What if Denying Self-Care Is an Injustice to You and Your Family?

What if Denying Self-Care Is an Injustice to You and Your Family?

by | Apr 28, 2021 | Advocacy, Different Dream, Self-Care and Stress

What if Denying Self-Care Is an Injustice to You and Your Family?

What if denying self-care is an injustice to you and your family? Guest blogger Sandy Ramsey-Trayvick poses that question in today’s post. Her thought process is both convicting and empowering.

As special needs parents, many of us have advocated for our children educationally and medically to ensure the services or treatments they need to grow, heal, and thrive. 

As the mom of a son with special needs, I’ve been playing the role of advocate for over 20 years and have been pretty successful in gaining access to services my son might have otherwise not received. He, his classmates, and schoolmates have benefited because strong advocacy can affect real change. We can all attest to that.

I wonder what would happen if we advocated for ourselves as passionately as we advocate for our kids. In not doing so, how have we been deprived of the things we need to grow, heal, and thrive?

There is so much being shared about self/soul care these days.  The need for both, and ideas for how to address both, are well documented.  And yet these are still areas where special needs parents, especially moms, continue to struggle.

Why is that?  

The answer might lie in the mindset we need to adopt before we can prioritize self and soul care? Because advocacy is a response to a perceived injustice, What if denying self-care is an injustice to you and your family? With this perspective, would you then be more willing to advocate for your self and soul care?  Perhaps then we, as special needs parents, would be willing to:  

  • Look and advocate for solutions that make self-care possible.
  • Stand up against the voices that tell us we don’t need to care for our physical, spiritual and emotional health.
  • Advocate against the supermom/dad syndrome that drives so many of us to have unhealthy expectations of ourselves. Advocate for the truth that both we and our families fail to thrive when we don’t care for our own well-being.

With so many other things to do, it can often seem easier than not to let our own needs slide. In my case, the Lord Himself had to reveal that my mindset about self-care needed to change. Prior to His revelation, I’d never considered that sacrificing my own care did not line up with God’s desires for me. According to His exact words, the choices I was making to neglect consistent self-care were rooted in a disabled life mindset. He wanted me to make better choices for my well-being.

That’s so like God, isn’t it?  He doesn’t want anything to prevent us from fulfilling His good plans for our lives. He’s given us His Holy Spirit, the Advocate to help us. He’s willing to help us if we want to make better choices. But He won’t force us. So ask yourself these questions:

  • What if denying self-care is an injustice to you and your family?
  • What are some of the areas in which your self and soul could use an advocate?  
  • If you’re not sure, ask the LORD and His Advocate will guide you.

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Sandy is wife to Terry, mom to 3 young adult children, a Bible study teacher, an encourager to those who are weary, a fitness enthusiast, a lover of books, and a certified professional coach. She and her husband are also marriage mentors. Twenty years ago, after her son was diagnosed with multiple disabilities, Sandy became his full time caregiver and advocate. She knows that living in the world of special needs or disabilities can lead to a “disabled life” mindset that focuses on limitations and settles for less life, less joy, less fulfillment. She coaches parents of children with special needs to help them see their circumstances from a perspective of hope, purpose, and opportunity. She helps them choose actions that create a life for themselves and their families that is joyful, fulfilling and fruitful. You can learn more about Sandy, her work, and her blog at www.UNDisabledLIVES.org.

Author Jolene Philo

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Uncertainty and Lack of Control: What’s a Caregiver to Do?

Uncertainty and Lack of Control: What’s a Caregiver to Do?

by | Apr 26, 2021 | Different Dream, Encouragement, Self-Care and Stress

Uncertainty and Lack of Control: What’s a Caregiver to Do?

“I can’t.” I sat in my office one morning a few weeks ago and sobbed as my daughter rubbed my back. “I just can’t.”

Only one of the vehicles needed for our family of 4 adults and 2 kids was in working order.
The washing machine quit.
The drywall crew working on our 5-months-behind-schedule home addition had delivered more bad news.

“I just can’t.” I sobbed.

“You don’t have to do a thing,” my daughter reassured me.

Which was good. Because really and truly, I couldn’t. 12 months of pandemic life combined with 12 months of the addition construction encroaching further into our limited living space had reduced me to a blithering puddle of snot and tears.

“Are you feeling better?” my daughter asked an hour or so after my breakdown.

