Special Needs Parenting Offers Life…Not a Wasteland

Special Needs Parenting Offers Life…Not a Wasteland

Special Needs Parenting Offers Life…Not a Wasteland

Who knows how special needs mom and guest blogger Kimberly Drew finds time to read? But I’m glad she does, because one book she read gave her hope and encouragement she’s sharing at DifferentDream.com today.

New Life in the Wasteland

I recently read a novel written by my friend Jocelyn Green titled Widow of Gettysburg. It is a historical fiction novel and I loved it. There were several quotes throughout the book that grabbed my attention, but this one in particular has been running through my mind today:

Where we think there is a wasteland, God will bring new life.

A Special Needs Wasteland

As the parent of a child with multiple handicaps, there have been seasons of my life where I felt like I was living in, and surrounded by a wasteland. Doctor’s appointments, therapies, insurance battles, isolation, grief, and fear sucked every last bit of energy from my spirit. I was recalling with my mother-in-law just this morning that during the early years of Abbey’s diagnosis, I felt like I would never get out of the emotional wasteland I was living in.  I couldn’t see relief in the future, I couldn’t feel God’s presence (even though it was always there), and uncertainty seemed to be overwhelming my ability to grasp and deal with our situation.

Special Needs and New Life

Perhaps while you’re reading this, you can relate to one or all of those feelings. I want to encourage you to never forget that God is in the business of making all things beautiful in His time. If you had told me eleven years ago that there would come a time in my life that I would thank God for allowing Abbey to become disabled, I never would have believed you. I barely believe it now! But it’s true. Somewhere deep in my heart, God has tenderly spoken kindness and mercy over my pain. Where there once was a wasteland of isolation, now there are new and invaluable relationships. Where fear of the unknown robbed my joy, my trust and faith in His plan allows me to laugh freely and often as a part of my day. The horizon of my heart was once a barren and empty black hole of grief, and today it is so very full of the lessons I’ve learned about God’s character and compassion for me.

Special Needs Hope

Isn’t it amazing that while I was looking around and feeling and finding nothing, deep underneath the layers of my heart God was planting something new? There beneath the cracks in my faith, a tiny seed of hope was growing. This seed needed deep roots to withstand its environment.  Out of the wasteland, God brought new life. This life is more transparent, vulnerable, and authentic than it ever could have been if someone had planted it in the lush and fertile soil of ease.

What Books Speak to Your Special Needs Parenting Heart?

Have you read a book that planted a seed of hope in your role as the parent of a child with special needs? Or gave hope for your child? Tell a little about the book in the comment box. Maybe we can start a special needs parenting book club…with Kimberly as our leader, of course!

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 both in the upper right column on 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.

Author Jolene Philo

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Special Needs Parenting and Marriage

Special Needs Parenting and Marriage

Special Needs Parenting and Marriage

Special needs parenting can be hard on a marriage. Today, guest blogger Amy Stout shares a lesson she learned from the movie The Princess Bride about how to keep marriage strong.

As You Wish

Proverbs 15:1
A gentle answer turns away wrath…

I once had a grown-up temper tantrum—rather, a series of them. I wasn’t proud of my behavior, but I couldn’t seem to rein in all the emotions that were battling for victory during an incredibly stressful time. We were in the midst of making decisions regarding medical treatment for our daughter who experiences special needs.

In a moment of utter weakness, I just exploded on my soulmate. I knew he would be a “safe place” because of his great love for me. While I felt some relief at all the pressure being released, I felt terrible about my behavior and, in the strangest of moments, recalled one of our date nights from the past…

***

The setting of the movie my husband had chosen was a picturesque countryside with a charming cottage on a simple farm. The young heroine was strikingly beautiful despite her plain, drab dresses. Her golden hair, straight and unadorned, caressed the roughness of the fabric that was privileged to embellish her loveliness. Her situation in life was clearly beneath her and it seemed terribly unfair.

I sat next to my husband, his hand in mine, and I admired her grace and exquisiteness.

Until… I heard her speak.

