(Part Two in the series: The Biggest Struggles for Christian Parents of Children with Disabilities)
This blog post is for parents and caregivers and anyone who loves and supports parents and caregivers and whole families affected by disabilities, including ministry leaders.
Parents of children with disabilities have many unique challenges – whether those children are still young or have grown to adulthood. Over the next few months we hope to highlight some of the biggest struggles and find some practical and hope-filled solutions.
Our goal with this series is two-fold. We want parents to know that we see you and we hear you. It is also our goal to enlighten everyone – to give greater knowledge or understanding – to expose that these challenges are real and often difficult, confusing, agonizing, and also sanctifying. In all of the experiences any of us go through, God gives opportunity for them to be used for His glory and our good. We don’t begin to understand the complexity of God’s sovereign plan BUT we believe there is one and trust that our God loves His people.
We also invite interaction. If you are a parent or caregiver or a ministry leader or volunteer and you see something in this outline that you resonate with and want to share a personal insight or personal story, or need to talk it over with someone, email us at Champions4Parents@gmail.com. We would love to hear from you!
To read other posts in this series and all our other blog posts, go to https://champions4parents.com/category/blog/
SPIRITUAL AND FAITH-BASED STRUGGLES:
Questioning God’s Plan and Goodness.
First of all, let us recognize that as parents, most of us would lay down our lives for our kids. The bond runs very deep. So, when a child is born with a disability, or at whatever time a parent recognizes that a child is living with a disability, our parent-hearts are broken – not because we think any less of our child, but because we ache that they are hurting. We ache as we feel our own inability to take away our child’s pain or to make the world treat them right. The stages of grief as a parent are real and agonizing and important to address.
Before we even had Amy, I (Julie) would often make the comment, “I don’t care if the baby is a boy or a girl, as long as the baby is healthy.” This statement assumes that a healthy baby is expected.
We have come to realize that our default thinking is often that all things should go smoothly in life and if they do not that means, 1) I have done something terribly wrong, or 2) God doesn’t care about me or my loved one.
So as parents who have just been confronted with a situation where we are discovering that our child is less than healthy and in many cases physically, emotionally, and/or mentally deeply hurt, no matter what age our child is when we have that encounter, we are crushed in spirit.
Even as Christ followers, this event is rocking our world. Because we have experienced and know God in some capacity, we start to think about what we know of God’s character. Sometimes that thought process leaves us with a lot of confusion. If God is good, then why is my child suffering? How can this be a loving God’s plan? And we begin to question God’s plan and goodness.
It is important to remind ourselves that God does have a plan and that plan is holy. That plan is for His glory and for our good. We can trust Him.
Understanding God’s Will.
Difficult times are not necessarily an indication of God’s absence or displeasure. In the gospel of John, chapter 9, the man was born blind so that the works of God would be revealed in him. Our struggles and questions can be opportunities for growth and deeper trust in Him. Instead of asking “Why me?”, consider asking “What are you showing me, God, and how do you want me to respond?”
Pray. Seek the Lord while he can be found, call upon him while he is near (Isaiah 55:6). God promises that we will find Him if we seek Him with our whole heart (Jeremiah 29:13). Acknowledge your pain and ask for strength and discernment. Seek His wisdom and comfort in Scripture. Trust His promises of peace and provision (Isaiah 41:10). Remember God’s past faithfulness, praise Him for His attributes, and find strength in His love and presence. As you lean into Him, adversity may draw you closer to Him and reveal His goodness. Jesus says that in this world we will have tribulation, but to take heart, be of good cheer, He has overcome the world. We can trust a faithful and loving God.
God’s way and word is perfect (Psalm 18:30). His word is perfect (Psalm 19:7-11). Trust Him. He loves you. There is so much we can say about trusting our Heavenly Father. Please contact us for further support and encouragement.
Isolation from the Church Community.
Let’s start this section with why families affected by disabilities may feel isolated from the church community. Then, we will offer suggested solutions and action steps for both families and ministry leaders to work toward eliminating the loneliness of isolation.
- The physical component. Sometimes the church’s campus does not accommodate the physical needs of someone with a disability with things like elevators, ramps, teen and adult sized changing tables, and space in the rows of the worship center.
- Little or no support for accepting and integrating families of disability. Many times there is a lack of accommodation. That lack may show itself through not having a staff person assigned to support those with disabilities. Sometimes the lack of accommodation is found when the church has not developed a plan to specifically train volunteers. These can leave the family feeling unwanted. For this reason, many families who are affected by disabilities have left at least one church.
