnosis it felt like everything changed for us. That included: our school plans, the doctors we saw, having therapists over every day, diet changes and supplements, adding safety features to our home, and relationships with family members and friends. Our church even had to change, developing accommodations for James and launching a disability ministry so families like ours would be welcome. Those changes were hard to adjust to in those early days!
When a family is adjusting to life after a diagnosis, they need help meeting practical needs as they navigate all the changes a diagnosis can bring. And for many families, they get into a new rhythm and then that rhythm changes again when a family member has a long hospital stay, a parent is out of town for the weekend, or it’s summer break for their kids who love the routine of the school year. These changes can bring a lot of stress for families. So many practical details of daily life can feel overwhelming in times of stress and transitions.
What’s important to remember as we support families in this stage is that God cares about the details of our lives and the routines in our families. One of my favorite stories of Jesus comes after His resurrection when He made breakfast for His disciples before He gave Peter the mission of feeding His sheep. I’m amazed by His care for the disciples after they had quite the Plan B experience! Even though He told them He would be killed and then be resurrected and return to them, how could they grasp what that meant? Especially on little sleep and empty stomachs. They wanted to return to what was comfortable and expected, their jobs as fishermen, but Jesus had so much more planned for them. And that plan started with breakfast. Jesus provided for their physical needs before He expected them to take the next steps with Him.
So how does a church help in this phase of recovering and rebuilding rhythms? They look to the example of Jesus who offered breakfast. They follow the pattern set by the early church in Acts and share with all in need (Acts 2:45). And they follow the admonitions from Paul in the book of Romans, “contributing to the needs of the saints, practicing hospitality” (12:13). There’s verse after verse, example after example, showing that self-care can only meet so many needs. We were created with a need for community care as well.
One way I recommend organizing the practical care these families will need is creating Family Care Plans. A family care plan is an info sheet kept by the staff to help know the family and care for their needs. You can learn more about them in episode 91.
Phase 3 – Reinforce Your Faith Foundation
Because I had grown up as a special-needs sibling, there were many things about being a special-needs mom that weren’t new to me. But one surprise was how it affected my relationship with God. I had unknowingly bought into prosperity gospel beliefs, like if I followed all the rules and made God happy, He would reward me with healthy kids and an easy life. Didn’t He owe me that much, since I already had a sister with disabilities who would someday come live with me and be my responsibility to care for?
In phase 3, special-needs parents figure out what beliefs they may have held before that aren’t actually true. Maybe it’s the idea they are being punished by God. Maybe this season reveals the idols they were putting their faith in. Maybe they had unknowingly bought into a prosperity gospel message, believing that if they did everything right, God would bless them with healthy kids and now they are rethinking everything since life didn’t go according to their plan. They have to evaluate what they believe to find out the actual truth that will be powerful enough to get them through life as caregivers. In this season, parents need three things: they need a theology of disability and suffering based on Scripture, they need grace as they rebuild their trust in God and His goodness, and they need solid, biblical resources. As we help families who are confused by what God is doing in their lives and may be asking questions they’ve never asked before, let’s remind them of what they know is true no matter how they feel.
As we help them strengthen their trust in Him, let’s do so with kindness and patience. When I’m suffering, nothing is more annoying than getting “chin up!” advice from someone who comes across as never suffering a day in their lives. What does help is compassion and empathy from those who have seen God faithful through their own struggles. Job 6:14 says, “A despairing man should receive loyalty from his friends even if he abandons the fear of the Almighty” (CSB). This loyalty can bolster and strengthen the struggling friend until they come through the fire and remember that not only were their friends standing with them, but so was their Savior.
Phase 4 – Renew Relationships
Going through stressful situations together doesn’t always bring out the best in people. But when a family reaches this phase, they learn how to strengthen the most important relationships in their lives so they can move forward together. I saw that in my family growing up as a special-needs sibling, and I see it now in my own family now. We don’t want to leave any man behind as we continue this journey.
In this phase, special-needs parents are ready to look around to see who is still standing beside them. They have the energy to invest in the relationships because they have accepted Plan B, established good routines in their homes, and have a renewed faith in God. Now they want to nurture their relationships with their spouses, typical kids, extended family members, and friends. The church has the opportunity to come alongside these families and help strengthen their relationships and support systems as they work through three needs during this phase. But there are a few possibilities to keep in mind as you help.
First, they have likely been hurt by family members or friends and need to learn to trust again. Any grief counselor will tell you that you’ll be surprised by who does show up and who doesn’t show up in hard times. I can remember exactly who surprised me by their presence and generosity in our lives (and I try to be understanding of those who pulled away or disappeared completely). Those reactions to our family influence how I make friends even now.
Second, they need support to strengthen their marriages and relationships with the typical children in their families. Most parents of a child with disabilities have seen pretty scary statistics about their increased chances of divorce. Fortunately, there hasn’t been a good study to back up these scary stats. But they can certainly feel true when parents carry a heavier stress load while many of them face being caregivers for decades to come. Parents can also feel overwhelmed by all the ways they feel like they are failing their typical kids—there’s just not enough time and energy to meet everyone’s needs, and the most important needs (like for safety) get met first, leaving little time for long conversations or fun family experiences. Churches can help families by offering respite events so parents can have a date night or recommend a trusted counselor who can help the couple strengthen their relationship.
Third, family members need opportunities to build relationships with others in similar situations. Hopefully you are encouraging parents to meet each other and providing time for them to be able to chat. That can be casual conversations in the hall before they pick up their kids from the sensory room, or it could be through a support group or a small group just for parents of kids with disabilities. The best way to know how to support parents in building these relationships is to ask what would be most helpful. And if you can’t provide the support they need, there are many online support groups that they can join and find friendship.
Phase 5 – Reach Out to Others
As a ministry leader, here’s what you need to know about parents in phase 5. They are ready to serve! When they are in a good routine at home and feel supported at church, they are ready to plug in and use their spiritual gifts to build up the body. They may also have strong opinions about your ministry. These families have been advocating for their children in schools and with medical professionals. They believe they know best. What they don’t always remember is the limitations we have at church and the goals we have that are different from other environments. We can validate their concerns and respect their advice while also reminding them of what we can offer at church. Above all, they need support to know you value them and what they offer and empowerment to do what they feel God is calling them to do. We want them to encourage others with the encouragement they have received and point people to the hope they have in Christ!
One of my favorite ways to encourage special-needs parents is to tell them they are missionaries! We know special-needs families are less likely to attend church than a typical family. But missionaries don’t wait for the lost to come to them. They are on mission wherever they go—the therapy waiting room, the support group, the hospital. The best way to grow your ministry and reach families with the message of the gospel is to empower your families to be on mission wherever they go!
I hope learning about the 5 phases has been helpful today! God is at work in the lives of special-needs families, but they often need support from their church family to recognize that work and progress through these phases. Let’s be ready to help the parents we meet at church to be part of the witnesses who find God faithful even in their unexpected circumstances.
Thanks for listening! My co hosts and I appreciate the time you spend with us each week! To make sure you don’t miss an episode, be sure to hit subscribe in the app you’re using. And we’d love for you to give us a 5 star rating to help other ministry leaders know that this would be a helpful podcast for them as well! We’re praying for you as you care for the families God has brought to your ministry!