With her words, she harassed and abused a young farm hand, a boy about her age. He was a worker at her beck and call—a boy who seemed to genuinely enjoy his job of serving her, of meeting her every need no matter how silly her demand, how trivial the request, or how rudely it was delivered. She further took advantage of his kindness and devotion by refusing to address him by name. Instead, she chose to insult him by labeling him Farm Boy.

It wasn’t long before this young man made an impression on me and, as it turns out, on her. After every offensive and unrealistic demand, he would softly and quietly respond “As you wish.”

It seemed to frustrate her that he never responded in anger, or refused to fulfill his commitment to her and she continued to press him relentlessly until one day his gentle and unyielding devotion won her affection and love for him. Westley, the farm hand, won the heart of Buttercup, the beautiful maiden, with three simple words delivered with grace, gentleness, and humility.

As. You. Wish.

Buttercup eventually became The Princess Bride to her beloved Westley and they lived Happily Ever After.

***

I have carried those scenes from the movie in my heart and mind for a very long time. Westley’s response to Buttercup is the most romantic thing I can imagine. To have someone love you at your absolute worst is every girl’s dream!

While Buttercup’s behavior and rudeness appalls me, I am ashamed to admit that, at times, her words have been mine. I cringe to realize how unlovely I have sounded to my husband, the one who is devoted to me and whom I love more than life itself—ugh!

On one occasion, when I spouted an order to my husband, he quietly but sweetly responded: “As you wish.” Thank goodness for gentle reminders of more loving ways to respond toward those we cherish.

Fellow wives (and stressed out mommies of children who experience special needs), I encourage you to demonstrate an as you wish heart. When you do, your husband will respond in pure, adoring, devotion.

***

Dear Lord, Sometimes our words and our responses are hurtful and careless.
Will you give us the courage to respond to you and those we love with an “as you wish” heart?
Please, bless our vulnerability and our humility with loving relationships that honor you.

What Do You Wish?

What do you wish for your marriage? How could Amy’s advice help make the combination of special needs parenting and marriage work? Leave a comment.

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 both in the upper right column on this page.

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Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

Author Jolene Philo

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Post-Traumatic Stress Disorder and Sleeping Babies

Post-Traumatic Stress Disorder and Sleeping Babies

Post-Traumatic Stress Disorder and Sleeping Babies

Post-traumatic stress disorder and sleeping babies. What could they possibly have in common? A study conducted by researchers at the University of Oregon about what sleeping babies hear found a possible link. Or maybe it’s more accurate to say they discovered a link in a chain that could partially explain why some children we think haven’t experienced trauma develop post-traumatic stress disorder.

Sleeping Babies and fMRIs

The chain of discoveries is described in an NPR story. It began when Psychologists Alice Graham, Philip Fisher, and Jennifer Pfeifer decided to take a look at what happens inside the brains of infants when they hear conflict and angry voices. They planned to use a noninvasive brain-scanning technique called fMRI to scan the brains of infants and identify areas of the brain activated by angry voices. But getting babies to hold still for a long time during a noisy test wasn’t going to happen—unless they tested sleeping babies. Game on!

Sleeping Babies and Arguments

Once parents rocked their children to sleep, the babies were placed in the scan machine where voices speaking nonsense words spoke in 3 different tones: happy, neutral, and angry. According to the NPR report:

Graham, a doctoral student at the school, said the most surprising thing was not that the brains of infants responded differently to the different tones—which suggests that the brain is more than capable of taking in information while a child is asleep—but that there were stark differences among the children. Infants who came from homes with lots of conflict, where the parents yelled at one another and called each other unpleasant names, showed a heightened activation in certain areas of the brain.

“What we see for the infants in higher-conflict homes is that they are showing greater reactivity to the very angry tone of voice,” Graham says, “and that reactivity is in brain regions that we think are important later on in terms of your ability to regulate your emotions and function well.”

