Mother’s Day Grace for Moms of Kids with Special Needs

Mother’s Day Grace for Moms of Kids with Special Needs

Mother’s Day Grace for Moms of Kids with Special Needs

A few weeks ago, I woke up crying after an early morning dream. My pillow was wet with tears, and the vivid accusations hurled during the dream—or should I say nightmare?—haunted my day.

Why didn’t you stand up to the doctors?
Why didn’t you ask more questions?
Why didn’t you shield your baby from pain?
Why didn’t you do more?
Why didn’t you?
Why didn’t you?
Why didn’t you?

For two days, I couldn’t escape the memory of the dream. I wondered at its vehemence 35 years after the arrival of our son, his first surgery the day he was born, and his NICU stay. I was shaken and shamed by my inadequacy as a mother. Suddenly, every wrong decision and poor parenting choice I made during my son’s childhood came to mind. Then I looked at the calendar and saw that Mother’s Day was only a few weeks away. Why would my son call or send a card to a mother who couldn’t give him what he needed most at birth?

A mother who wasn’t with him on the flight to the hospital?
A mother who didn’t protect him from excruciating pain?
I wanted to crawl into a hole.

Instead, I thought of the last time my mother stayed overnight at our house before entering a nursing home. She needed me to help her get on and off the toilet, to get in and out of the shower, to dress in the morning and undress at night.

To read the rest of this post visit Key Ministry’s blog for parents of kids with special needs.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.

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A Child With Special Needs Is More Than Numbers

A Child With Special Needs Is More Than Numbers

A Child With Special Needs Is More Than Numbers

A child with special needs is more than numbers. You know that, I know that, and as guest blogger Kimberly Drew reminds us, God knew that when he knit our babies together in the womb. She encourages parents to look beyond test results and to reinforce the fact that every child with special needs is more than numbers. We are all more than the sum of our parts.

A Child with Special Needs Is More Than Numbers

Life begins with numbers.
Nine months.
Centimeters dilated.
Hours of labor.

But it doesn’t stop there. Everything is measured in numbers.

Baby’s weight and length.
Head circumference.
Apgar score.
Breathing rate.
Ounces per feeding.
Diapers a day.

Numbers, numbers, numbers. You come home from the hospital and count the hours between feedings, the hours you get to sleep, and before long you count the weeks it took to see your baby smile. For parents of neuro-typical children the numbers start to spread out into months.

Clothing by month.
Age by month.
Milestones by month.

But for parents of children with special needs, the numbers can take a different turn and exact an emotional toll. For instance, when your preemie baby doesn’t look her age and every stranger who stops to talk to you requires a “disclaimer” about her size. For parents of children with physical and mental disabilities the charts, measuring, and numerical markers aren’t fun.

We had an eligibility evaluation for our youngest who was adopted with special needs. For an hour and a half the test administrator examined everything from how she responds to a voice to how she tries to use her pointer finger. All the while, the test administrator recorded results in her computer. At the end of the test, scores came out.

A typical child’s score is zero.
An advanced child’s is a positive number.
A child with delays has a negative score.

The negative section is even divided into sections. Some negatives are okay…some are really bad. Our daughter was in the “really bad” section, color-coded in red. Just in case we weren’t concerned about her development already, the RED WARNING color made it more apparent that she is severely behind.

Because we have a fifteen-year-old with disabilities, I know this is just the beginning of the scales and charts that we will talk about with a team of people. Her milestones will be measured in the “minis.”

She’s not sitting up, but she raises her arms 25% of the time to reach for me.
One of our older daughter’s goals is to stand up without assistance 3 out of 4 times.

Our daughters’ worlds literally and figuratively revolves around numbers. As parents of a child with special needs, we can start to drown in them. The negative reds can upset us if we let them. It’s important for me, for all of us, to keep these numbers in perspective. When we feel like we’re getting lost in them,  we need to remember that the God who determines the number of stars and names them all, also knows the number of hairs on my daughters’ heads because they matter that much to him. (Psalm 147:4, Matt. 10:30)

We should remember that the world looks at the outward appearance, but the Lord looks at the heart. (1 Sam. 16:7) He does not measure the same way that the world does. My girls are not a number to him, they are not a chart or a growth curve. Neither are your children!

When you are drowning in the numbers, find rest and peace in Psalm 139: 13–18, paying special attention to the numbers in verses 17 and 18.

13 For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you, when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.”

Your Thoughts?

How do you define your child with special needs with more than numbers? Share your insights in the comment box!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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 four 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.