- Feeling like intruders or outsiders. Disability ministry in some churches is thought of as an “extra” focus or, at best, parents are getting the vibe that their kids are “charity cases” instead of integral members of the body of Christ and the local church. This can leave families feeling like they are on the “edges” of ministry and not an important part of the church.
- Traditional mindsets and misconceptions. Some church members have thoughts and attitudes that are not biblical and their words and actions can be hurtful. This can leave families feeling judged, misunderstood, and very much like a burden. One example of that is: judgment from other Christians about how we are parenting our kids when they do not understand neurodiversity.
- Too taxing. When you add the lack of physical accommodations, church staff support, and integration efforts, along with unkind attitudes and misconceptions to the already tremendous amount of physical and emotional energy it takes for a family to actually make the effort to get to church in the first place — it can be just too much. One can feel like they are pushing a heavy boulder uphill and they just may not have the capacity to fight that battle. These families often just stay home.
Action steps for churches:
Here are some actionable steps for ministry leaders (staff and volunteers) to help families of disability feel that they are an important and integral part of your church:
- Prioritize accessibility: Take the time to address physical barriers. We realize that a major renovation may not be possible right away. We encourage you to find simple, cost-effective solutions. If you need suggestions, feel free to get in touch with us.
- Champion a culture of inclusion and acceptance: Families affected by disability, like everyone else, have a great need to feel truly seen and valued. Pick a staff person or willing volunteer to be a point person for disability ministry. Be intentional about training volunteers, help them know about different disabilities, help them know communication techniques, and work on adapting lessons and activities. A little bit of training goes a long way in helping volunteers feel equipped and families feel valued. Consider putting a buddy system in place. Match up volunteers to be buddies to children who need support as they navigate the regular children’s experiences.
- Shift Mindsets: Leaders – what you believe and how you communicate – really matters. You want to keep a biblical perspective in the forefront of your communications. Every person is fearfully and wonderfully made by our Creator, in His image, and therefore is an important and integral part of the body of Christ. You can celebrate diversity as a vital and beautiful part of the church. Invite families to share their story. When others hear about the experiences and when the unique gifts and contributions that people of disability bring to the community are highlighted, they may begin to see people living with disability as full members of the body of Christ just like them.
Action steps for parents/caregivers:
Parents, here are some actionable steps you can take to…
- Seek and build community: Be proactive. You can be the one to reach out. You can break the ice. Try initiating a conversation with another parent, for example, or sign up to join a small group. Share about your family. Sometimes as parents we assume leaders know what we need. They often do not. Start a conversation with the church leaders who directly affect your family, i.e. children’s ministry director, youth director, or even request an appointment with the pastor. Kindly and clearly explain what you think may help your family. Be open to compromise. Remember ministry leaders are people like you trying to do their best. Find your people. Look for other families of disability and create a small circle of friends who “get it.”
Teaching the Disabled Child or Adult About Faith.
The Bible consistently teaches that all people are created in the image of God (Genesis 1:27) and are precious in His sight, regardless of their cognitive abilities. You may not see immediate or obvious results, but every interaction, every prayer, every shared moment of worship (however simple) is a seed planted. We don’t always understand how God works in the hearts and minds of others, and He can use even the smallest efforts to bring about understanding in His own timing and way. Ultimately, salvation is a work of God. Our responsibility is to be faithful in sharing, trusting that God will accomplish His purposes.
Finding Hope and Trust.
It’s a natural human inclination to seek hope, especially when facing the immense challenges that come with caring for a child or adult with disabilities. But as parents and caregivers, we have to ask ourselves, what are we truly putting our hope in?
Is our hope solely tethered to the idea of our child being completely healed, or at least experiencing significantly better health? While these desires are deeply understandable, placing all our hope here can lead to profound disappointment, as many conditions are chronic or progressive.
Perhaps we’re putting our hope in the abilities of doctors, educational specialists, and therapy professionals. These individuals are undoubtedly vital, and their expertise can offer incredible support and progress. However, they are still human and have limitations. Similarly, we might be putting hope in our own ability to “turn things around”—to research endlessly, advocate tirelessly, and somehow, through sheer will, change the course of things. While our dedication is crucial, it’s also important to acknowledge that some aspects are beyond our control.
What is biblical hope? It’s a confident expectation and assurance in God’s promises and His faithfulness, regardless of present circumstances. It’s an anchor for the soul, a certainty that transcends our current struggles. It’s rooted in God’s character and His redemptive plan, offering a perspective that extends beyond our immediate reality to eternity.
