When God redeemed my worst Christmas ever by using it for good, it came as a big surprise. Most likely because 1982 was the year of my worst Christmas ever, and the using it for good part didn’t come along until December of 2024. 42 years is a long time, which...
Enjoying the holidays with a food allergy sounds like an oxymoron doesn’t it? After all, eating together is an integral component of the holiday season. I looked forward to making our traditional holiday foods until I was diagnosed with a dairy allergy in 2012. What...
November is Caregiver Awareness Month. As someone who became one of my dad’s caregivers before I started school, I grew up thinking everyone in the world was aware of caregivers and caregiving. As a young adult my husband and I cared for a son born with a...
Margaret Vasquez explained that emotions aren’t who we are. Rather, they are similar to physical sensations. When we feel something hot, cold, sharp, or painful, our bodies are alerting us to approach with caution something in our environment. When we feel emotions––big and small––our mind is alerting us to something internal that deserves our attention.
Did I trust God’s plan for the life of my child with disabilities? Did I trust God’s plan for the life of my child with disabilities during his frequent medical crises as a baby? Did I trust God’s plan for the life of my child with disabilities when he was a young adult? Do I trust his plans now?
The physical manifestations of grief in caregivers are unexpected and pervasive. Jolene Philo shares what God has been teaching her since the death of my mother on June 23, 2023.
Experiencing post-traumatic growth (PTG) while raising a child with disabilities may not be on your radar screen when you’re drowning in the stress associated with caregiving. The only growth that concerned me during our son’s medically-fragile years was increasing his strength as he fought for his life. Paying attention to the stress I was experiencing while he struggled, and possible growth coming from it, never crossed my mind. Jolene Philo writes on Post-traumatic growth for special needs parents.
Jolene Philo gives 10 vacation planning tips for families with special needs! Jolene Philo will be speaking at Disability & the Church 2024 in Orlando, FL May 1-3! Go to www.keyministry.org/datc2024 to register now.
“How do I teach my kids to interact with people who have disabilities?” Jolene Philo gives 7 tips on how to teach your kids how to interact with people who have disabilities. These tips are geared for kids, but they can be adapted for adults who act uncomfortable around anyone with disabilities and special needs––kids, adults, and senior citizens.
Jolene Philo writes on when parents of kids with disabilities get ahead of themselves, and how to take it one step at a time.
The lessons I learned while raising a child with EA/TEF have been many and varied. That’s to be expected since our son was born in 1982 with esophageal atresia (EA) and a tracheoesophageal fistula (TEF), two conditions that left him unable to swallow and required...
Raising kids with disabilities comes with its own set of challenges and reasons to be grateful. Because this is EA/TEF Awareness Month and our son was born with EA/TEF, my top ten perks of raising a child with disabilities will be slanted in that direction.
My entire life, literally since I was two years old, has revolved around caregiving. Therefore I assumed I was prepared for the challenges our family faced after my mother was diagnosed with dementia in 2008. That assumption proved correct until January of 2023 when Mom entered hospice care. Over the six months leading to her departure from this earth, advocating for her was all encompassing. I didn’t want, nor did I have time to learn hard caregiving lessons. With each passing day I became more grateful for how they drew and are still drawing me closer to God. And so, I want to share them with you.
Only when challenges slap me upside the head do I return to practicing gratitude in hard seasons. I was about to tumble into a pit of depression––a condition that has rarely reared its ugly head in my life––when God brought to mind a practice my husband and I first used decades ago while caring for our son with special needs. Every day I have been practicing daily gratitude in a hard season. Finding reasons to be thankful instead of wallowing in the hard bits took some getting used to. But eventually I got the hang of it and ended up with a long list.
Personal experience taught me that disability caregiving is a time intensive and worthy endeavor. It is emotionally intensive as well, filled with grief, fear, uncertainty, frustration, overwhelming love, and guilt. Caregiving is the hardest thing you will ever do, but it is also the best thing you’ll ever experience, the holiest act you will ever perform, the purest love you will ever demonstrate, the most Christ-like sacrifice you may ever make.
