Changed Perspective and Parenting Kids with Special Needs

Changed Perspective and Parenting Kids with Special Needs

Changed Perspective and Parenting Kids with Special Needs

The longer guest blogger Ellen Stumbo parents her daughters, the more her perspective about special needs changes. Today she’s here with a new shift in her perspective about her children and herself.

Changed Perspective

She was loud and off key. I thought about closing the window to muffle the sound, only to realize the window was closed. I watched her through the glass pane; earplugs in, iPod in hand, swinging. My husband was tucked away in a corner of the courtyard reading a book.

There goes Andy’s peaceful time outside.

It was our first morning back at the Ronald McDonald House after waiting several days for an open room. Before that, we were staying at a hotel that was undergoing loud, really loud, renovations. With two children with sensory processing issues, the calm of the Ronald McDonald House was a nice welcome for all of us.

After breakfast, Andy decided to go outside to the courtyard for some much-needed alone time and quiet. He’d found alone, but not quiet.

My oldest daughter came to the window.

“Who’s that mom?”

“I don’t know.”

“Does she have special needs?”

In our family, this is a pretty normal question. “Yes, I think she does.”

“Do you know what her special need is?”

“No.”

“What is she singing?”

“Hmmm…I am not sure.”

“I think she likes to sing.”

“Yes, I think so too.”

Ellie returned to her sisters, who were watching Sponge Bob. I stayed by the window, watching the young lady sing and swing. Sometimes, she seemed to close her eyes while she sang, like she could feel the music inside of her and it was pouring out. I smiled.

I’m a terrible singer. Enough people have joked with me about my singing abilities, and others have skipped the joking and let me know I should stick to dancing.

But like that young girl, I can feel the music, and sometimes, I just want to sing out loud. But I care too much about what other people think. I am held back by my own insecurities and inhibitions.

I had a changed perspective, because I wasn’t looking at a girl with special needs who sings loud and off key; I was looking at a girl who was so free, so full of life in that very moment, that it made me wish I could be more like her.

Somehow, I pictured God looking down at her and smiling because her joy was so real. I wished I could reach out and touch it, feel the joy in my hands, hold it close. I wondered how many times I have held back from really enjoying life. How often do I really allow myself to be fully me?

That is the reality of raising children with special needs. They give us a changed perspective, because we come to recognize what really matters. And we begin to see the real beauty and value of life through those that most of the world would describe as “broken.”

If only we could see our own brokenness just as clearly.

And if only we could enjoy life just as freely.

Andy returned to the room after an hour.

“Did you hear that girl singing?” he asked.

“Yes, I did.”

“It was beautiful.”

“Yes, yes it was.”

We looked at each other and smiled. Because it was true.

It was beautiful.

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Ellen Stumbo is a writer and speaker and the mother of three girls, two with disabilities. To read more of Ellen’s writing, visit her blog at www.EllenStumbo.com.  She can also be found on Twitter and Facebook.

Author Jolene Philo

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Special Needs and Waiting for Manna

Special Needs and Waiting for Manna

Special Needs and Waiting for Manna

Guest blogger Rebekah Benimoff knows what it means to wait. Today she shares how she’s learned to wait expectantly until God provides what she and her family needs.

Special Needs and Waiting for Manna

In the special needs universe, there comes a time of waiting. Appointments are made, meetings scheduled, points of contact lined up. Everything I can do has been done, and now it is time to wait, not on God, but in God.

Along this way there has been clear guidance. Little provisions, that in the scheme of things, are not so little. The counselor who thought to pull records so diagnoses and treatments could be accessed exactly when needed. The diagnostician who just happened to walk into the office when I was filling out paperwork. The occupational therapist’s office who called to let me know that insurance had finally approved a visit, records had been reviewed and they are ready to schedule an appointment…a couple months out. The call that came today, moving the appointment a week closer because the doctor had a conflict. (I’d call it a divine intervention.) Early on God told me that there would be a time of waiting—and to not be discouraged.

In fact, Joshua 1:9 has been before me for months now:
 This is my command, be strong and courageous. Never be afraid or discouraged because I am your God, the Eternal One, and I will remain with you wherever you go.

God has said clearly that He will meet every need, and that He gives direction when I have the heart to hear. Sometimes I am to move, and other times, to wait. Even though it feels a bit like wandering around in the desert, there is much to be learned in wilderness waiting.

Whether the wilderness place comes after a great rescue, or seemingly out of nowhere, steps can be ordered if a heart is willing to keep watch for the One who guides. There is a time to feel the weight of waiting.