What are We Putting Our Trust In?
This leads us to the question of trust. What are we truly putting our trust in? Are we trusting solely in medical advancements, educational systems, or even our own resilience? While these things can be helpful, placing our ultimate trust in them can leave us feeling vulnerable and alone when they inevitably fall short or when circumstances don’t improve.
What is Biblical Trust?
Biblical trust is an active reliance and dependence on God. It’s a deep conviction that God is who He says He is, and He will do what He has promised. It involves surrendering our anxieties and fears to Him, believing that He is sovereign, good, and has our best interests at heart, even when we can’t see the full picture or understand His ways. It’s not about denying the reality of our struggles, but about choosing to lean on a higher power who is unwavering and unchanging.
Having a sense of purpose
The purpose of our loved ones with disabilities: It is not unusual for a parent to wonder about the sense of purpose for their loved one with disabilities. From a Biblical perspective, every life is divinely purposed and fearfully and wonderfully made. Psalm 139:13-14 declares, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” This truth applies to every individual, affirming their intrinsic value and God’s intentional design, regardless of physical or cognitive abilities.
As parents, caregivers, and ministry leaders, our role is to help the ones with disabilities to discover and live out their best lives. This means creating an environment where they can thrive, explore their interests, develop their strengths, and connect with their community. It involves advocating for their needs, celebrating their achievements, and fostering their independence to the fullest extent possible. It also means recognizing and nurturing the unique gifts they bring to the world, helping them to find meaningful ways to contribute and experience a fulfilling life.
Finding Your Own Worth and Purpose: In the demanding journey of caring for a loved one with disabilities, parents and caregivers and ministry leaders can sometimes lose sight of their own worth and purpose. The relentless demands of parents and caregivers can lead to feelings of isolation, exhaustion, and a diminished sense of self. For ministry leaders, the constant diligence of learning and applying the best practices for caring for those with disabilities in ministry can lead to confusion, doubt, exhaustion, and wondering if you are really making a difference. The Bible speaks powerfully to the worth and purpose of those who serve and give sacrificially (parents and ministry leaders). Galatians 6:9 encourages us: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Your tireless efforts are seen and valued.
Sandra Peoples, in her insightful book “Unexpected Blessings,” offers invaluable guidance for parents and caregivers navigating these challenges. She provides a framework for understanding and embracing the parent’s and caregiver’s own journey, helping you to:
- Let go of false beliefs that hold you back: This might include societal expectations, self-blame, or limiting thoughts about your loved one’s potential or your own.
- Work through the cycles of grief: Grieving the loss of expectations or a “typical” life is a valid and necessary process. Sandra helps you navigate these emotions constructively.
- Focus on self-care and healthy routines: Prioritizing your own well-being isn’t selfish; it’s essential for sustained caregiving. This includes physical, emotional, and spiritual health.
- Rebuild a strong faith foundation: For many, faith can be a powerful source of strength and hope during difficult times. Sandra encourages rediscovering and strengthening this foundation.
- Create support systems for yourself and others: Connecting with other parents, caregivers, and a supportive community can combat isolation and provide much-needed understanding and encouragement.
One of our favorite quotes toward the end of Sandra’s book is: “When you move past your pain and find your purpose, you stop being the victim and become an advocate. Ministry leaders, this is an excellent resource for you to share with families affected by disability in your church.
We hope that something in this writing encouraged you and helped you to know that you are not alone. We hope that you have found some spiritual truths to buoy your commitment to carry on with the tasks that God has appointed as either a parent/caregiver or a person in ministry. We pray for your strength, stamina, wisdom, and grace.
Remember that we, at Champions4Parents, are for you. If you want to brainstorm next steps or need a little extra encouragement, email us at Champions4Parents@gmail.com.
We would also love to know what resonated with you in this blog post.
Much love,
Tom and Julie Meekins
CONNECT WITH US: We are here for YOU!
We invite you to connect with Tom, Julie, and Amy through:
Email: champions4parents@gmail.com
Phone: 410-746-9010 (Voice or Text)
Facebook: facebook.com/Champions4Parents
Don’t forget our website: Champions4Parents.com
And check out Amy’s websites at
AmyChristineMeekins.com
Amystories.wixsite.com/heartrecharge
If you would like to support us financially as we provide love and support to Parents and Caregivers as well as Ministry Leaders who serve families impacted by disability, we invite you to our donor page on our website: Champions4Parents.com/giving