In the nearly sixty-seven years my mother and I shared on this earth, she taught me many lessons. The one I leaned on the most as our time to say good-bye drew near was this one: caregivers can do hard things.
What makes me cry as a caregiver is a list that keeps getting longer. Think of it as a reverse bucket list. But really, what makes me cry as a caregiver can be boiled down to two interconnected truths.
God has used what I have learned about and experienced with special needs and disabilities to great good. He’s empowered me to write books to encourage and equip parents, provide special needs ministry training, facilitate support groups, and more. But sometimes that same knowledge and experience results in thought patterns that lead to excessive and obsessive worry that steals my joy.
Empowering kids with disabilities isn’t always a serious business. Sometimes we get caught up in the challenges of raising a child with disabilities, and we ignore the joy. In this blog post, Jolene ends her five-part series on empowering kids with disabilities.
In part 4 of her 5-part series on empowering children with disabilities, Jolene Philo shares 4 ways to increase a child’s freedom through independence.
In part 3 of her 5-part series, Jolene addresses the need to empower our children affected by disability.
In part two of Empowering Kids with Disabilities, Jolene Philo focuses on love and belonging. What can you do or change so your children with disabilities have more opportunities to feel loved and increase their sense of belonging?
If my experience of raising a child with special needs is anything like yours, empowering my kid with disabilities rarely reached the top of my parenting priority list. In part one of this five-part series, Jolene explores how to empower kids with disabilities by using William Glasser’s Choice Theory.
Every day I see that raising a child with special needs is like writing a book. Forty years after my son’s story began—and a few days after sending that manuscript to the editor, my life parallels my son’s early days.
The question seems ludicrous, even unfeeling when I consider what my father, son, and now my mother experienced due to disability. So how is it, the day after Christmas, that I am grateful for the disabilities that continue to bring sorrow, pain, and loss to our family? Upon reflection, I see the answer in the smiles of my father, my son, and now my mother.
When the grief of caregiving pushes you to your breaking point, what can you do? Jolene Philo shares how she is learning to focus on today.
How to organically enter into life with a caregiving family has been on my mind since September when my dear Aunt Donna died. Her acts were more ordinary than flashy, they were economical rather than expensive, they were more practical than fancy, and they were more present than presents.
My pastor was introducing a new sermon series about beauty when four words took up residence in my mind: the beauty of disability. If we believe that all people are created in the image of God, that includes those with disabilities. Therefore, I believe in the beauty of disability.
What will go wrong next? This question has come up on a daily basis for my family this summer. After digging into Acts 18:21, I now see how the hardships faced by the apostles make our recent experiences seem like a walk in the park. Instead of asking “What will go wrong next?” and worrying about what was out of my control, I followed the apostle’s example, rested in the sovereignty of God
Our job as caregivers, whatever the age of those in our care, is to make them feel safe. Which is why we should ask the same question every day–How can I make you feel safe?–and observe the words and behaviors of our loved ones, so we can create the secure environment they need.
For years, my elderly mother insisted on having her window shades shut. Recently, we had her window shades open, and the improvement in her mood, and even her overall health, has been phenomenal. Here are some tips on how to harness the power of an open window for caregiving families.
God uses whatever it takes to grow our reliance on Him. He did it for Paul. He did it for my family. If you’re raising a child with disabilities and special needs, you can be sure He is using your experience to grow your reliance, too. Here are some ways He may be growing your reliance on Him.
The basics of caring for a family member in the hospital, whether a child or adult, are the same. Maybe what recently worked for my Mom can help you, too, when your loved one is hospitalized.
What caregiving is teaching me about writing fiction could fill a book. If someone had tried to tell me when I was a kid that caregiving and writing have a lot in common, I wouldn’t have believed it. Writing may or may not be part of God’s plan for your future but I know He has something in store for your future, and He’s using your life as a caregiver to prepare you for it.
Small things are saving me this winter. I created a list to remind myself that God is at work in the small things of my life.
