Light in the Darkness of Special Needs

Light in the Darkness of Special Needs

Light in the Darkness of Special Needs

Our son was six months old on his first Christmas. By then he’d racked up one ambulance ride, two surgeries, three hospital stays, three airplane trips (two of them life flights to the University of Nebraska Hospital and one airline flight to a scheduled doctor’s appointment at the same medical facility), and dozens of 240-mile round trips to Rapid City for doctor’s appointments and procedures.

Call it the special needs version of the Twelve Days of Christmas if you like.

By the time the holiday season rolled around, all my husband and I wanted for Christmas was a good night’s sleep and to stay put. My parents and our extended families accepted the news graciously. A few days before Christmas, circumstances seconded our decision when our guy came down with the chicken pox. A mild case to be sure—only one pox on his forehead, a fever, and a week’s worth of fussiness—but chicken pox none the less.

About two days into the fussiness, I was shouting “Ba-humbug” louder than Ebenezer Scrooge ever did.

Our house was enveloped in darkness. My husband and I were severely sleep-deprived. Our baby picked up every virus I brought home from my students at school, or my husband carried from the clients at the boys’ ranch where he worked. Our son was allergic to anything but breast milk, but he couldn’t nurse so I spent hours day and night hooked up to the people version of a milking machine. Even so, he was below zero on the weight and height charts for his age. We lived 70 miles away from our family doctor, 120 miles away from the pediatrician, and 750 miles from doctors who specialized in treating children with our son’s condition. My faith was waning. My anxiety level was waxing.

I was drowning in darkness.

To read the rest of this post, visit the Not Alone website.

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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. The first book in her cozy mystery series, See Jane Run!, features people with disabilities.

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Gift Ideas for Kids and Teens with Special Needs

Gift Ideas for Kids and Teens with Special Needs

Gift Ideas for Kids and Teens with Special Needs

Okay, everybody stand up. Now, sit down if you’re done Christmas shopping. Remain standing if you’re still looking for presents for you teens with special needs or are shopping with a limited budget. If you’re still on your feet, this post is for you! If you’re sitting down, scroll down to the end to leave your gift recommendations in the comment box.

Devotional Books for Teens with Special Needs

Last month my friend Katie Wetherbee, who blogs about special needs education and special needs ministry at Diving for Pearls, uploaded a piece about devotionals for teens with special needs. Katie brainstormed with her colleague Kelly Norville, and together they created this fantastic list:

  • Soul Surfer by Bethany Hamilton, written by a real life surfer when she wasn’t much beyond her teen years. There’s a movie, too, if your teen is into that.
  • 10 Minute Parables from Group Publishing. Katie says, “This series is designed specifically for teens, so those who have difficulty with comprehension, or who are functioning on a more concrete level.”
  • 10 Minute Moments: The Basics, also from Group. This book makes the foundational truths from the book of John attainable for kids who are concrete thinkers.
  • What’s In the Bible Series from Jelly Fish Labs. This series was created for kids, but Wetherbee says the quick pace of the humor and language appeals to older kids and adults.
  • The Thirteen Most Important Bible Lessons for Teenagers from Group. These lessons offer drama and hands on material, too.
  • Believe it Or Not Bible Studies by Group. This will appeal to kids fascinated with the interesting and obscure.
  • God, Our Father by Friendship Ministries is an long time, solid standard for those with special needs.

You’ll find Katie’s list at Solutions: Finding Devotional Materials for Teens with Special Needs.

Gifts around $10 for Kids with Special Needs

Sylvia Phillips, a Different Dream guest blogger, has also published a list of gifts for kids with special needs. Every gift is around ten dollars, extra appeal if you’re on a budget. Her list includes:

 What Are Your Best Special Needs Gift Recommendations?

Okay, if that helped you finish your Christmas shopping, sit down and put your feet up. For the rest of you, it’s now your turn. What gifts do you recommend for kids with special needs? Leave your ideas in the comment box. Merry Christmas!

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.

Photo Credit: www.freedigitalphotos.net

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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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Just the Successes: Special Needs Christmas Advice

Just the Successes: Special Needs Christmas Advice

Just the Successes: Special Needs Christmas Advice

Guest blogger Becky Hallberg offers a welcome holiday suggestion to parents of kids with special needs. Her wise words are guaranteed to lower your stress, put a smile on your face, and encourage you to focus on the reason we celebrate Christmas. So read on…

Just the Successes

The holidays are a tricky time for our family. This time of year is full of traditions, the sparkle of lights, and the melody of Christmas music. But how do you cope when these exact things, which we all look forward to, when they are possible triggers for a family member? How do you deal with all of the “what-if’s” that the season brings?

