Special or Sad Holidays for Kids with Disabilities?

Special or Sad Holidays for Kids with Disabilities?

Special or Sad Holidays for Kids with Disabilities?

Special or sad? That’s the question guest blogger Brittany Miller asks as the holiday season swings into full gear. In today’s post, she answers her own question with ideas she uses to keep from letting her daughter’s special needs make her too sad at this time of year.

Special or Sad Holidays for Kids with Disabilities?

Fall is in full swing, and every holiday from Halloween to New Year’s has been displayed in stores in all their grandeur. I love it, I admit it. My hands twitch at the prospect of adding fun holiday events and parties to our calendar. I start decorating and my house looks like a cluttered, happy holiday mess exploded inside. My kids love it, I love it, and there is just a special feeling in the air. Cheesy but it is a true fact in our household. We love the holiday season. But, sometimes at the very back of all of this joy and thanksgiving is the sadness that we special needs parents tend to compartmentalize. Our Christmases are often numbered, and for our disabled children, the presents and gifts given can often make their disabilities all too apparent. You know what I am talking about.

While grateful, we often dread the slew of ridiculous amounts of clothing as well as developmentally inappropriate toys that are often given to our special needs kids. And the stuffed animals! My little Brooke has over 100. Good intentions, sure, but where do we store all of those cuddly mementos that she cannot even play with? Clearly we appreciate the generosity for the kind gestures, but giving a school age child a baby rattle has a way of putting things into a harsh light. Christmas can be hard. The reminders that things are so different, that our special needs children will never have a normal Christmas. can often let those tender feelings of sadness and loss creep up during a time that should be full of making merry memories.

Special or Sad Memories?

So what can we do? How can we experience the holidays with our families and focus on the joyous blessings we do have without letting the sadness get in the way? Honestly, we cannot make those tender moments completely disappear, as they are part of the grief cycle we go through as special needs parents. However, we can focus on the joy they bring to our lives. They are here now. We can make wonderful, tender memories that are even more precious because we know these seasons are numbered. It may seem sad to recognize or admit, still I need this reminder because it helps our family focus on cherishing our time together. Let’s be honest, our children have a way of bringing a sweet spirit to our homes every day of the year, and the holiday season their preciousness is magnified.

One of my favorite holiday memories was made last year, holiday season 2013. We took our girls to North Pole Experience in Flagstaff, Arizona. My youngest and our special sweetie, Brooke (4), was chosen by NPX to be an Honorary Elf. She is globally delayed, has Aicardi Syndrome, epilepsy and is visually impaired. She was anonymously nominated through social media by a special person who was touched by her sweet smile and story. We received this special weekend as a gift from North Pole Experience. Despite Brookie’s disabilities and her inability to walk, talk, or participate in all of the weekend activities, the joyous smile on her face when she met Santa was all we needed to know she was happy. It was a Christmas to remember.

Special or Sad Gifts?

Friends, fellow parents, our children do not need a mountain of gifts or sweets and candies, they need love. They spread that love and touch those they come in contact with in such a miraculous way. The reality is, that is a precious gift, something real and magical. This busy, oh so wonderful holiday season can be joyous, we just have to let it. Sure, times for tears may come, but please do yourself a great service and let them be happy ones. These wise little souls may not dive under the tree, looking for presents, or join in on all of the fun festivities this wonderful time of year has to offer… but those moments are not the most precious ones of the season. And we all know it.

This year, this time of year make a promise to yourself to be together, be happy, be joyful, be present, and try not to be sad. (And maybe give your well meaning friends and family a few appropriate gift ideas for your special sweetie, lest you be overloaded with rattles and stuffed bears.) The holidays are a time for happiness, togetherness, and love. And guess what, our children can do all of these things! I pray we all can have a special holiday season and make many happy memories… a different season… maybe, and that is okay with me.

Special or Sad Holidays for You?

Are the holidays special or sad for you? How do you deal with that sadness? What do you do to stay positive? Leave a comment in the box below. And check out more of Brittany’s special needs journey at her blog, www.brookiethebrave.com.