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Be Still and Know

Be Still and Know

Be Still and Know

Be still and know that I am God.
Psalm 46:10

Two weeks after moving to our new house, we were still getting acquainted with the place. “Where does this go?” Hiram queried at least once a day while putting away dishes in the kitchen. “Which way to the bathroom?” I wondered before answering my middle of the night call of nature. But day by day, the floor plan became more familiar and the contents of cupboards and closets made more sense. Every morning our house felt more like home as I settled into my comfy chair and study our pastor’s upcoming sermon text from John 1.

I suspect God is using our move to reveal truths from the first book of John that I’ve never noticed before. For some reason, the passage where Nathanial encounters Jesus makes me shiver with a delight that reaches to my very soul.

“How do you know me?” Nathaniel asks Jesus when they first meet. When Nathaniel learns that Jesus knew he’d been hanging out under a fig tree, he blurts out the truth he just realized. “Rabbi, you are the Son of God! You are the King of Israel!” To which Jesus replies, “You ain’t seen nothing yet! Stick with me, and you’ll see heaven opened, and God’s angels ascending and descending on the Son of Man.”

About now, you’re probably scratching your head and wondering, “What’s so delightful about that?” The delight flows from how Nathaniel’s exchange with Jesus reveals a basic truth about every believer’s relationship with him. While we are becoming acquainted with Jesus, he already knows everything about us and our children–more than we can ever hope to know about ourselves.

I see my own human frailty and self-absorption in this truth of Scripture. My perception is that I magnanimously allowed Jesus into my life at salvation, when in reality, he was already there. He’s always been there waiting for me to become aware of his presence. Waiting for me to engage in his relationship with me that is not about him making my acquaintance. It’s about him revealing who he is so that every day I can know him more intimately.

This relationship is available to all believers, an everlasting relationship that begins with salvation but doesn’t end with this life. Instead it continues in the life to come. In this world and the next, Jesus constantly reveals more about himself. Though he has known us completely since before time began, our knowledge of him will never stop growing. Throughout eternity, as Jesus shows us more of his character, those who love him will see the angels descending and ascending on him, and we will respond with shivers of delight, “You are the Son of God! You are the King of Israel!”

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.

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Where Special Needs and Easter Meet

Where Special Needs and Easter Meet

Where Special Needs and Easter Meet

Where Special Needs and Easter Meet

Some of my earliest memories are anchored in the sensations that accompanied our family’s Easter observances. Scratchy petticoats under new spring dresses. Bonnet straps tied too tight under the chin. The tickling ruffles of white anklets and toes crammed into shiny new Mary Janes. The smell of ammonia rising from Dad’s urinal zipped into the black leather bag tucked under the pew. Dad, not sitting beside his family, but behind us in his wheelchair.

I would steal looks at Dad during the sermons. More than 50 years later, I can close my eyes and see his expression as he listened to the pastor. That memory brings me to tears–and yes, I am crying while writing these words–because his expression is not joyful or hopeful. It is resigned. It is sad. Even sorrowful.

After the service, his expression always changed. Eyes twinkling, Dad would position his wheelchair in the middle of things. He greeted every person who passed by, shaking hands, sharing stories, wishing them a happy Easter, refusing to leave until the crowd dispersed, and Mom was fretting about the ham burning in the oven. Dad’s good mood lasted through Easter dinner with our relatives, the egg hunt with our cousins, and the card games that followed. But after the company left and Mom shooed us to bed, the sadness and resignation settled around my father once again.

When I was a little older, we attended Maundy Thursday services, and I sat up straight when the pastor read from Isaiah 53.

To read the rest of this post about where special needs and Easter meet, visit Key Ministry’s blog for special needs families.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.

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6 Special Needs Caregiving Lessons from my Father

6 Special Needs Caregiving Lessons from my Father

6 Special Needs Caregiving Lessons from my Father

 Front row: Me (age 7), my father (35), and brother (5) Back Row: My paternal grandfather (66), sister (10), and mom (35) in 1963

Special needs caregiving has always been part of my family’s life. Guided by our determined and capable mother, we cared for Dad in our home for over 2 decades after he was diagnosed with multiple sclerosis in 1959. When he moved to a nursing home in the early 80s, Mom fed him supper every night. We brought his grandchildren to visit as often as possible. My father, once a gregarious and outgoing man, quickly lost the ability to walk. By the time he died in 1997, Dad couldn’t talk and required total care. Even so, he passed along some special needs caregiving lessons I treasure. This month, in honor of the 20th anniversary of his passing from this life to the next, here is the caregiving wisdom I gleaned from him.

Lesson #1: Don’t Waste Your Health

Good health is a gift from God. We are called to steward our health by eating healthy food and getting enough sleep and exercise. We are also called to use the gift of good health to make this world a better place. When I’m tempted to sit by the pool and eat bonbons, the image of my father laying in his nursing home bed for 14 years compels me to get up and get busy.