“Have your children ever pierced your soul?” I nodded emphatically. If parenting pierced the soul of Mary, who raised a child who was fully human and fully divine, then we know that parenting will pierce our souls, too. But God has provided a means to more than make up for those painful swords.
When the unexpected becomes the norm for the caregiver, as was the case for many in 2021, it knocks us off balance. When the unexpected becomes the norm for the caregiver, the brain and body will eventually rebel. The best thing to do when your brain and body begin to protest is to ask yourself some questions.
God created humans to learn through stories. Jesus taught through parables for this very reason. When you read to your children, whatever their mix of abilities may be, and use these five read aloud tips for families, you are tapping into a highly effective, highly relational teaching tool.
I stared at the cards, more than a little ashamed by my lack of preparation for our appointment. “I know how the story starts, and I know how it’s going to end. But I have no idea about what’s happening in the middle.” But I know the One who does.
My grandson knew how to tie his shoes when he held them on his lap, but he was struggling to tie them when they were on his feet. I remember feeling a similar frustration as a young mom of a child with special needs, until I learned an important truth.
The aftermath of being gone for a long vacation was substantial. But as I reflected upon the dear friends and familiar places we visited, my perception of my present situation was changed.
What makes me cry as a caregiver is a list that keeps getting longer. Think of it as reverse bucket list. But really, what makes me cry as a caregiver can be boiled down to two interconnected truths.
Sometimes our loved ones have to be our top priority. However, as my mom demonstrated, such is not always the case. Mom’s example is why I’m taking my husband’s words seriously.
The six caregiving advocacy tips I’m learning all over again come with compliments from my mom. She’s experienced some health challenges over the past few months, so my siblings and I are advocating on her behalf. During my years as caregiver for my young son with chronic medical needs, my husband and I gradually discovered six caregiving advocacy tips that work in any caregiving situation.
If uncertainty and lack of control—whether as a caregiver or for a completely different reason—are sending you reeling, sit for a minute. Take some deep breaths and ask yourself a question.
Caregiving in a culture of outrage isn’t easy for me or for the parents I desire to encourage. These three strategies help me keep from being sucked into the swamp, and I hope they do the same for you.
I could almost hear the voice speaking into my heart. That was weird for me because I can count on one hand the number of times when God has spoken to me that manner. That simple truth—that Jesus cares about the small things—allowed me to comprehend the passage in a new light. And this new perspective can be applied to the very human endeavor of parenting children with special needs and disabilities.
One month ago today, we celebrated Christmas 2020. One month ago, the truths about Christ and Christmas buoyed our souls and carried us into the new year. These are the truths you, as a caregiver, comprehend in ways those unaccustomed to life as anything less than perfect can’t comprehend.
Gasp and sacrilege! How dare I entertain the idea of the mother of God worrying about the divine child entrusted to her care. Until I remember that, though this baby boy was fully divine and fully human, his mother was not. Instead of asking What did Mary worry about?, maybe this is what I should ask instead: What did Mary, a human mom like me and you, do with her worries?
Building a house is a slow process. But edification, building relationships, is a similar slow process. While we use lumber, nails and bricks when building a house, we build one another up word-by-word, and affirmation-by-affirmation.
This text was the first in a long thread to lighten my spirit. The thread began the day before when a couple in our church small group sent devastating news about the death of their grand-baby. We responded with pandemic-style support—text messages—and then the response from a mother in our small group who had lost a baby many years ago.
When life is not as it should be, whether the cause is a global pandemic or a child’s diagnosis, we have a choice to make. As our hearts break and our faith is tested, we have to decide to respond from either a short term or long term perspective.
Birthdays and disabilities are like cake and ice cream for my family. We can’t have one without the other. For many years I didn’t appreciate this truth. But now I do.
Writer Annie Dillard says, “How we spend our days is how we spend our lives.” Those words may sound cruel to parents caught in the chaos of caregiving. There was a time in my life when I would have hated those words. While it was true that I couldn’t decide what filled my hours and days, I could decide how to respond to the challenges our family faced.