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.

By

Brittany Miller is mom to three daughters: Audrey, Brooke, and Juliette. Brooke was diagnosed with Aicardi Syndrome when she was five weeks old.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Happy Special Needs Fourth of July!

Happy Special Needs Fourth of July!

Happy Special Needs Fourth of July!

 Photo Credit: nuttakit at www.freedigitalphotos.net

Guest blogger Kimberly Drew has learned a few things over the years about how to create a happy special needs Fourth of July for her daughter, Abbey, who lives with multiple special needs. Today, she offers three tips about how to craft good special needs fourth of July memories for the entire family.

Happy Special Needs Fourth of July!

I grew up in a small town and state where it is legal to buy and set off fireworks. Every year we had a cookout and then went to a neighboring town for a Fourth of July fireworks show. We followed up that show with sparklers and small fireworks to do as a family at home. I loved it! After a long night of celebration, we would collapse into bed and sleep in the next day. When I became a mom, this was a holiday I couldn’t wait to celebrate with my own children. It’s funny how something that seems so simple can turn into such a hurdle when you have a child with multiple disabilities.

Special Needs Fourth of July Tip #1

For starters, cookouts can be a nightmare for a child with chewing and swallowing problems. Abbey once had to have emergency surgery because she helped herself to a slice of watermelon at a friend’s house. Don’t even get me started on hot dogs and chips! Now we bring “Abbey safe” food with us wherever we go. Parents with children with food allergies understand this as well. The last way you want to spend your holiday is in an emergency room with worry and question weighing on your heart.

Special Needs Fourth of July Tip #2

If we can get past the cookout, we have to get through the fireworks show. A lot of children are extremely sensitive to the loud noises associated with a fireworks production. That doesn’t mean you have to skip the show, but it does mean you have to do some research about where you can park your car, or sit as a family that is far enough away to see the show without the big booms. The first few times we tried fireworks with Abbey she was terrified. We watched one year from the car, and now that she is older she loves them. This is true for a lot of kids. It’s nice to know some things they will outgrow!

Special Needs Fourth of July Tip #3

Last, we had to let go of fireworks at home. The last thing I need is a burn from a sparkler or an accidental fly away that she doesn’t have the reflexes to avoid! This was a happy memory for me, so I felt a little sad that we wouldn’t get to continue this tradition, but over time you learn to let go of the less important traditions in order to preserve the big ones. It helps that we eventually moved to a state where fireworks are illegal anyway. But if you are in a neighborhood like the one I grew up in, maybe you can just drive a little further away for the fireworks show so that your kiddos are too tired to think about it when they get home?

The good news is this: Holidays are going to look a little different in your house, but they can still be celebrated! Don’t stay home this Fourth of July!

Your Special Needs Fourth of July Tips

How does your family make a happy special needs Fourth of July for your family? Leave your ideas 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.

By

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Happy Father’s Day to Special Needs Dads

Happy Father’s Day to Special Needs Dads

Happy Father’s Day to Special Needs Dads

Father’s Day will be here on Sunday, so guest blogger Stephanie Ballard stopped by today to deliver a poem to honor dads of kids with special needs. Enjoy her words, and as is often the case with Steph’s writing, have a tissue handy.

A Father’s Heart on Father’s Day

A man walks through the double doors
His eyes tell quite a story
Although he has grown weary
He still gives God the glory.
His child lives within these walls
As many children do
Look high up on the sign, you’ll see
That it says…ICU.

The nurses nod as he walks in
And sets down all his things
Although he knows what to expect,
Somehow it always stings.
He bends to kiss his sleeping child
His hands stroking soft hair
And everyday the nurse can hear
This tired father’s prayer.

Lord, please watch my child today
And let him know you’re here
Give him strength so he can fight
And calm his every fear.
Wrap your arms around him
The way I wish I could.
Remind him just how much he’s loved
Remind him life is good.