Lesson #2: Children Add Sparkle to Life

Whether my siblings and I brought friends home to play after school, or years later, when his grandchildren visited him in the nursing home, children brought sparkle to Dad’s life. We can bring sparkle too, by inviting children into our homes to visit the loved ones in our care.

Lesson #3: People Matter

My dad was well-known in our community before his illness. Many friends, family, and people from our church family visited him faithfully for years. He welcomed every visitor (and unsuspecting strangers) with love and gusto. His response said that people matter not because of what they do, but because they are.

Lesson #4: Presence Is Important

My dad couldn’t get out and about for the last two decades of his life. As his speech failed, he couldn’t contribute to conversation either. Even so, several faithful men continued to visit. Sometimes, they would sit beside his bed and reminisce or talk about current events, as Dad gazed at them and grinned. Sometimes, they would sit quietly and return Dad’s smile. Even when loved ones can’t talk, the presence of others is a gift we can encourage others to share with them.

Lesson #5: A Smile Speaks Volumes

My memories of of conversations with Dad are growing increasingly dim. But his smile–all I have to do is close my eyes and there it is–an indelible memory to cherish. If his smile holds such power in my memory, did my smile do the same for him? Can the smiles of caregivers carry a similar impact? Just the possibility that it might have such power is reason enough to smile at loved ones often!

Lesson #6: Love Endures

Through our parents, my siblings and I experienced the beauty and pain of enduring, selfless love. My mother loved and cared for Dad for 38 years. Those years were hard, selfless, exhausting, and rewarding. To the end of his days, Dad’s face lit up when Mom walked in the room. He couldn’t remember his children or friends, but he knew and loved his wife. When I contemplate the love of Christ for those He calls His own, I thank God for my parents. Because of them, I know what it is to fully love Christ my caregiver who loves and cares for all His children.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.

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The Special Needs Juggling Act

The Special Needs Juggling Act

The Special Needs Juggling Act

The special needs juggling act many parents struggle to maintain is a lot like moving. I discovered truth last month when we moved for the first time in 26 years. After dropping the ball numerous times, I was certain I wasn’t good enough. But Philippians 1:6 reminded me that I don’t have to be good enough because He is.

For I am confident of this very thing,
that He who began a good work in you
will perfect it until the day of Christ Jesus.
Philippians 1:6

The past few months have been a juggling act, and I’ve dropped more than a few balls. The first drop came to light when my husband balanced the checkbook and discovered several withdrawals I’d forgotten to record. The second landed repeatedly on my virtual assistant who has responded to queries of the “Was I supposed to take care of that?” nature by patiently reiterating what I’d promised to do earlier. But the worst drop came at Christmas when I purchased the wrong Brio train accessory for our 4-year-old grandson to unwrap. An epic grammy fail if there ever was one.

This juggling act won’t end any time soon. Thanks to our upcoming move, none of my tricks that keep life moving along smoothly are working. I make to do lists in my planner, and a new wrinkle appears that annihilates the to do list. Or I can’t find the planner because its usual place has disappeared. Or I eventually find the planner only to discover all the pencils are packed away.

Some days the enormity of what remains to be done, despite what’s already been accomplished thanks to generous portions of God’s grace, feels overwhelming. My heart recoils each time a ball gets dropped, an invitation must be turned down, or a grandchild is disappointed. You aren’t good enough, my inner perfectionist whispers. You will never be good enough.

Those words carry truth that threaten to destroy me. But according to scripture, those words are not the whole truth. The whole truth is that God doesn’t expect me or any other person to be good enough to complete a solo juggling act. The whole truth is that God designed us with imperfections so that we will call out to him when life is too big and too much to handle alone. Which, in my experience, is pretty much all the time. Maybe it is for you, too.

The God who designed us to need him at all times provides further truth to banish the crafty inner perfectionists who mess with our heads. The God who began a good work in me, our Father instructs each of us to say when the whisperer of half-truths invades our thoughts, will be faithful to perfect it until the day of Christ Jesus.

The whole truth is that we don’t have to be good enough because God’s promises are enough, and his word is sure. When we can’t do enough or be enough, despite our best efforts and dogged obedience, God is enough. When the ground around us is littered with balls we have dropped, God is enough. When we are not enough, we can boast in our weaknesses because the power of God dwells in us and promises to complete the good work he began in us. He’s the God we can trust to keep that promise because his goodness and his grace are ever and always more than enough.

How Do You Handle the Special Needs Juggling Act?

Where do you find reassurance when you don’t feel up to the special needs juggling act? Leave a comment to encourage us all!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly 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.

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