We live near a major city and so the opportunities for enjoying the holidays, and all the glitz and glamor that go with them, are pretty much endless! It’s the perfect place for a Christmas-lover like me! I would love to take our kids to all of the light displays, musical productions, festively-decorated areas, and soak in the goodness of time spent together!

And then the big, glaring reminder of all the sensory issues sneaks in to smack me in the face. We have one who can’t always tolerate those things – but sometimes he can. What do you do, as a parent, when things may go exceedingly well, or they may fall apart horribly?  What’s the right choice to make?

I wish I had the answer, all perfectly-figured, decisively-calculated, and beautifully-packaged, to hand to you. That would be quite a gift, wouldn’t it? I’d love to receive that gift, and I’d love to pass it along to you!

I spend time each year, wondering—worrying, even—about our decisions as they pertain to our son and what he may or may not be able to tolerate.

Are we pushing too much?
Not pushing enough?
Will he survive waiting in the line?
Will he miss doing (whatever it may be) if we don’t try?
Are we doing something wrong?
Are we doing anything right?

That’s a lot to wrestle with, in just considering whether or not to go on an outing. I often find myself figuring that skipping something may be the easiest option—no lines, no hassle, no sensory overload. And then the mommy guilt sets in.

Can I attempt to encourage you? Our feelings, as parents—mine, yours, his, hers—they count. They matter. They are valid—every last one of them. If I feel this way around the holidays, I’m sure many of you do as well. I am so grateful to have my faith in a loving God, who I can share my feelings with, openly and honestly. Let’s face it—He is God, He already knows how I feel.

I’m learning that my child’s ability to cope does seem to get a little better as he gets older. However, his age is no guarantee for success in any situation.

And that one word—success—is such a key word in all of this.

What if you and I decided that we would only accept being defined by our successes this Christmas season? What if our yardstick for measuring our enjoyment of the holidays was only made up of the successful moments? We could do that, you know—just count the successes.

Chances are, we know there will be moments that aren’t successful—maybe even whole days. But what if we shook it up a little this year and decided in our hearts that we wanted to measure only the successes?

What if I shared my successes with you, and you shared yours with me, and together, we held those precious gifts as reminders that all that we do as parents matters. It’s vitally important. But we don’t need to carry the sting of things going wrong. Take the hurts, the shattered plans, the missed opportunities, the doubts, questions, and worries and leave them with Jesus. Let Him heal the hurts and mend the wounds.

Let’s sit with Jesus in the warmth, love, and delight of all that you are doing well. Let’s measure our enjoyment of this time of the year by the successes and thank Him for those times. I will cling to those as we move through the holidays and into the New Year. Will you join me?

Remember:
just the successes

Becky and I invite you to share your successes in the comment box. To read more from Becky visit her blog, Shar Sharing Redemption’s Stories.

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Christmas Miracles of the Special Needs Kind

Christmas Miracles of the Special Needs Kind

Christmas Miracles of the Special Needs Kind

Guest blogger Stephanie Ballard and her sons are getting ready for Christmas. Today, she shares a poem about recognizing Christmas miracles of the special needs kind…and all year long.

Miracles

The hustle and bustle of the holiday season is upon us once again. It can be such a stressful time, with a never ending list of things to get accomplished. Let us remember to look for the Christmas miracles. They are evident everywhere…but easiest to see through the eyes of our children.

Outside the snow was falling
In a white, and wintry flurry,
Mom was baking cookies
And she seemed in quite a hurry.
The shopping was all finished
The tree was decorated
Tomorrow Christmas would be here
The children were elated.
And soon the youngest tapped his mom
His face…a bit forlorn
“Are miracles for real Mommy,
like when Jesus was born?”
“Of course they are,” his mother said
While picking out a book
.
“Miracles are everywhere
You only have to look.”

And so, he sat up in the chair
And snuggled in her lap
So cozy…warm and comfy
He was ready for a nap.
Then Mommy read the story
More important than the rest
About the Christmas miracle
Which still remains the best.
She read to him of Mary
Who said, “God’s will be done,”
Of how the angel told her
That she would have a son.
“
Do not be afraid,” he said
,
“You have found favor… thus
You’ll call your son Emmanuel
And this means, ‘God with us.'”
She read of all their struggles
Of no room at the inn
Of how we needed someone
Who could save us from our sin
Of how the very brightest star
Was shining far and bright
And shepherds got to witness
God’s miracle that night.
And wise men came to worship
This most amazing birth.
Then mommy closed the book and said
,
“God’s miracle on earth.”

“

Does God still perform miracles?”
the boy asked hopefully…
“I know he does,” his mother said.
“
Just look at you and me.
Why love, it is a miracle
,
as is determination
–
finding a reason to smile each day
in any situation.
Seeking to be hopeful,
treating each day as unplanned
.
a simple prayer…a thankful heart
.
Now do you understand?
Make each day a miracle,
keep your eyes open wide
for almost anything can have
a miracle inside.”