Regardless of the season, I can be prepared, for the One who leads also sustains—with spiritual manna. I am learning to not step forward until the timing is complete. For in His time, God removes every obstacle. Nothing can separate me from the will of God except my own impatience.

So now, in this time when I am guided to stand firm, it’s about waiting in the preparation place. Waiting can be passive or active. Do I grumble and complain about how slowly the time is moving, or do I watch and pray, recognizing His provision with gratitude?

It is mine to choose where to focus. And as I move with Him, in Him, God gives enough for today; teaching me to not be greedy, to take time to listen to His whispers, which come as I am still before Him. Time to enjoy the breeze on my face, time to recognize His caress in my heart and soul. I must be still to know the wind as His whispers. To be ever aware of his provision, to allow songs of gratitude to spring forth. It’s time to remember the many ways He has provided along the journey and look for the ways He still provides manna today. I lift my eyes up at the landscape rolling out before me. And it is here, in the wilderness, that I remember.

My help comes not from the hills, but from their Maker.

How Do You Wait?

How do you wait for God’s provision? What sustains you? How does waiting make you look to God instead of what He gives? Leave a comment.

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Rebekah Benimoff is the wife of a husband with PTSD and the mother of two young men, both of whom grew up with medical and special needs. She blogs at In the Chaos…. and In the Calm (justmemama.blogspot.com).

Author Jolene Philo

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Whose Special Needs Battle Is It Anyway?

Whose Special Needs Battle Is It Anyway?

Whose Special Needs Battle Is It Anyway?

Today’s post comes from a new Different Dream blogger, Nickie White. In her first post, she shares some special needs parenting frustrations and hopes we all share.

Whose Special Needs Battle Is It, Anyway?

Tonight I could absolutely lose my mind.

I was cooking two different skillets of grilled cheese, one with margarine, gluten-free bread and rice cheese, and one with two wheat-bread-with-dairy-cheese sandwiches… when I walked away to referee an argument between my children, and the smoke alarm went off. Then the house alarm was triggered…then the sirens on the two-way rescue system turned on. I entered the code and…NOTHING…then four little voices began to all ask questions about why or how or are we going to catch fire?

I called the alarm company, trying to talk over the two way system installed in my house, but I couldn’t hear them over the sirens and children. The dispatcher called my husband (in California this week) to ask him if we need aid…and he’s now blowing up my phone with messages while I am talking to the dispatcher, explaining that I have just burnt a grilled cheese…or by now all three.

Joel couldn’t have gone out of town last week when both my parents spent time in town? I couldn’t have been making only one pan of grilled cheese? No, those are easy options and folks, that just ain’t the path we are on. I glanced over to the 2 inch, three-ring binder with a vinyl label reading LOGAN in cute font, realizing that my priorities can sometimes be jaded. My youngest son has been having unexplained medical issues for months now, and none of the doctor’s we’ve gone to have been able to discover why this is happening. We’ve been spinning in circles…for months.

When Joel is gone for these short trips it never fails that I refuse to unwind, to listen to music and calm my soul I plow: laundry, dishes, whatever is in my path. It must be done. I bark all the way through. In my mind I’m getting the house ready for Joel to come back, but I’m just hiding the fear of weakness or failure.

There are nights I read my Bible angrily, desperate for GOD to just shout at me! My heart is raw almost to default. Certain in my mind that He has taught me quite enough in this last year, my heart still craves more. Not the heartache but the gut-wrenching lessons. We are indeed fighting an uphill battle and I must just keep my sword sharp.

My sword. My priority.

Have you ever done a sword drill? During Wednesday night services as a kid we did, every week. I knew the song. I could go right to a book of the Bible before most around me. IT was part of me. Is it still that way? No, it isn’t. That big green 2 inch binder with Logan written in a cute font seems to consume me some days.

Googling specialists across the country can occupy hours of my time. I can’t solve all the issues all at once. I can battle against deceit and I can hope to make my littlest son as comfortable as I know how, but the truth is I can’t fight these battles with a dull sword.

David used but a stone to conquer a giant, yet his human mistakes cost him God’s blessing and brought sorrow on his family. What was the difference? The giant wasn’t his to fight. When David forgot only the stone was his and the giant was conquered by God, it set the stage for his kingdom to begin crumbling.