“No,” I said, “and I may never feel better again.”

“That’s okay,” she replied. “You don’t have to.”

It took me the better part of the morning to regain my equilibrium and the better part the day before I could reflect on the despair that had engulfed me. The last time I had felt so hopeless, I realized, had been almost 39 years ago when our son had been 2 months old. Though the circumstances were completely different and separated by almost 4 decades, the reasons for my despair were the same: uncertainty and lack of control.

39 years ago, my 2-month-old son and I were being flown to a hospital over 700 miles by Life Flight. He needed life-saving surgery to correct complications caused by the life-saving surgery he’d had at birth. Tears streamed down my face as I peppered the doctor on board with questions. “Why did this happen? How will they fix it? What more could go wrong?”

To read the rest of this post about uncertainty and lack of control visit Key Ministry’s blog for special needs parents.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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Grief Happens at Different Seasons of Life in Caregiving Families

Grief Happens at Different Seasons of Life in Caregiving Families

by | Apr 22, 2021 | Different Dream, Encouragement, Grief

Grief Happens at Different Seasons of Life in Caregiving Families

Grief happens at different seasons of life in caregiving families. That’s the lesson Kimberly Drew learned once again when her daughter had an unexpected grand mal seizure recently. In this post she talks about how she’s processing her emotions and adjusting to her family’s new reality.

My husband’s grandfather passed away recently at the age of 94. He was a WWII U.S. Navy veteran and had been married to his sweetheart for over 63 years. Our church provided some grief materials through Stephen’s Ministries. I received the first pamphlet recently. Our family members felt different levels of grief over his passing because he was a true family patriarch and man of God, but we also experienced a great sense of peace and hope because of how long and rich his life really was. That’s why I didn’t expect to read the pamphlet and have emotions that had nothing to do with his passing. 

You see, our daughter Abigail had a significant seizure a little over a week ago after being seizure-free for over a decade. Her previous seizure had been small, the result of weaning her off meds at the age of 8. Before that, her only seizures had occurred after her delivery. Her recent seizure was very different. What started as a cozy afternoon watching Hallmark in my bed together, turned into a 911 call and trip to the emergency room. For about a minute or so, we were truly terrified. While I am so grateful for her life and that she’s okay, her grand mal seizure took away our sense of safety and security in a matter of seconds. I found myself rereading the grief pamphlet and connecting with its Scriptures and information over that loss. I shed a lot of tears while processing it.

I have spoken to many parents of children with special needs over the years. Many of us are unaware  that what we consider to be a reaction to a hardship, trial, or caregiving duty is actually grief. The long-term care of a disabled loved one means that grief happens at different seasons of life, for example, during a medical crisis, physical changes, or losses. Grief has stages and being able to recognize them not only helps us heal, but also helps those around us understand what we are dealing with. 

My daughter’s seizure was unexpected, sudden, and traumatic, I have been walking around in shock since it happened. Emotionally, it brought me back to Abbey’s traumatic birth and the seizures that followed her delivery. I don’t like to visit that memory. The shock will pass, and in future I will have other phases of grief to process. But, I do not go through them alone. 

I often read Psalm 139, which speaks truth about many areas of life and to the grief that happens at different seasons of life. I am particularly drawn to verses 7 through 10 now and hope you will be encouraged to read it. Let these word from the Lord wash over you, and comfort you in your own stages of grief. 

“Where can I go from your Spirit?
    Where can I flee from your presence?
If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there.
 If I rise on the wings of the dawn,
    if I settle on the far side of the sea,
 even there your hand will guide me,
    your right hand will hold me fast.”

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have three amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s  desire to write. In addition to being a stay at home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

Author Jolene Philo

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Aligning Priorities as Caregiving Demands Change

Aligning Priorities as Caregiving Demands Change

by | Apr 15, 2021 | Different Dream, How-Tos, Self-Care and Stress

Aligning Priorities as Caregiving Demands Change

Aligning priorities as caregiving demands change became part of my world in February. That’s when the residential facility where my mother lives reinstated room visits. Wahoo!

After a year of staying home all day every day, I dedicated a half day a week to running errands for and visiting Mom. Since then her health has slowly declined and the visits have become more frequent. She’s 92, and I think the trend’s going to continue. 

What I’ve discovered in the past few months is this: the process of aligning priorities as caregiving demands change is almost identical for parents of kids with disabilities and adult children caring for elderly parents. 