I feel so very helpless
Not sure what I can do
I cannot even comprehend
The things that he’s been through.
Give me strength to fight for him
And help me understand
Help me to accept your will
No matter what the plan.
Lord, I know you’ll answer me
And yes, I know you care
Thanks again for hearing
One father’s heartfelt prayer.

If someone stopped to ask him
Are things going all right?
He’d feel no need to mention
He didn’t sleep all night.
If we were given just a glimpse
If we could see in part
What thoughts and hopes are there to find
Within this father’s heart?

A father’s voice…

My child was born fragile
Its my job to be strong
And tell my wife things will be fine
(And pray that I’m not wrong)
And still the bills need to get paid
And things need to be done
And it’s so hard just sitting here…
I want to hold my son!

I lean down as I watch him breathe
Keep fighting is my plea
I thought I’d teach you to be brave
But son, you have taught me.
I hear the beeping of machines
That help my child to live.
I wish that I could take his place.
There’s nothing that I wouldn’t give
To have the faith and strength I need
To hold back all my tears.
To say “I know he’ll be okay,”
Despite all of my fears.

I’ll only lose composure
When no one’s here to see
I will be the strong one
As I’m supposed to be.
A daddy says, “Come to my arms
I’ll chase all those monster’s away”
I cannot change God’s plan for him
But I can hope and pray.

A daddy needs to cry sometimes,
And God must see right through,
That tough daddy exterior…
For He’s a daddy too.

~Stephanie Ballard

Father’s Day Shout Out Time

Steph’s poem is a shout out to her husband. Now it’s your turn. Please feel free to leave a shout out in the comment box for the special needs father in your child’s life this Father’s Day.

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.

By

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Autism Journey: One Dad’s Reflection

Autism Journey: One Dad’s Reflection

Autism Journey: One Dad’s Reflection

 Photo Credit: Sira Anamwong at freedigitalphotos.net

With Father’s Day arriving in a few days, I’m pleased to introduce today’s guest blogger, Tim Dahlin. We have known his family for more than two decades and watched their story unfold. Tim’s story is a touching reminder of how special needs changes and enriches the parenting journey.

Autism Journey: One Dad’s Reflection

I am a dad of a son with autism. Now no longer the baby we brought home from the hospital or the little child we could lead along, Jonathan is an 18-year-old and 6 feet tall! And it has been a journey. Recalling that journey brings back many happy memories: memories of hiking together in the Grand Tetons, scaling Harney Peak in the Black Hills, and canoeing down the St. Croix River. I remember being called into the back yard by my son where the telescope was focused on the Orion nebula and the binoculars on the Andromeda galaxy. I remember listening when Jonathan identified the pitch of the bell that went off in our car and realizing that it was not a crazy idea to try him with piano lessons after all.

Autism Journey: Not Without Pain

Our autism journey has not been without pain. I remember together with my wife packing suitcases and crates as we prepared to move back from South America to the States and realizing that the course of our lives was being irreversibly altered.

I remember sitting in church on a Sunday morning and, as we were singing “[God] gives and He takes away” and being so moved that I went running out of the auditorium.

I remember standing by my wife and being unable to fix her pain as our dreams were shattered and the future became an unknown.

But I also remember when life seemed to come unglued and a few brothers and sisters in Christ came alongside us and ministered to us.

I remember those individuals who have reached out to Jonathan and who have become his friends.

I remember coming to the realization that, far from being a source of shame, being Jonathan’s dad is a high honor and privilege indeed.

And I remember God pouring joy into my life by the bucketful.

Autism Journey: Lessons Learned Along the Way

What have I learned on this autism journey? I have learned that clouds come in dozens of forms and I have observed myriad ways that water swirls around in a creek. I have together wondered with Jonathan whether King Hezekiah was tall or short.   I have learned that behind a puzzling exterior, that at times seems impenetrable, is a world to be discovered.

I have learned that love has many languages. I have learned that God sometimes remarkably answers prayer and that when our strength runs out, God’s grace takes over. I have learned that parenting a special needs child can make a marriage deeper and sweeter. I have learned that we need those with disabilities among us in the body of Christ, the church, and that welcoming an individual with challenges has the potential for opening up fresh channels through which God’s grace may flow.