Post-Traumatic Stress Disorder, Sleeping Babies, and Arguments

Another Different Dream post lists the following factors that increase the risk of children developing PTSD:

  • Age of the child – the younger the greater the risk
  • Emergency situations – the more unexpected, the greater the risk
  • Frequency of trauma – the more frequent, the greater the risk

Babies whose sleep is frequently disturbed by their parents’ arguments meet all three criteria. Perhaps this is a link to why some children develop PTSD. It’s certainly worth thinking about. And it’s certainly motivation for parents to find another way to disagree than angry words.

What Do You Think?

Do you think the research holds water? Do you have any anecdotal stories that support it? Leave your opinion 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 both in the upper right column on this page.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Author Jolene Philo

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Hidden Grace for Parents of Kids with Special Needs

Hidden Grace for Parents of Kids with Special Needs

Hidden Grace for Parents of Kids with Special Needs

Hidden grace. That’s something parents of kids with special needs can use on a daily basis. Today, guest blogger Stephanie Ballard uses a poem to reveal God’s hidden grace in her life.

Hidden Grace

Sometimes having a child with special needs is exhausting. Can I say that without feeling a wave of guilt wash over me? Don’t misunderstand my meaning, I love my son with all that I am. Sometimes I just wish that we could breathe in with a sigh of relief and say…”Well that was hard, but we have gotten through it.” I have learned through the years that having a child who requires so much care is all about learning to live life day by day. It is coming to the realization that letting go means opening yourself up to a life filled with both joys and uncertainties. I often find myself hiding at these crucial moments, like a petulant child sitting at the dinner table refusing to try their lima beans. “But I am tired,” I cry, “God do you even hear me at all?” I hide behind busyness, I hide behind stoicism, and most of all I hide the fact that I am so very afraid of what the future holds. I step out of the shadows eventually, look upward and silently ask, “Are you still there God?” His answer is the softest whisper, so soft…that I must become absolutely still to hear it. “I am here” he says, “And I will never leave you.”

When we were all just little kids,
We would play hide and seek,
One of us would count to ten,
Then yell to the others…”Don’t peek.”
“Come and find me”…we would say,
While doing our best to stay hidden,
With legs and arms all poking out,
I wonder just who were we kidding?

But as the years began to pass,
We went on to new things,
Grew up and had our own kids,
As this is what life brings.
And though I am a grown-up now,
Life finds daily ways to remind me,
That I still seek a hidden place,
In which no one can find me.

When I pursue things as a child,
Engaging in games I once played,
The walls of discontentment,
Begin to slowly fade.
My son took my hand yesterday,
Hoping that I would agree,
To play a game of “hide and seek.”

“Olly-olly-oxen-free,”
I thought of all the tasks at hand,
So much I must get done,
But then I heard him whisper,
“Mom wouldn’t it be fun?”
And so, he covered both his eyes,
And then I looked around,
To find the perfect hiding spot,
(Trying hard not to make any sound.)

My child is so very smart,
(He found me right away)
And managed to teach me a lesson,
(As he teaches me things everyday)
“I think I’m better at this game,”
He said, with unbridled pride.

But practice makes us perfect,
And God says, “we all hide.”
And that is why he sent his son,
To search through every door,
And find where we’ve been hiding,
Cuz…we’re what he’s looking for.”
I smiled at the very thought,
Of God trying hard not to peek,
And calling out, “Where are you?”
And, saying, “It’s you that I seek.”

Life hasn’t brought the perfection,
Envisioned in childhood dreams,
Yet, I have grace-filled moments,
More often than it seems.
Freeze tag, jump rope, hide and seek,
Are games that I’ve outgrown,
But it’s nice to think God might come looking,
When I’m hiding, and lost, and alone.
Sometimes I need to hear the words,
“I know what you’ve through
And no matter where you might be hiding,
I’ll always come looking for you.”

~Stephanie Ballard

Where Do You See God’s Hidden Grace?

Do you ever hide from God and sense Him looking for you? When do you hide? How does He find you? Share your experience 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 both in the upper right column on this page.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.

Author Jolene Philo

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Hidden Grace for Parents of Kids with Special Needs

4 Special Needs Summer Routines

4 Special Needs Summer Routines

Summer vacation is here…or right around the corner, depending upon where you live. This spring, guest blogger Kimberly Drew prepared for vacation with her daughter who has special needs by establishing some summer routines. Today, she shares some of her ideas with us.

4 Special Needs Routines for Summer

Everywhere I look, spring is turning into summer! I have an internal countdown to the last day of school. My year never ended with December or started in January. In my mind, it has always revolved around school.

Our daughter Abbey has a short break and then goes back to school to maintain her therapies over the summer months. I always look forward to the weeks she has off because it means I get to snuggle and see her more. But I also feel a tinge of, “ahhhhh!” knowing she is very attached to her routine. I try not to take it personally that she will get her shoes and sign “school” to me at the front door.

This has me thinking about how I can handle those weeks this summer a little differently. For one, like most children, she thrives on a routine. Something about being out of school evokes this great desire to stay in pajamas and live on a diet of spontaneity. This is okay to a degree, but I don’t know why it never occurred to me to have at least one or two parts of her day that can be predictable.

Here are just a few of the things that we will be incorporating into our summer days off routine.

  1. A Velcro Board. Abbey uses different manipulatives in school and icons on her iPad to mark a transition of activities. I think she would love it if we had a smaller version of that at home.  I hope to make pictures of some of the things we do every day as well as some of the things we do occasionally for her to pick up and move.
  2. More Books!  Abbey loves books, and we usually read a lot over the summer anyway  But I think giving story time a name and set time each day might give her that sense of predictability that she looks forward to.  She would love to move a picture over on a Velcro board to say, “It’s story time!”
  3. Snacks Outside.  In addition to easy clean up, moving snacks to the deck will get us out in the sunshine if we aren’t enjoying it already. It doesn’t hurt that it also encourages us to get out of our PJs!
  4. Clean up songs. I worked as a preschool teacher for a year or so in college, and the school had a “clean up” song for the kids. At a certain point in the day, we would start the music and the kids went crazy cleaning up. They loved it!  Abbey loves music, loves predictability, and I think hearing the same song everyday at a particular time would help all the kids with getting toys put away. We usually clean up toys before my husband comes home from work and I’m about to start dinner anyway, so why not make it fun and an audible transition time with music.

Who knows, maybe some of these ideas will stick for the whole year!

What Are Your Summer Routines?

What summer routines have you established to help your child with special needs? How are they working? Leave a comment to add to Kimberly’s list.

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 both in the upper right column on this page.

Photo Credit: www.freedigitalphotos.net

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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.

Author Jolene Philo

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Strange Christmas

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The 2015 Christmas season has been a strange one so far. All our family gathering were or will be at the homes of other rellies. ThanksChristmas with extended family at my brother's on Thanksgiving weekend. Christmas celebration with both our kids and their families...

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Hidden Grace for Parents of Kids with Special Needs

Special Needs Parenting and the Importance of Forgiveness

Special Needs Parenting and the Importance of Forgiveness

Special needs parenting is hard work, a fact guest blogger Amy Stout knows from experience. She also knows the part forgiveness plays in keeping a marriage strong. In today’s post she transparently shares how she learned how to ask for forgiveness.

The Sock Under My Nose

I am the proud and resilient mommy of a little girl who experiences special needs. She is my one and only child, so my introduction to mommyhood was and has been quite different than I had planned.

A Special Needs Mom’s To-Do List

My days are full of making doctor’s appointments, researching treatments, following up on test results, updating family and friends via our Caring Bridge page, coordinating procedures, filling out insurance paperwork, appealing insurance denials, applying for resources, setting up and attending therapy appointments and all the other day to day tasks.

They are also full of convincing my daughter to eat (something she hates to do), prying her fingers off the door frame so we can bathe her (also something she hates), working on her speech, occupational therapy, social and anxiety goals. We have also been teaching her sign language, appropriate manners, how to request things she wants, and how to answer, “Yes, I’d like that” or “No, thank you.”

Precious minutes are consumed explaining to cashiers in stores why our daughter does not respond when they greet her and why she does not make eye contact when spoken to. We also work to smooth over the hurt feelings of relatives and close friends who feel slighted when our daughter does not return their affection, behave excitedly over their gifts, or desire their hugs.