It’s a daily reality.
It’s a continual process.
It’s a schedule buster.
It’s a flexibility booster.
It’s a character builder.
It’s a daily exercise of grace toward the loved ones we care for and for ourselves.

As a caregiver, you know what I’m talking about. Here’s how aligning priorities as caregiving demands change have impacted my life lately:

  • Culver runs. Mom loves Heath concrete mixers made with their frozen vanilla custard so I schedule enough time to pick one up before visits. 
  • Amazon search. Tooth brushing is hard for Mom, so I ordered her some kidney-shaped basins (also known as emesis basins) used by hospitals. That way the workers at her care center can bring the basin, her toothbrush, and a glass of water to her while she’s sitting in her easy chair. Me too, after she finishes her Culver’s ice cream.
  • Asking for help. For example, when scheduling group Zoom meetings, I ask for a volunteer who can lead the meeting in my absence if something comes up for Mom. Knowing that the show can go on without me brings great peace of mind and gives someone else a chance to gain skills.
  • Saying no. I belong to several committees and planning boards that advocate for people with disabilities. Normally, I volunteer to do my share of the work. This spring I’m saying no because other committee members can do that work in this season when only my siblings and I can provide what Mom needs.
  • Hiring another VA. My current part time VA, who keeps the Different Dream website bright and shiny, is amazing and wonderful. She recently took a full time job and doesn’t have time to assist with social media posting and some website cleanup. So I hired a second part time VA who is being trained by the other one. Now there are 2 people who know the ins and outs of Different Different. More peace of mind. Ahhh!
  • Expanding childhood trauma education.  Because I’ve scaled back in other areas, this has become a priority, second only to Mom’s needs as the pandemic has increased interest in and requests for childhood trauma training. A small college asked me to develop a class for their online master’s in education program. My virtual online classes for educators scheduled for June are already full. Schools are booking inservice trainings for next year. My siblings and I are good at tag teaming when one of us has an unbreakable work commitment. Again, great peace of mind.
  • Fewer Different Dream posts. Because of changing priorities and because the website has a huge stock of exceptional content, the website is now posting only 1 or 2 posts a week. Some are from me and some are from guest bloggers. 

Are you in a season ofaligning priorities as caregiving demands change for your child or elderly loved one? What do your new priorities? How did you determine them? If you would like to write a guest post about your experience with changing priorities  (or any other caregiving topic), you’re invited to check out the guest blogger guidelines and learn how to contact Different Dream here. I’d love to hear from you!

 Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

Author Jolene Philo

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Learning to Embrace a Special Life

Learning to Embrace a Special Life

by | Apr 13, 2021 | Different Dream, Grief, Spiritual Support, Uncategorized

Learning to Embrace a Special Life

Learning to embrace a special life as the parent of a child with a disability is a journey. New guest blogger, Kristin Faith Evans, describes the spiritual crisis that brought her to acceptance and shares 4 practices that bring her joy and peace.

Beginning My Unexpected Journey

As long as I could remember, I had believed in God and trusted Him. Nothing could shake my faith—or so I believed. We thought we had it all. My husband, Todd, was in his third year of serving as the Director of Youth Ministries, our son’s health and developmental progress were stabilizing with his extremely rare genetic disorder, and we had just discovered that I was pregnant with our second child. We felt so blessed by God. Then, I would begin a journey that took me through a nightmare pregnancy and delivery; learning that our daughter, Bethany Grace, had sporadically developed a more-severe genetic disorder called Cri du Chat Syndrome; three months in the NICU; the continual battle to save both of our children’s lives; then my dark crisis of faith and long war with severe depression and anxiety.

Obsessing with Finding Answers

Shortly after Bethany Grace’s homecoming from the NICU, I become overwhelmed by the stress, anxiety, grief, and guilt. I spiraled into a deep pit of depression and began to walk through a dark, terrifying wilderness of spiritual anguish. Doubt. Anger. Disillusionment. My life-long faith that I had naively believed was unshakable had easily shattered. I was desperate to understand and find answers that made sense to me. How could God be sovereign and benevolent, and at the same time allow my daughter and son to suffer like this? Why is he letting all this happen to our family?

The more I questioned, the further I distanced myself from God, and the more powerful the grip of depression grew. “But I trust in you, O Lord; I say, ‘You are my God’” (Psalms 31:14, ESV). I could no longer bring myself to utter this prayer. I found myself not even wanting to go to church anymore.

Discovering What Faith Is to Me

Sitting on my therapist’s couch, her questions helped me realize that I had a choice to make. I could continue to fight reality and be angry with God, trudging on through each day miserable; or I could release the need to find answers or understand. Two days later, I found myself hiking through the woods where I came upon a shimmering lake. The colors reflecting off the boulders created a magnificent scene. How could God create something so good and beautiful but allow darkness and pain? Then it hit me—Is this what faith is? I don’t understand how God could be good and have allowed our family to endure all of this suffering, but I let go of the need to know. I embrace the mystery of faith. “I trust you, God.” I finally began to understand and discover deep meaning and purpose in my life. I began Learning to embrace a special life, to be free to sing a new and joyful song throughout my days. Now, I am not saying that when I grew in my trust in God that my depression resolved on its own. I still had to work very hard in therapy. But letting go of the need for answers freed my soul and lightened my heart which helped me in my recovery from depression. I also began to depend on God on my journey to wholeness and healing.

So, how does learning to embrace a special life cultivate joy each day?

I have found that sometimes experiencing joy takes making a choice, despite how difficult and painful my circumstances are that day. These four practices have helped me live in a more joyful mood throughout most days:

  1. Living in gratitude for each new day (even if I can only find one thing to be thankful for)
  2. Trusting God’s good promises to me in Scripture
  3. Remembering all the times that God has helped my family and blessed us
  4. Fully enjoying the little moments

I hope that you, too, are learning to embrace a special life in deeper ways and find joy on your unique journey.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. As an author and mental health therapist, her greatest passion is walking with others on their journey to deeper emotional, psychological, and spiritual wholeness. As both her children have rare genetic disorders, Kristin especially loves supporting other parents of children with special needs. She hopes that you may find encouragement and support through her two websites and blogs, www.KristinFaithEvans.com and www.SpecialNeedsMomsBlog.com.

Author Jolene Philo

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Working Together Wins at Church

Working Together Wins at Church

by | Apr 7, 2021 | Different Dream, Special Needs Ministry

Working Together Wins at Church

Working together wins because it makes us stronger, better, successful, and more focused than when we work apart. This is true when families, children’s and youth workers, and those who work with children and young people with special needs or disabilities. Here are some examples of how working together wins.

Supporting children makes us stronger at supporting everyone

Strategies that support those with special needs and disabilities are beneficial to the wider congregation. Support can look like :

  • Learning some sign language.
  • Using a range of sensory teaching techniques to keep children’s focus and attention.
  • Providing buddies for children who need someone to assist them.
  • Thinking carefully about what we say. For example, instead of saying “Let’s stand to sing!” say, ““We’re going to sing now; let’s sit, stand or even dance, as you feel comfortable. God really doesn’t mind!”)

Collaborating makes for better transitions

Child with special needs (and their families) may find it difficult to move up from one age group to the next, especially when they move from the children’s programming to the youth group. Leaders can make the transitions easier by collaborating on a gradual transition instead of parachuting kids in on one Sunday and hoping for the best.

For example, bring a child with special needs into the older group for a short visit to the older group. Increase the length of the visits over the course of several weeks until kids are fully transitioned. This coordination results in the minimum of stress and anxiety for the children, their families, and program teams. 

Pairing older church members with kids makes successful buddies

Many children with special needs or disabilities benefit from having a one-to-one buddy who offers support at church. The role of a buddy requires empathy, love and understanding, as well as good old-fashioned common sense. Older church members are often a perfect fit for the role. They might not see themselves leading games, songs, activities and talks, but they may appreciate the role of caring for a child or young person. Many children respond well to the grandparent generation. Forming a close and meaningful bond benefits both the adult and the child. 

Teaching church-wide focus lets everyone learn together
If the vision, mission, and teaching of the church is shared in all areas of church ministry, the themes will more likely be absorbed by everyone in the family. When parents pick up their children, leaders can send notes about what was explored. Parents will see that the adult teaching was similar, so they can work through this further with their children.

Working together wins at so many levels. It makes sense for everyone and offers significant benefits for young people with special needs and disabilities and their families. It begs the question: Why not try it when we know that working together wins?

Image ©Urban Saints, used with permission.

 Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

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