Autism Journey: No One Is Indispensable

There are times when I am tempted to leave Jonathan home from church. Well, you know, he might say or do something embarrassing. But I try not to do so for not to include him would somehow make a statement that his presence is dispensable. Dispensable, that is a horrid word, isn’t it, when we are referring to one who is made in God’s image? Embracing and welcoming any human life may very well bring pain and inconvenience along the way. That may be especially true when we are dealing with a person with a disability. But not to welcome that person or to keep that person at a safe distance will rob us of joys we might not otherwise know. How much I would have missed were it not for Jonathan!

Your Autism Journey Reflections?

Okay, Dads, now that we heard from Tim, it’s your turn to reflect upon your autism journey or whatever special needs parenting journey you’re on. You can share your story in the comment box. Happy Father’s Day!

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.

By

Tim Dahlin and his wife Carolyn are missionaries with ReachGlobal. Tim works with an online school based in Costa Rica training leaders for churches in nineteen Spanish-speaking countries. Tim and Carolyn are currently living in Fairmont, Minnesota, where they work with a Hispanic congregation. They lived and served for a number of years in Venezuela, where their three children, Joel, Karin, and Jonathan were born. Jonathan is an avid reader and loves music. He played tuba in the band and the piano. He recently graduated from high school, and his senior piano recital was incorporated into his graduation party.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Happy Mother’s Day, Special Needs Moms!

Happy Mother’s Day, Special Needs Moms!

Happy Mother’s Day, Special Needs Moms!

Mother’s Day will be here soon. It’s a day of joy and celebration, but for moms of kids with special needs, it is often bittersweet. Our joy in our children’s progress is often tinged with lost dreams and small worries. Guest blogger Stephanie Ballard puts our feelings into words into a poem about memories of time spent with her young son conquering obstacles at the playground and how raising a child with special needs can draw mothers closer to God.

As winter’s hand faded away from the landscape, I found myself relishing the fresh afternoon sunshine while watching my son climb up the play structure at our local park. He is nearly 10, and he often struggles to find the strength in his weak hands to climb the ladder successfully. I watch other kids half his size climb the same ladder with ease, and for a moment, I am sad for him.

”Watch me, Mommy,” he yells when he reaches the top, and I smile in his direction with pride. I can appreciate these normal childhood moments, as his heart condition is a constant concern, and his energy level isn’t always that of a regular child. I remember when we brought him to this park for the first time. He was nearly 3, and I followed him around the play structure nervously, worrying that he might fall and get hurt. Since the time he was an infant, fragile, blue and weak…I have been a worried mother.

”Let him go,” my husband suggested that day so many years ago, “Let him be a kid.” And as the years passed by, I did grow more comfortable watching him venture out independently. But the worried mother will always remain. I find acceptance in this, while trying to retain a healthy balance.

I wonder sometimes if God watches us, as if we were  little children on a playground. We venture out into the world and strive to stand on our own 2 feet, while the trials of life attempt to vehemently knock us down. It is indeed these trials that strive to rob us of the essential things we need to move through life successfully. The virtues like faith, hope, and endurance can be difficult to maintain in times of uncertainty. I wonder if God is carefully keeping tabs from the sidelines, murmuring words of wisdom and encouragement. Perhaps he knows at some point we will fall, but he also knows that we will get back up with a renewed confidence and hope. I watched my son Braeden struggle and fall many times in the last nine and half years, not only on the playground, but in life. A new diagnosis, a surgery, an unexplained illness: these were all trials that made us stumble and falter. With time and reflection, (and a lot of prayer) we are still standing today. He is always there.

Playground

Running on the playground
My son took quite a fall.
He pulled himself up carefully
And then began to call…
Mommy…Mommy…Mommy
I’m hurt…I’m hurt…I’m hurt…
I run to him, he’s on the ground
His face covered in dirt.
I find him with his hands outstretched
His eyes are filled with tears,
I scoop him up and hug him as
I try to soothe his fears.