And yet, the general business of maintaining a life and home are still on the list to be addressed: laundry, dishes, preparing meals, vacuuming, paying bills, and filling the car with gas, grocery shopping, lawn maintenance, trash removal, and so many other necessary responsibilities. The priority list must also include quality time to build, maintain, and nurture my marriage, friendships, a spiritual life, personal health needs, investing in the community, and any private goals I might desire to achieve. My to-do list is endless.

Special Needs Parents’ Marriage Pact

At 6 months of age, my baby girl stopped sleeping. She would be up every two hours the entire night, and it didn’t take long for my husband and me to become completely exhausted. We functioned the best we could, but throw into the mix all of the administrative duties of raising a child who experiences special needs and, let’s face it… we were beyond tired.

My husband and I learned quickly that we needed to make some ground rules and agree to be extra-forgiving toward one another as when we were trying to function in the early morning hours on next to no sleep, we found we weren’t at our best emotionally nor were we high achievers on the patience and kindness meter. We made a pact that any impatience or grouchiness toward one another that occurred between midnight and 7am the next morning was never to be held against the offending party. Forgiveness and understanding poured forth in our marriage like never before.

Special Needs Parenting Frustration

On one particular night, when my daughter woke in the wee hours of the new day, I went to her room and began to attempt to rock her back to sleep. When I did, I noticed that she was missing one of her socks. My husband had stopped in to check on us and I sweetly asked him to please look for the sock. Fumbling in the darkness, my servant-hearted husband looked and returned a few minutes later telling me that he could not find her sock.*

During the daylight hours, this was a joke between the two of us and would elicit light-hearted teasing such as “If it were a snake, it would have bitten you” or “sometimes you might actually have to MOVE something to find it.” However, on this particular night, his inability to find her sock quite annoyed me and I was in no mood for jokes. I sarcastically informed him that socks don’t just get up and walk away.

So this time, using a flashlight, he picked up her mattress, looked under her blankets and behind her bed.

With every exchange, our voices were getting less sweet and more rigid and our (trying to be quiet yet insistent) verbal hissing became more determined.

Feeling quite irritated at his lack of being able to locate the sock, I requested, through gritted teeth, that he look again.

This time, he looked under her bed, by the changing table (she could have thrown it), and on the floor.

There was still no sock.

My daughter, who preferred to be rocked, facing out, was enjoying our nighttime communication dance immensely. (At least someone was having a good time)

When I had finally had it, I told my husband to come and rock our daughter so that I—finder of lost socks extraordinaire—could locate the sock.

Special Needs Parenting Forgiveness

My husband, still using the flashlight in a futile attempt to be discreet, approached the rocking chair. When he was about two feet away, he abruptly stopped. A purely mischievous grin traveled across his face and an incredibly EVIL laugh bubbled forth from within him.

By now, I was completely perturbed with my husband and I asked him what was so funny. He was laughing so hard he couldn’t even respond, and, instead, pointed to my daughter’s left side. I looked down and noticed my precious daughter was waving to her daddy. To my dismay, there, on her left arm, was the missing sock! Somehow, in the night, she had taken off her sock and put it on her arm like a sock puppet! The sock had been under my nose the entire time!

Needless to say, apologies were exchanged, a tiny dose of crow was consumed, and we have had many laughs over this very humbling story. My innocent daughter unknowingly played a very funny and timely joke on her very tired and overwhelmed mama.

Score one for her!!

*Note: This is the same husband who will stare directly at an object and insist he cannot see it. I am sure no one else experiences this in their home.

Score One for You

What lessons in forgiveness have you learned? How have those lessons improved your marriage? Leave your story in the comment box and make us smile.

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 both in the upper right column on this page.

Photo Credit: www.freedigitalphotos.net

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Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

Author Jolene Philo

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Strange Christmas

Strange Christmas

The 2015 Christmas season has been a strange one so far. All our family gathering were or will be at the homes of other rellies. ThanksChristmas with extended family at my brother's on Thanksgiving weekend. Christmas celebration with both our kids and their families...

read more