Coronavirus grief in kids is real. While we may wish this wasn’t the case, we can do much better than merely wishing away our kids’ coronavirus grief. We can come alongside our children, and help them process the grief and mourn their losses in these six simple and profound ways.
You may be wondering what good you have to offer when your days have been devoted to caring for your child with special needs and disabilities for a long time. As it turns out, your role as a caregiver has prepared you for the COVID-19 outbreak. Here are six ways you are already prepared to spread good, not germs.
Love language hacks for the coronavirus shut down, at least from my vantage point, are an easy stretch. I know this because the hacks have already been created by parents of kids with special needs and disabilities. This post offers a few examples how to create love language hacks for your family, whether or not you are directly involved in caregiving.
The orchard was heady fare for a midwesterner eager to escape an Iowa winter for a week. I walked around in shirtsleeves and sandals, admiring trees laden with yellow and orange fruit. I breathed in the tang of fresh citrus. Even so, part of me was ready to return home and resume interviews with parents raising kids with special needs and disabilities for a book proposal about stress and compassion fatigue in caregiver. Talking to these families, on the phone or in video chats, has been as sharp and delicious as an orange eaten in a citrus grove.
In the early days of parenting our son, we couldn’t imagine having 20/20 hindsight about our child with special needs. Nearly 38 years after the birth of our beautiful baby boy, hindsight reveals how his special needs diagnosis transformed us from a young, scared, and unsure couple into braver, confident parents. Here are five of the many means God used to complete the transition.
Our first Christmas away from home was a gift wrapped in our son’s special needs. It was not the first Christmas away from home I would have chosen. But it was the gift we were given. It was and is one of the most valuable, precious gifts we have ever received. If your child’s special needs are shaping the holiday into something different than what you expected, take heart.
Instead of wracking your brain for the big things God did for you and your loved ones in the past year, make a list of small things. It took me less than 5 minutes to come up with 10 small things I’m grateful for this Thanksgiving.
I thought I’d hidden my tears. Until the woman to my left scooted a few inches away, and my husband gave my shoulder a squeeze. He knew what the woman did not. He knew the pastor had said something that touched the tender spot in my heart, the place where I long for the healthy father I never had.
While icing my injury, I had plenty of time to think and pray about how to respond rightly in the future, a luxury not often available to parents of kids with special needs. So I’m passing along what God showed me about how to respond as the light of Christ when life doesn’t go as planned.
The kindness that changed the trajectory of my life began when a mom took the time to share her story. One day, God will open doors for you to show kindness to hurting moms, too.
As I talked with my high school classmate, he recalled that the girls in our class weren’t very nice to one girl in elementary school. He recounted how the girl was ostracized for being different. I knew exactly who he was talking about, and what had happened. I took a deep breath. “I was one of the mean girls.”
In our search for ways to relieve my Mom’s loneliness, I learned four effective strategies. Their effectiveness makes me want to go back to my days as mom to a child with special needs and give them a try with him, too. Since that’s not going to happen until somebody works the kinks out of time travel, I’ll pass the caregiving lessons on to you.
Many parents dread the arrival of summer for legitimate reasons. It’s hard to navigate the tricky bits of summer, like keeping kids busy and learning. Through trial and error, I discovered a simple strategy for sprinkling pixie dust on ordinary activities to make them seem magical. All I had to do was change the name.
On the day after Easter, parents often struggle to connect the dots between serving a risen Savior and caring for kids with special needs. Because our circumstances and our reactions are similar to those of the disciples, their stories provide comfort and practical guidance for us in several ways.
He is completing His eternal purposes through each of us. God calls us to redeem the time He has given us and our children with special needs. Here are four ways to do so.
When caregiving doesn’t spark your joy, I hope these strategies help rekindle it.
Like Mary, we can nip our special needs mom worries in the bud by entrusting our children to the God who created them and by focusing on His attributes, what He has done for us, and what He has promised to do.
I understand how God came to earth as a helpless Babe, thus making Himself accessible to my three-year-old grandson. To our children with special needs. And to all who realize how much they need to have Christ, who is Christmas, inside them every single day.
