This is a repost from https://fallensoldiersministries.com/advocating-for-special-needs-families/
During Survivor Season 48, approximately 4.5 million people watched Joe, a firefighter, console Eva, a Ph.D. student with high-functioning autism, after a game became overwhelming. Over 71,000 have watched it on YouTube. Joe knew he should respond to care for her in times she would consider stressful and did so. In fact, Joe broke tradition (or Survivor protocol) by asking the host, Jeff Probst, if he could leave his team to comfort Eva on a different team after a stressful challenge.
I’m blessed to be the dad of a Special Needs child. Scharleen is a 14-year-old girl who has cerebral palsy. She depends on us for all her care, but loves life and interacting with others. This past week, we attended an 8th Grade dance with our daughter and, unfortunately, only one child said a brief hi to her and then went to hang out with her friends. Other children slowly pulled the chairs away from the table where my wife was feeding my daughter, leaving us in the only chairs left. One friend emailed me directly and said, “Next year, Scharleen will go to her dance with an entourage!”
Most people don’t notice our beautiful girl in her wheelchair or are nervous about what questions they can (or should) ask. They wonder how they can interact with her, and with us about her. If they haven’t heard her say, “Hello, how are you?” or don’t hear her answer “cool” or “good” when they ask her how she’s doing, they don’t realize she can talk and interact. Because of this, so many miss her engaging personality and love for people. Scharleen regularly watches and listens to what’s happening around her. She notices when she’s isolated or unable to do what others can. She’ll answer “yes or no” questions, interact with people, and ask, “What are you doing?”
After reading this, you may ask a couple of questions, such as “What do Special Needs Families struggle with?” “How can I help?” or even “How can I make things easier for Special Needs Families?” I’m glad you asked those questions. Let me first start by defining Special Needs Families. It’s a family impacted by one or more members with significant disabilities or struggles. This can be parents with a special needs child, a spouse who has a debilitating medical issue, or even a family with an aging parent whom they get to provide care for–inside or outside the home. (I’ve learned much about caring for an aging parent since 2022.)
What do Special Needs Families Struggle With?
There are a few areas where Special Needs families struggle. I’d say that the most significant ones are connecting with “typical” families, taking care of basic needs when the special family member is with them, and parental time together. I’m sure there are others, but these cover many of the challenges.
Most families connect with other families through their children. Those children meet at school or play in the neighborhood. They connect, and then the families get together. When a child can’t get out to play or tell the parents who they spend time with at school, the parents don’t get to connect with those who are close to their children.
As special needs children grow, it gets harder to take care of family necessities. We can get a lot of family needs (errands, medical appointments, and the like) taken care of while Scharleen is in school (7:15 AM to 3:15 PM) but when we need to run errands while she’s with us, we have a tractor/ trailer appearance while walking through stores.
Parental time together is another challenging situation. Special needs families can feel like their lives are centered around medical appointments, medicine times, and the complications of just getting the family out the door. Sometimes, some physical aches and pains come from lifting and moving a special needs child who can bear weight but has limited motor function. For example, Scharleen can stand on her feet and bear weight, but not get herself into the standing position or balance independently. We must get her to that position and help her balance while walking. If she moves differently than expected, we can experience back, shoulder, or arm pain. Many companies make equipment that assists in her care, such as lifts, bath chairs, and wheelchair vans, which have been helpful. Respite care has been very helpful to us. It provides special needs parents time together to connect without the regular impact of caring for the special needs family member.
How Can I Help?
The easiest way to answer this question is to say “lean in.” What do I mean by that? You might remember a blind man in John 9 who had been blind from birth. The disciples–and others– were more concerned about what was wrong with him (or how they could put him in a category) than how they could be a blessing to him. Their question is, “Who sinned, this man or his parents, that he was born blind?” Jesus leaned in to both the man who was born blind and to the disciples to teach them God’s purpose in special needs.
Let’s start with how he leaned into the man born blind. Jesus intentionally sought out the blind man and served him. He restored the blind man’s sight, assisting where Christ alone could–and this man became a living object lesson for the religious leaders as he described that he was blind but now sees. His testimony continues through today, as one of the most well-known songs in the United States is “Amazing Grace.” Jesus used a physical need to address the man’s spiritual need for a savior. How are you connecting with the physical needs of special needs families to let them see who God is?
Jesus also used this opportunity to teach the disciples. The disciples were concerned about the theology of suffering: “Why do bad things happen?” Jesus pointed out that God displays His glory through people’s challenges. While I believe that refers explicitly to the fact that this blind man would be used throughout the ages in the Gospel of John, I also think this can apply to others with special needs. Scharleen trusted Christ as her savior in the spring of 2021 and has demonstrated God at work in her life. On Father’s Day 2021, I baptized Scharleen in the waters of Hickam Beach, Hawaii, because she confirmed that she was a follower of Christ and believed that Jesus died for her sins, was buried, and rose again from the dead. She expresses joy to others, connects with people when they notice her, and loves life. She reflects the glory of God through joy. Her life is hard–she looks at others who can walk, talk, interact, and do what they want to do, and she still makes others laugh with her joyful spirit.
How Can I Make Things Easier for Special Needs Families?
So, how can you help? I’d say lean in.
Invite Special Needs Families to do things with your family (meals, outings, vacations, etc.)—know there might be times when they must take time to care for their family members (helping with personal care isn’t always easy).
Find ways to be a blessing (and have your kids do the same). Scharleen had a couple of close friends her age at two different duty stations who loved and enjoyed time with her. It took a bit of nudging to help these girls realize they could be a blessing, but once they saw how they could help, they were all in: they would take her to the youth group and return her to us when she was done. They’d run with her during some of the games during youth group— they’d be elementary and junior high girls together. Scharleen notices when she’s left alone but can’t pursue friendships on her own. If there’s a way churches can find semi-inclusive youth camps (think one where a Special Needs Family Member could attend with friends, then stay with their parents), that would be a huge blessing.
Find ways to help Special Needs Families–I’m learning to ask, but even shopping trips can be challenging, as I end up with the trailer hitch between her wheelchair and a shopping cart. We have respite care, but errands can be difficult when our date nights become errand nights.
Make wheelchair spaces in your church seating areas and consider ways to make it easier for special needs families to care for special family members. Provide a space to change diapers on older children and adults, or just a space to accommodate specific needs. Create a buddy team that connects with those who have special needs–that specifically for them and assist.
Conclusion
Shelly, Scharleen, and I have been blessed with the number of people willing to help and connect with us. I’d invite you to lean into Special Needs Families.
How are you demonstrating the Gospel to Special Needs Families? I’d invite you to consider bringing special needs families in your community into your church or military chapel. Here are a few ideas:
Here are a few ideas to start:
- Establish relationships or just volunteer with community groups that care for Special needs Families: 1) Moms in Motion, 2) Joni and Friends, 3) Help, Understanding, and Group Support (HUGS), 4) Department of Defense Exceptional Family Member Program (EFMP), 5) others in your community.
- Consider how Matthew 25:37-40 looks in your life, as Jesus discusses caring for “the least of these.”
- Connect with the Fallen Soldiers Ministries Biblical Counseling, who will assist with counselors trained in the dynamics of a Special Needs Family.
- Look at opportunities to host Night to Shine Ministries through the Tim Tebow Foundation.
- If you are interested in learning more about Special Needs Ministries? Check out https://joniandfriends.org/product/start-with-hello/
Mark Worrell is an Army Chaplain who serves as the Senior Command Chaplain at Fort Eustis, VA, and the Deputy Joint Base Chaplain at Joint Base Langley-Eustis. Mark and his family have been in the Army since June 2008.