I too must remember who conquers the giants. My priorities must be sharpening my sword, so when HE speaks to me in my angry moments I can hear Him. That green binder is important for Logan’s care, but it won’t heal him or bring him comfort. It may be my stone but it can only be used by Him, for the battle is the Lord’s.

You will not have to fight this battle. Take up your positions; ‘
stand firm and see the deliverance the LORD will give you, Judah and Jerusalem.
Do not be afraid; do not be discouraged.
Go out to face them tomorrow, and the LORD will be with you.'”
2 Chronicles 20:17

Who’s Fighting Your Battle?

Does Nickie’s struggle resonate with you? What verses or Bible truths help you give the battle back to the Lord? Leave them in the comment box to encourage others.

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God Is Enough

God Is Enough

A visit to where we lived when our son was born & diagnosed with EA/TEF makes me want to tell the young worried mom I once was that God is enough.

This week I’m visiting the vast, remote South Dakota country where we lived when our son was born. I’m driving on roads that look like they stretch out forever over miles and miles of short grass prairie in a county with more pronghorn antelope than people per square mile.

Each day, I fight an irrational urge to travel the long miles between Camp Crook, where I am staying, and Rapid City. I’m tempted to arise before dawn and drive, scanning the road, looking for a 1980s era tan Chrysler K car. In my mind, I picture the intent, young father behind the wheel, a worried young mother in the passenger seat, and a small baby strapped into the car seat wedged between them. I imagine their eyes straying to the clock.

Wondering if they’ll get to the Rapid City hospital in time for the baby’s 8 AM appointment with the gastrointestinal doctor.
Wondering if the baby will ignore his empty tummy and stay asleep until they get there.
Wondering how the procedure will go.
Wondering if the procedure will do more good than harm.

I know the hunt would be fruitless. I know this family moved away decades ago. I know the baby is now a young man with his own wife and child. I know the father is now approaching retirement. But there is so much I want to tell that worried mother as she gazes at her baby. Her stomach a knot of anxiety. Her mind racing with questions.

Will I have enough breast milk to keep our baby alive?
Will he be all right?
Will the scar in his esophagus ever stretch out so he can take a bottle again?
Will we ever sleep through the night again?
Will all these medical procedures mess with his head?
Will I ever understand why God is allowing our baby to suffer so?

I want to tell this worried, young mother yes.

The rest of God Is Enough can be found at the Not Alone website.

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.

Brokenness and Special Needs: All In Seeds in God’s Garden

Brokenness and Special Needs: All In Seeds in God’s Garden

Brokenness and Special Needs: All In Seeds in God’s Garden

Brokenness is part of parenting a child with special needs. Guest blogger Stephanie Ballard is here with a poem about how God used the seed of brokenness to grow her faith and reveal the beauty of her son’s life.

Stephanie’s Seeds of Brokenness

I was 22 weeks pregnant with my son Braeden when the high risk doctor that I had been referred to gently took my hand in his and sighed. “I have some distressing news,” he said. The ultrasound had revealed that my unborn son would be born with a serious heart defect, and had a very high risk of having other genetic abnormalities. The doctor was quick to point out various areas of concern on the monitor. “His liver looks enlarged,” he said,” and I think he may be missing a kidney as well.”

“What can we do?” I asked him tearfully, and he began speaking about “quality of life” as he handed me a referral to a pediatric cardiologist.

“I’m so sorry dear,” were his parting words…”good luck to you.”

I was distraught as I left that doctor’s office, the words “quality of life” echoing in my mind in the weeks and months to come. I found the peace I had been seeking when my son was born several months later. When I finally held him in my arms for the first time, his fragile little body pressed against mine, I realized something of the utmost importance. God can bring beauty into our lives through brokenness. Braeden is eight years old today, and I am fond of reminding him that God loves to grow miracles in the midst of impossible circumstances.

Broken

The farmer told his wife one day…
“Well, spring is nearly here
Its time to plant some flowers
On that hilltop that lies near.”
And so he went right to the store
To buy the perfect seeds
Flowers of most every kind
To fit all of his needs.
And then they had to till the ground
Under the noonday sun…
They prepared the perfect field
Then marveled at all they had done.
Flowers would soon bloom here
Yellow…purple…blue
A meadow filled with glory
In every single hue.
And so the farmer held his seeds,
Which cost a pretty penny.
He said, just drop one at a time
As we do not have many.
And soon their chore was near complete
Each seed set in the soil
His wife said, “It’s well worth it,”
This day of work and toil.
And then she nudged her husband, asking.
“Is this seed okay?
It’s cracked right down the middle
Should I plant it anyway?”
“A seed like that won’t grow,” he said
Just throw it to the winds.”
And this is where the story of
The broken seed begins…

The days and weeks passed quickly
The garden, it grew grand
With sunshine and the gentle rains
And life from God’s own hand.
The farmer and his wife were proud
Of what they have achieved
Their garden was perfection
Most everyone agreed.