This Christmas, instead of feeling guilty about our reluctance, I invite you to celebrate the One who gives us the grace we need to show up each day and love those He has put into our care. This Christmas, let’s celebrate showing up.
I pondered and prayed about what to do the next time (there surely will be a next time) the caregiving hits keep coming. Here’s what God said in response to my prayers.
Caregiving is hard, whether the caregivers are parents of children with special needs and disabilities, adults caring for aging parents, or friends who have no relatives to look after them.
What if parents who love Jesus would move from simply expecting services from educators to ministering with the educators serving their children?
The Lord was with Joseph throughout slavery, false accusations, and imprisonment. In the same way, the Lord is with you even when it doesn’t seem so.
June is PTSD Awareness Month, and though I’d rather stick my head in the sand, I’m writing this post for one overarching reason.
How can mothering happen when caregiving duties are all-consuming? Here are the 3 steps that made it happen for me.
Wherever we go and whatever we face, wherever our children go and whatever they face, however dark the circumstances, however black the evil encountered, God is with us. And He is with our children as Father, Son, and Holy Spirit.
My new grandchild’s tiny presence continually brings to mind 4 truths I wish someone had spoken into the whirlwind of our son’s special needs diagnosis in the hours after his birth.
Loneliness is rampant in our society, but whatever our circumstances, we are called to an every believer’s loneliness ministry. Here’s what that might look like.
Every day, all day, day after day, God’s enabling grace gives us the ability to do what He has called us to do.
Fretting turns to peace when we realize that God is with us in all circumstances, even when we and our children’s special needs are overwhelming.
In those moments, I realize how utterly dependent I am on others. And when I am honest enough and still enough to seek God’s voice, He uses those moments to reveal the depth of my dependence upon Him.
Singing Just As I Am reminds Jolene of how her father sat in his wheelchair and wept during the same song decades before.
Our Father uses circumstances like yours and mine to point us to His Son.
Being able to walk is a gift. Being able to read is a gift. Being able to write is a gift. I refuse to take these gifts for granted.
The blessings that happen when you choose to do more for a care giving family.
Here’s what we learned about raising a health care self-advocate during that experience and as our son entered adulthood.
When too much new sends you sprawling, reach out to the people God has placed around you.
Celebrating Mother’s Day can be hard for moms of kids with special needs. Our experience as mothers is fraught with lost dreams, unexpected challenges, and unforeseen choices. We are keenly aware of how we failed and continue to fail our children. We often wish for Mother’s Day to go away because we forget about the power of grace.
Every year as Christians prepare to celebrate the divinity of Christ revealed through his resurrection, I think of how my father and how his illness revealed Christ’s humanity poured out on my behalf.
In this cheek-by-jowl winter I’ve resurrected and implemented ten strategies I first learned when our son’s special needs felt too close and intense.
When a new year, a new house, or a new doctor can’t solve your child’s problems where should parents look? Who has overcome the world?
Like Mary and Joseph, parents of kids with special needs know much about unexpected traditions and the true meaning of Christmas.
How can we choose to be grateful while raising a child with special needs? 34 years after the fact, Jolene Philo finally has an answer.
Whether you’re a first time parent or an experienced one, whether you’re raising typical kids or children with special needs, this Parent who loved you enough to send His Son to die for our sins, is waiting to comfort, guide, and equip you as you live forever more with your heart walking around outside your body.
God has used what I have learned about and experience with special needs and disabilities to great good. He’s empowered me to write books to encourage and equip parents, to provide special needs ministry training, to facilitate support groups, and more. But sometimes that same knowledge and experience results in thought patterns that lead to excessive and obsessive worry that steals my joy.
Parents of kids with special needs deal with it every single day. Not only our children’s pain, which is what springs to mind for most moms and dads when the topic arises.
Jolene travels to minister to special-needs moms in Latvia, but will the language barrier prove to be too much?
Parents of children with special needs face the same choice every single day. Will we cling to God or will we let go?
Because the experiences were pre-verbal, he had no words to describe how he felt. But those memories were the source of his emotional and behavioral issues during adolescence.