(Part Five in the series: The Biggest Struggles for Christian Parents of Children with Disabilities. Each blog post in this series stands alone well.)
This post is for: parents, caregivers, and anyone who loves and supports parents and caregivers, along with ministry leaders who care and want to serve individuals affected by disabilities and their families and caregivers.
We know that parents and caregivers of children with disabilities have many unique challenges – whether those children are still young or have grown to adulthood. Over the last few months we have been highlighting some of the biggest struggles and finding some practical and hope-filled solutions for them.
Our goal with this series is two-fold. We want parents and caregivers to know that we see you and we hear you. It is also our goal to remind and inform everyone – to give greater knowledge or understanding – to expose that these challenges are real and often difficult, confusing, agonizing, but 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/
Now to dig into the topic of this blog post.
There are many challenges that come with parenting and being a caregiver to an individual with disabilities – whether they are children or adults. In this writing, let’s focus on Social and Community Challenges. Here are some of the biggest social and community challenges with potential solutions and ideas of what to say.
Lack of Acceptance and Understanding.
Navigating the social landscape as a parent or other caregiver of an individual with disabilities can be riddled with misunderstanding and disapproval.
For example, a child who struggles with sensory issues may experience a meltdown in crowded environments, i.e. a store or even church. Some people looking on may assume this is “bad parenting” or a “spoiled” child because they do not understand tantrum versus meltdown and the true struggle the child is having.
Another example of lack of acceptance and understanding is when a parent or caregiver uses a safety harness or “leash” to keep a child safe who is prone to elope (run away) in order to escape an environment that is overwhelming for them. These parents are sometimes subject to people making snide remarks about them treating their child like an animal.
When a stranger stares or makes a comment about a meltdown or behavior, you can give the short and sweet reply: “He’s having a hard time processing the environment right now. We’ve got it under control, thanks.” You could also go the educational route and say something like: “He’s actually neurodivergent, and this is how his body handles sensory overload. It’s not a tantrum; it’s a nervous system response.”
Lack of Long-Term Compassion and Dismissal Attitudes.
Navigating the world of long-term caregiving often reveals a painful irony: while the initial diagnosis may bring a wave of community support, as the years go on these families find themselves isolated. As the newness of the situation fades, many families find themselves navigating a growing gap between their daily reality and the expectations of the world around them. This shift is often defined by a quiet withdrawal of compassion and the unintentional dismissal of their ongoing struggle. For example, when a diagnosis is new, friends and family may rally. However, five years later, when the child still cannot attend a typical birthday party, those same friends may stop inviting the family. They may be thinking, “they probably cannot come anyway”. Another example of the ebbing away of interest and support is when a parent or other caregiver expresses exhaustion and a peer dismisses it by saying, “At least he’s healthy,” or “God gives special needs kids to special people”. This totally invalidates the caregiver’s actual personal struggle.
Here are some ways that we, as caregivers, can address those dismissive comments we get: When a friend says, “At least she’s happy” or “I don’t know how you do it”, your response can redirect them to reality by saying something like, “I appreciate you looking for the silver lining, but right now I just need to acknowledge that this part is really hard. I’m not looking for a solution, just a listening ear.” Your response can also just plainly and honestly express your truth: “I do it because I have to, but it comes at a high cost to my mental health. I’d love to talk about something other than caregiving for a bit—tell me about your week.”
Judgment from other Disability Parents.
Sometimes we find ourselves surrounded by other special needs parents pushing their agendas. We finally find parents who are journeying in the world of disability and have a certain expectation that together you could ease each other’s burdens of fighting for services, inclusion, your child’s well-being, and your own validations instead of adding to the struggle.
One hurdle is the comparison trap. There are many different approaches to getting help for your child and the choices picked are personal. We all need to remember that each child is unique and each family is unique. When it comes to therapies like ABA versus what some consider holistic approaches, or medication versus natural routes, the judgment usually stems from a parent’s need to validate their own choices. One response could be, “It is good that you found something that works for you. We have found that (X) is what our child needs right now.”
Also, you do not want to fall into the trap of competing about whose level of difficulty is harder. Use language that validates. Say things like, “It sounds like we are facing different types of hurdles, but the mental load of advocating is exhausting for both of us.” Focus on the shared experience of advocacy.
Search for your tribe. That would be people who truly get your specific daily reality. It’s okay to have a smaller circle of parents who identify with each other more closely and offer authentic support to one another.
Inclusion in Church Activities.
It is incredibly draining to show up for spiritual nourishment only to be met with more “work.” As a caregiver, I am usually already running a marathon at home, so being asked to step into the children’s space at church could quite possibly send me and my family packing. We have heard this argument many times, “if I am going to be caring for my child in the children’s ministry setting when I desperately need to refill spiritually, I might as well just stay home.”
So, what can you do?
When it is suggested that you stay with your child in the children’s space at church, this is often a well-meaning but misguided response to a lack of training. You might suggest that the church recruit a “Buddy” whose only job is to sit with your child. You can offer to “train” the buddy by helping them to know a little more about your child. In some churches this is called an “Individualized Church Plan”, an “Individualized Spiritual Plan” or a “Cheat Sheet”. Some things you might include are: calming techniques that work for your child, triggers to avoid, favorite toys or activities.
Are you dealing with an individual with a sensitive sensory system? Have you felt that the main sanctuary is too loud, or the “cry room” is too small and stimulating? You just want to participate in the communal worship experience without causing distress to the sensitive one. If the sanctuary feels like a rock concert and the cry room feels like a closet, here are some ideas:
- Bring high-quality noise-canceling headphones (Loop or Bose) and/or a weighted lap pad.
- Ask if there is another space with a TV feed of the service that is set apart and quiet.
- You can suggest the church create a sensory space which might include a few or all of the following:
- a room with soft lighting,
- a bean bag chair,
- some fidgets,
- reusable sensory-friendly felt or vinyl coloring books with dry-erase markers,
- large pop-it toys, sensory bottles (filled with glitter, rice, or water).
In conclusion:
We hope that this information has been helpful to you. We know that there are many things that we have not covered in this blog post. That is due to time constraints and our attempt to try to keep the blog a reasonable length.
We also 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