Meanwhile…
The little seed that they forgot,
Tossed by the farmer’s wife,
Decided that it must now fight
To have a chance at life.
God looked kindly on this seed
And said, in retrospect,
“They deemed you small and broken,
I say, ‘You are perfect.'”
And so the seed mustered its strength
And pushed out of its shell.
“I may be just a seed,” it thought.
“But I have a story to tell!”
And every drop of water
And sun that came its way
Made it that much stronger.
It would be a flower someday.

And then one day, it happened,
Much to the wife’s surprise
As she walked past the meadow
She could not believe her eyes.
The loveliest flower that she’d ever seen
Sat just beyond the trees.
She stopped what she was doing
And dropped down to her knees
“Surely, God is in the place,”
She said as tears fell free,
As only God Himself, could make
A thing of such beauty.

“A miracle it must be,”
She said, raising worn eyes above,
“A reminder of all that can grow
With God’s enduring love.”
And others came to see it, too.
This flower, oh so rare,
Red and gold, and violet.
They could not help but stare.
No one had seen it’s equal,
And no one would again.
A perfect testimony
Of what happens when one says, “I can.”

God looked down from heaven
A smile on His face.
This flower a reminder
Of His everlasting grace.
The petals were a rainbow,
Each color seemed to shine.
“Let those who see you marvel
And know that you are mine.”
Life may bring us heartache,
A trial, storm, or weed.
But God can grow a miracle
From just one broken seed.

But God has chosen the foolish things of the world to confound the wise,
and God has chosen the weak things of the world to shame the things which are strong.
Colossians 1:27

How Is God Growing You?

What seeds of brokenness is God coaxing into beautiful flower in your life and the life of your child. 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 the first in the pop up box and the second at the bottom of 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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Special Needs Parenting: Not the Expected Destination

Special Needs Parenting: Not the Expected Destination

Special Needs Parenting: Not the Expected Destination

A special needs diagnosis is the beginning of an unexpected journey. Guest blogger Michelle Selent recently heard an analogy that resonated with the journey her family is on. Here are her reflections on what she heard.

Special Needs Parenting: Not the Expected Destination

I heard something recently that was so good I just had to share it with you. I was listening to a sermon and an analogy was shared from a special needs parent. I can’t take credit for this, but I certainly can relate to it. Let me try my best to relay the story.

Imagine yourself planning for a trip. A trip to Italy. You prepare with much excitement. You get every detail set to the best of your ability. Then your travel day arrives and you board your plane, eagerly anticipating your arrival in Italy. As your plane lands and you get off the plane you realize you have actually landed in Holland. You explain to the flight attendant that this is not the destination you set out for. You realize then that there is no going back. It was a one way trip and Holland is where you are. At first it is disappointing. You had certain plans in your mind that you realize now are never going to happen. You can wallow in that unexpected disappointment or you can open your eyes and see the beauty that Holland has to offer.

I think that is how it is with special needs parenting sometimes. Before we adopted our daughters with fetal alcohol syndrome all I had was Italy on the brain. Our new family members were going to be just like our biological children, just a different color ;). Well, when we landed we realized we were not in Italy at all. Then it hits you that you won’t even get to Italy. I really had to mourn my expectations. I had to mourn what I thought would be. But you know what? Holland really is beautiful. My daughters are so very, very precious. They don’t learn or progress the same and they require so much support, but you know what? They have grown and come so far. They went from failure to thrive to thriving. They smile and are happy. They laugh big beautiful gut laughs. They love to play dress up. They can feel and give love. Yes, that has come with years of therapy and specialists and medications and lots and lots of prayer, but you know what? I see the beauty in Holland. Holland isn’t where I planned to be, but you know what? It is full of tulips.

Have you ended up somewhere you did not plan on being? Let me encourage you to examine your surroundings. It may be different, but I am sure it is full of beauty.

Where Are You Going?

If you have an answer to Michelle’s question, leave a comment in the box below. You might discover other people on the same road with you.

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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Michelle is the mother of two adopted daughters with fetal alcohol syndrome. You can connect with her on Instagram.

Author Jolene Philo

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