The child kissed his mommy’s cheek
as he had grown tired
.
His mother put him in his bed
Her heart had been inspired.
At times she found it hard to smile
when the long day was done.
But grace…had touched her heart today
through the words of her young son.
God still performs miracles
ff every shape and size
.
But sometimes the miraculous
lies right before our eyes.

Does Stephanie’s poem give you eyes to see the miracles–Christmas, special needs, and otherwise–right before your eyes? If so, give your miracles a shout out in the comment box.

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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.

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Out of the Box Special Needs Christmas Gifts

Out of the Box Special Needs Christmas Gifts

Out of the Box Special Needs Christmas Gifts

Finding the right Christmas gift for a child with special needs can be a challenge. In this post, guest blogger Kimberly Drew encourages parents to think outside the box before Christmas arrives.

How to Think Outside the Christmas Box

I don’t know about you, but I have found shopping for Christmas presents for our daughter with disabilities to be extremely challenging. There were several years where I had done all of my shopping for our other children, relatives, and even friends and had still not spent a penny on Abbey. I hate to admit that I still have a gift from last Christmas up in our closet that she has never even taken out of the box. Over the years there were a few toys that she actually liked, but for the most part things just get thrown around and broken. It seems like money just wasted. Looking back, I wish I had realized sooner that for Abbey, an experience is a much better gift than something she can unwrap.

For birthdays and holidays, I always get Abbey a few things that she needs. Usually clothes, socks, bibs, and the like. But then when it came to that “special gift,” I never knew what to buy. Around our daughter’s ninth birthday, a friend asked if we would be interested in giving Abbey a riding lesson as her birthday gift. What was meant to be a one-time experience has turned into a beloved hobby and therapy.

It’s amazing the things you can find to go along with a hobby like this! A helmet, riding pants, boots, and the list goes on. We were unable to afford this therapy on our own, and have asked in recent years for family members to chip in toward a gift certificate. They got creative about how to wrap it up. Abbey’s Aunt Diane used the logo from the riding center’s website to print out coupons. When Abbey went to her next session, she handed in her coupon with GREAT joy!  Many times our entire family goes to her therapy and sits on bleachers to cheer her on. She has perfected her wave while maintaining her balance on the horse, and especially loves to look at herself in the mirror along the wall of the arena. These moments are precious to me, and she loves every one of them!

When you grasp that the years with these precious children are uncertain, suddenly making memories together seems priceless. This Christmas, I’m reminding myself and all of you to re-evaluate what is important when it comes to gift giving. Is there a family experience your child might enjoy being a part of? Does your child have a hobby or place that they like to go that is just for them? Have you been afraid to try something new, like a dance class, because of your child’s disability?  This year, why not think outside the box and give it a whirl?

How Do You Think Outside the Box at Christmas?

How have you thought outside the box to come up with a just right Christmas present for your child? Leave a comment to help other parents climb out of the box, too.

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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Special Needs Holiday Lesson 3: Boundaries

Special Needs Holiday Lesson 3: Boundaries

Special Needs Holiday Lesson 3: Boundaries

Guest blogger Rebekah Benimoff is back with the final installment about what families of kids with special needs can do to make the holiday season enjoyable and meaningful. In today’s post, Rebekah describes how she sets boundaries to meet the needs of her family and honor their faith.

Special Needs Holiday Lesson 3: Boundaries

While many people are running from event to event this time of year, due to the crowds, we don’t. This has multi-level perks. First, my husband, who has PTSD, my younger son, who has SPD (Sensory Processing Disorder), and even my older son, who has type one diabetes and digestive issues are each (much) less anxious. Tyler’s blood glucose levels are even more stable, due to lower stress and fewer food differences when we simply do less.

Second, it brings opportunities for us to bond as a family unit. While everyone else is chatting with long lost Great Uncle Charlie, I am getting to know how my sons are changing as they grow up. There is an intimacy that develops when we opt out of larger gatherings. And I’ve found that I need quiet times as well, if I am going to ever find Peace On Earth.

There are still family expectations, and we do travel to see my husband’s family and mine. But I have stopped trying to please an entire community of people by sacrificing the well being of those I am called to care for.  We place boundaries that allow us to meet each of our needs, including my own.

When we do choose to attend a gathering, I plan options to get away if needed, I bring alternative food choices with us, and I work to maintain boundaries that we have carefully set up over the years. It’s not perfect, and it may not make everyone happy, but when I release the need to please and focus on caring for those God has entrusted to me, I can actually enjoy the holidays—and even our many differences.

How do you set appropriate boundaries for your family during the holiday season? Leave a comment.

Special Needs Holiday Lesson: Part 1
Special Needs Holiday Lesson: Part 2

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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).

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