“It’s okay,” I tell him
(As mothers tend to do)
Now let’s go get you cleaned up
And get a Bandaid too.
I do not reprimand him
For leaving Mommy’s sight
I simply hold him in my arms
And whisper…”It’s all right.”

And then the thought occurred to me
That God must feel this way
When his own child is hurting
He whispers, “You okay”?
In a world where things do go wrong
In a world of struggle and hurt
I sometimes find…I’m on the ground
All covered up in dirt.
“But I can get up by myself,”
I say with just a sigh
“I’m strong enough to stand myself.”
I will not even cry.
And so I brush off all the dust
And stand, to my great boast
Why must we fall to realize
What really matters most?

And so I watch each step with care.
Can I avoid a fall?
But living life so carefully
Is not living at all.
I do not have the answers
(I may not understand)
But this I know for certain
He’s there to take my hand.
The playground of life lies before me
At times it’s hard to see
That open arms are waiting
To love and comfort me.
If I should fall tomorrow,
If I should fall today,
The one who holds eternity
He still says, “You okay”?

What Have You Learned?

Oops, I forgot to issue a tissue warning with Stephanie’s poem. Does it make you think of lessons you’ve learned while raising a child with special needs? Please share them in the comment box, or share your Mother’s Day plans. Happy Mother’s Day to all of 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.

By

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Valentine’s Day Thru Special Needs Thick & Thin

Valentine’s Day Thru Special Needs Thick & Thin

Valentine’s Day Thru Special Needs Thick & Thin

Valentines Day is here. My husband, Hiram, and I will give each other cards, but there will be no night out, no flowers, no chocolate, no bottle of wine. Just enjoying a quiet evening at home, a tradition that started in 1983.

Our First Valentine’s Day as Parents of a Child with Special Needs

That Valentine’s Day was our first as parents of a baby with medical special needs. It was also the year I understood what a loving person my husband is. Not because he purchased a beautiful card. Or a bottle of wine or flowers or chocolate. And not because he made reservations for a romantic dinner at a swanky restaurant. None of those things were possible that year. Our baby boy was fighting another bronchial infection. We were exhausted from nine months of life-saving surgeries, nine months of invasive medical procedures, nine months of trying persuade our little one to take enough nourishment to thrive, nine months of sleep deprivation, nine months of surrendering our dreams of parenthood to the reality of raising a baby born with EA/TEF.

How My Spouse Said “I Love You” that Valentine’s Day

Though we were tired and distracted, my husband said “I love you” in unforgettable ways:

  • Night after night, he slept in the recliner with our fussy baby so I could sleep.
  • Day and night, he diapered our baby and gave him bottles while I pumped breast milk, the only nourishment our little guy’s sensitive stomach tolerated.
  • Meal after meal, he shadow boxed in the kitchen to make our boy laugh so I could sneak a spoonful of baby food into his mouth.
  • Month by month, he attended emergency medical technician (EMT) training so one of us had a clue about how to handle our son’s complex medical needs.
  • Hour after hour, he patiently endured my frequent emotional rants fueled by an intense grief he didn’t understand.

This Valentine’s Day

That first Valentine’s Day is long past. Our baby is a grown man. He’s healthy and strong, and father of two of our adorable grandchildren. Even so, the acts of love performed by my husband 31 years ago are fresh and clear. When I look at my husband—a little grayer, a little balder, a little more wrinkled than he was 3 decades ago—I see a young father rocking a fussy baby and patting his tiny bottom. I see a young husband faithfully standing beside his hormonal, emotional wife. I see a quiet man who was tested by special needs parenting fire and proved true. I see the man I want to spend quiet Valentine’s Day evenings with as long as we both shall live.

Your Special Needs Valentine’s Day?

How has your spouse said “I love you” through special needs thick and thin? Give him or her a well-deserved shout out in the comment box. Happy Valentine’s Day!

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

By

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 and will be released in June of 2022.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts