Special Needs Sacrifice? Not So Much

Special Needs Sacrifice? Not So Much

by | Oct 2, 2014 | Different Dream, Encouragement, Spiritual Support

Special Needs Sacrifice? Not So Much

Hello, Different Dream readers. Would you join me in welcoming Brittany Miller as a new guest blogger? She’s mom to three daughters: Audrey, Brooke, and Juliette. Brooke was diagnosed with Aicardi Syndrome when she was five weeks old. Brittany introduces herself with this post about the special needs sacrifices she hasn’t made raising Brooke and her sisters.

The Life you Gain, Not the Special Needs Sacrifices

Sacrifice.

You have all heard the word. In other words,
giving up,
giving in,
sacrificing,
and devotion;
all such serious proclamations of who we are as special needs parents. Everyone I meet comments about how wonderful I am because I sacrifice SO much of myself to raise my special needs daughter. It is like instantly they feel obligated to glorify my job as the Mother. You all know what I mean.

Insert chuckle here.

Meanwhile, today is any normal day in the life of a special needs mom for me, not anything unique or special about it. While the comment is well intended and I am touched by their praise, the word sacrifice or giving up so much has always bothered me. Giving up just doesn’t do justice to the world of wonder I have gained as a special needs mother, and a typical mother. Because of these miracle children bestowed to me, I get to see life with a clearer, more purposeful view, I get to cherish the little moments and glory in the milestones. No matter how small! While life is about giving of yourself to your children, I want to focus now on what I have gained.

  • Everything is so exciting! Even the smallest little milestone is cause for a party, and our whole family gathers round to relish in the news. When my special needs daughter first learned to laugh it was the talk of the neighborhood for several weeks after.
  • Family time is meaningful. When you recognize your time may be limited, spending time together really does matter.
  • You become the most knowledgeable you ever have been. Since becoming Brooke’s mom I have learned a wealth of knowledge about how the brain works, sensory issues, medical terms, medications, therapies, doctor specialties, medical equipment, state programs, nursing, caregiving…the list goes on. I feel like a nurse, doctor, mother, teacher, caregiver, advocate rolled into one complex woman. It is overwhelming but also empowering.
  • You gain a family. This one is dear to me, since being initiated into this special world, we have met and connected with incredible people. Parents who are examples to me daily. Who fight for their children, love them deeply, and show us that happiness is possible when raising a special needs child. Therapists and teachers who have a special love and devotion to our amazing children, we could not raise our kids without them!
  • You can help others. I love being on the other end now, the mother who can give advice to the newly diagnosed family. I am so happy to be able to give back, give comfort, and advice on what to do when this new life is confronting them. We have all been that shocked mother. As time goes on we can find joy in this calling and help others do the same. This is a priceless gift.
  • We get a little piece of heaven in our home every day. Not many families can truly say that. The sweet innocence of special needs children is that they are perfect. The spirit of love is ever present and it has changed our family for the better.
  • Children with special needs create compassion in parents. Suddenly the fears you once had about others who are different, you get to see in a new light. Having a child with special needs helps me see the world in a more beautiful view, to celebrate and not fear others with disabilities.
  • Having a child with special needs molds typical siblings into amazing, compassionate people. Seeing the maturity and selflessness that comes when your other children serve their special needs sibling is like no other miracle in the world… enough said here.
  • You truly find out what you are made of. Being a parent of a child with disabilities is no easy task. It pushes us to our limits, takes us places we never wanted to be in. We learn, adapt and grow in this experience in ways we could not do otherwise. I have always said being a special needs parent is the most amazing club I never wanted to be a part of but am in for the lifetime membership.

Truly, I could go on for days about the benefits I have gained being Brooke’s mother. It is about sacrifice but more about blessings.
Sacrifice,
giving up,
giving in,
devotion…
yes.
The reality is, that is part of the deal. More importantly, let us all focus more intently on the life we have gained, not given up. Sometimes, if you let it, you can feel like you have hit the heavenly jackpot–even when it is hard.

Children remind us to treasure the smallest of gifts, even in the most difficult times.
~ Allen Klein

Your Gains and Special Needs Sacrifices?

What have you gained on your parenting journey. What special needs sacrifices have you made? Tell us about them in the comment box. 

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Brittany Miller is mom to three daughters: Audrey, Brooke, and Juliette. Brooke was diagnosed with Aicardi Syndrome when she was five weeks old. Visit her at her facebook page to learn more about life with Brookie the Brave.

Author Jolene Philo

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Special Needs Answers to “How Are You?”

Special Needs Answers to “How Are You?”

by | Sep 24, 2014 | Different Dream, Grief, Spiritual Support

Special Needs Answers to “How Are You?”

Photo Credit: stock photos at www.freedigitalphotos.net

Guest blogger Maggi Gale knows that responding to pleasantries like “How are you?” can be a minefield for parents of kids with special needs. In today’s post, she offers advice to friends who glibly ask that question, among others, of parents dealing with a child’s special needs diagnosis.

The Special Needs Answers

“How are you?”

“Fine thanks, and you?”

“Fine!”

How I hated those superficial run-ins at the supermarket.

Hidden Special Needs Answers

Do you really want to know how I am?

Scared. Will my daughter ever come out of this cycle of sickness, brief recovery, followed by more sickness?

Tired. I lie down exhausted, tense, waiting for the night cough. And it comes. I long for rest as a thirsty person longs for a drink of cool water.

Confused. My head feels as fuzzy as the insides of a cushion. I cannot start a thought and follow it through to completion without losing my thread.

Insightful Special Needs Answers

And you? How are you, behind that smile?

Worried. That I might open up, and you won’t have the right answers. Don’t worry–there aren’t any.

Uncomfortable. Because you don’t know my territory. You don’t need to–no one expects it of you.

Busy. That’s okay–really. But if that’s the case next time, greet me with “Hello” rather than “How are you?” My answers to that question are not for you.

Sacrificial Special Needs Answers

During this time in my life, I was given a friend who would ask me how I was doing, and could handle my answers. She was faithful in calling me. And if I wasn’t doing well, she would just call again the following day. If she thought my view of life was sometimes distorted, she wasn’t afraid to tell me, but mostly, she just listened. She was prepared to walk with me through this bewildering journey, for as long as it took. Her friendship and listening ear gave me so much courage.

How could another young mum be so sensitive to my pain ? By God’s grace, of course, but also through her own tragedy. She had lost a toddler son through a horrific accident. She could have drowned in grief and self pity after that accident. But instead, through her own suffering, she became more sensitive to the hurts of others.

God, grant that through our own suffering, we too might become more sensitive to the pain of others. May we become listening, faithful friends to those around us. And may we ask “How are you?” ready to hear the answer, whatever it might be.

What Are Your Special Needs Answers?

How do you handle situations like the one Maggi describes? Who has been willing to listen to your real answer? We’d love to hear you story in the comment box.

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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

Author Jolene Philo

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Siblings and Special Needs: Windows to the Heart

Siblings and Special Needs: Windows to the Heart

by | Sep 17, 2014 | Different Dream, Grief, Spiritual Support

Siblings and Special Needs: Windows to the Heart

 Noah holding a picture of him and his little brother Evan.

Today it’s my pleasure to welcome guest blogger Scott Newport back to Different Dream. He’s here to talk about the work he continues to do on behalf of families raising kids with special needs. In this post, he describes the positive effect his son Evan’s short life had on his brother, Noah, many years after Evan, who lived with Noonan’s Syndrome, went home to Jesus.

Windows
By Scott Newport, proud dad

We had been transferred from the Pediatric Intensive Care Unit (PICU) to a little four bed ward for sick children whose life depended on a breathing machine. Our family had lived in the hospital for eleven months and we were one step closer to taking Evan home where he would be able to die in the arms of those closest to him.

“Kids like Evan usually don’t live past the age of two,” was the agreed diagnosis by the staff.

Siblings and Special Needs: A Window into the Past

Noah, Evan’s big brother had just turned five and the University of Michigan’s C. S. Mott Children’s Hospital was kind enough to let us celebrate his birthday in the family resource center on the top floor. Since we had graduated from the PICU we were able to see some of the other sick but somewhat stable kids up and moving about.

“Hey, guys my name is Mike. Is it okay if I come in?”

Mike looked to be about seven years old and a nurse was toting him around the 5th floor. He was pretty much bandaged from head to toe on the right side and we learned later his mom was in jail for pouring scolding water all over him. For some unknown reason he wanted to visit our particular ward that day. The room was neatly packed with four kids on ventilators, two nurses, one respiratory therapist, and four matching machines pulsing to the sound of life.

Mike seemed to know his way around and the staff was trying to fill in as his only family. I could tell he had been there awhile and seemed to be a seasoned veteran.

Within a few days we got used to Mike stopping by and soon discovered Noah and I could go to his room and take him for a lap around the floor in his wheel chair that is, after we stood by and coached him during daily bandage change. I guess we were his reward if he could get through the excoriating pain of having the encrusted gauze ripped form his tender skin.

Noah seemed to really like Mike, often challenging him to a race. I would push Mike and Noah would run like crazy. We would start at the busy nurse’s station. Noah would take off to the right, and Mike and I would go to the left. The fifth floor was lined with rooms in the shape of a square. Who ever tagged the desk first was the winner. It’s kind of funny as I think back now because many times we never finished the race. You see, many of Evan’s doctors would see Noah running and would often stop him for a high five and a little chat.

One day I sat with Evan in my arms, making sure I was carful not to pull any wire or hoses from his body. I watched through the door as Mike and Noah exchanged jokes out in the hall. In that moment it was like looking through a special window. The window allowed me to take a peak what the future may look like for Noah. Noah would surely be a great big brother and no matter how sick or disabled someone may be I was confident he would protect them and honor them as any other human being.

Siblings and Special Needs: A Window into the Present

This past year Noah finished the eighth grade and is now fourteen years old. About a month ago we received a letter in the mail about a community Rising Star Award. At the banquet we discovered he was nominated by his eighth grade English teacher. The award was for local children overcoming adversity. Noah said later on the ride home, “I guess I got this because of Evan.” Penni and I both nodded.

The following week at the middle school graduation, his name was called again for the Royal Oak Middle School Caring Award. The principle said. “Noah is always willing to help the other kids around him and often heard saying, ‘One day I will be a doctor and will find a cure for the disease that took my brother three years ago.’”

At the graduation while sitting back that special window opened again, just like when I watched him and Mike all those years ago. I couldn’t be prouder of Noah. Even though the pain of losing a son and a brother will never go away I am comforted by knowing Evan’s life did matter and Noah is the proof of that.

Siblings and Special Needs: A Window into the Heart

Just this last week C.S. Mott Children’s Hospital had their first ever Sibling Award ceremony inspired by the story above. And as you may have guessed it is called The Windows Award.  The tag line is “Viewing siblings through the framework of our Mott kids.” I made three windows for the occasion and a photographer took pictures with the kids looking through the frames.

This was just another way to remind me Evan’s life did and still does have meaning; an inspiration I need and something for all the brothers and sisters like Noah to help keep them succeeding even with in the most difficult times of their young lives.

Siblings and Special Needs Shout Out

Want to brag about the siblings of your child with special needs? Now’s your chance to leave a shout out in the comments box. I can’t wait to hear about your kids!

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Scott Newport is a carpenter who has a vision for unwanted, damaged wood. His finds are treasures to his soul. Each discovery he makes unfolds into a beautiful piece of furniture for which he finds a home, usually with a child or caregiver of a child with special needs. He writes about the life lessons he learns from his 3 children, especially from Evan who died in November of 2009 after 7 years of joyful life. To access all of Scott’s guest posts, click on the magnifying glass at the top of the page and type “Scott Newport” in the search box.

Author Jolene Philo

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Build Upon Strength Instead of Weakness

Build Upon Strength Instead of Weakness

by | Aug 28, 2014 | Different Dream, Encouragement, Spiritual Support

Build Upon Strength Instead of Weakness

If only I had read this book early in my teaching career.

That was my thought as I turned the last page of Kristine Barnett’s book, The Spark: A Mother’s Story of Nurturing, Genius, and Autism. Her tale of her two-year-old son’s autism diagnosis, his downhill slide into silence, and her decision to build upon strength in him rather than always remediating his weaknesses resonated with me.

Granted, Barnett’s son Jake had amazing strengths to build upon. Now fourteen, he’s verbal, well-socialized, and in graduate school. Yes, graduate school. Studying physics and solving math problems thought unsolvable (think Good Will Hunting) thanks to an IQ higher than Einstein’s.

But his mom didn’t know that when he was three, uncommunicative, and displaying classic symptoms of autism.  She was firing a shot in the dark when she decided to give him time to build strength. She gave him time to explore his passions, which at the time were stars, light and shadows, stringing yarn around the house in strange patterns, and dumping the contents of cereal boxes on the floor.

The lesson to be found in this story is not to pull our kids with special needs out of therapy. The lesson is not for parents to allow kids to stare blankly at lights and shadows. The lesson is not that we should look the other way when our kids throw cereal on the floor.

The lesson is for parents to look for our children’s passions and to give them time to build strength by pursuing those passions.

I didn’t learn that lesson in time use it in my classroom. But, God has granted me time to pass it along to you, along with a few tips about how to build strength in your kids with special needs.

The remainder of this post 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.

Photo by Ben White on Unsplash

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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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Special Needs Fear: Don’t Let It Steal the Gift

Special Needs Fear: Don’t Let It Steal the Gift

by | Aug 14, 2014 | Different Dream, Encouragement, Spiritual Support

Special Needs Fear: Don’t Let It Steal the Gift

Today it’s my pleasure to welcome a dad as today’s guest blogger at Different Dream. Jeff Davidson and his wife Becky are parent to Jon Alex, their son who lives with significant disabilities. Jeff is well acquainted with the special needs fear that descends on many parents. But he’s here to encourage you to stay strong without allowing special needs fear to steal God’s gifts.

Special Needs Fear: Don’t Let It Steal the Gift

 “What if he has an autistic moment in the middle of the store and people stare?”

“What if his vocal stimming and rocking in his chair disrupts the others?”

“What if it’s crowded and I’m trying to push a wheelchair and a shopping cart at the same time?”

“What if all the handicapped parking places are already taken?”

My wife was debating whether to engage in a game of Walmart Roulette with our son.

Normally she tries to avoid places like Walmart when she has our son with profound special needs accompanying her. But this time, the items she needed required a trip to the superstore here in our small town.

Fear was whispering in her ear though, and doubts were slipping in through the unlocked door to her heart. Taking a child with autism and cerebral palsy into such an environment would require staring down the coward within.

Navigating my son’s wheelchair and a shopping cart simultaneously with the skill of a NASCAR driver, she made her way down the narrow, packed aisles.

That’s when she saw them.

Two developmentally disabled young adults, with their caregivers, were in the produce department.

As she passed by, one of the young men began to demonstrably wave and gesture towards her. He approached her and my son, trying to communicate.

Garbled, nonsensical words and sounds gushed forth as the young man gesticulated wildly. His caregiver approached him from behind, and tried to explain and apologize.

My wife waved the caregiver off at the pass and flashed him an “It’s okay, I’m safe” motion. For the next couple of moments she engaged and interacted with this intellectually challenged young man as if they were life-long friends.

“He is trying to tell you he likes fireworks, and wants to know if your son likes fireworks as well,” explained the caregiver, pointing to my own teenage son in his wheelchair.

Soon Becky moved on to finish her shopping and waited in one of the checkout lines. As she moved steadily closer to the Holy Grail of finally paying for her items and exiting the store, a moment ordained in heaven unfurled right at the counter.

The challenged young man and his caregiver were across the aisle from her, checking out with a different cashier. The young man made eye contact with Becky and began to wave.

As she waved back and flashed him that dazzling smile I first noticed 24 years ago, he left his caregiver’s side and walked over to where Becky and Jon Alex were.

He stopped right in front of my wife and gave her a big, yet tender hug, gingerly wrapping his arms around her and just holding her for a second.

No doubt the moment had been God-breathed, God-inspired, and God-ordained. Sitting in the car, tears in her eyes, Becky thanked God for that holy moment.

A moment where fear was trounced, the coward within defeated, and where grace was allowed to not only abound, but to triumphantly be displayed.

“I needed that moment,” she would tell me later. “That was God’s gift to me. If I had let the fear win, I would have missed something beautiful.”

She did need that moment. But she was only partly right.

We all needed that moment.

The young man needed it. His caregiver needed it. The cashier needed it. Everyone in the store who witnessed the encounter needed it.

That was God’s gift to all of us.

Because that is what God does. He takes broken vessels and he creates beautiful gifts that he uses to reveal himself to us. God creates nothing but masterpieces.

Sometimes, you’ll find a masterpiece, even at Walmart.

Your Special Needs Fears?

Jeff and Becky feared taking their child out in public. How about you? What are your special needs fears? How have you overcome them so it wouldn’t steal the gifts God has given your family? Leave a comment in the box if you like. You can also connect with Jeff at Facebook, on Twitter at @ramjeffdavidson, and at Rising Above Ministries.

 

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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Jeff Davidson is the founder and CEO of Rising Above Ministries. He and his wife Becky started Rising Above when they realized the incredible gift and blessing their own son with special needs was to them. Jeff feels he was chosen to be the dad of a child with special needs, and then called to be an ambassador or missionary to the special needs community. Jeff is an author and speaker who enjoys speaking at churches, conferences, events and to groups, ministering to special needs families and individuals. He blogs regularly at jeffdavidson.me and is a contributing writer at comfortinthemidstofchaos.com. He is also the special needs team member/writer at 1corinthians13parenting.com. His first book, No More Peanut Butter Sandwiches: a father, a son with special needs, and their journey with God is being released in August of 2014.

Editor’s note: Jeff Davidson died unexpectedly in the spring of 2017. His wife, Becky, is carrying on his legacy at Rising Above and other special needs organizations.

Author Jolene Philo

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Special Needs Diagnosis: Letter to a New Mom

Special Needs Diagnosis: Letter to a New Mom

by | Aug 7, 2014 | Different Dream, Encouragement, Spiritual Support

Special Needs Diagnosis: Letter to a New Mom

 Photo Credit: Siri Anamwong at www.freedigitalphotos.net

Parents of kids with special needs remember that the moment their child received a special needs diagnosis. They know it’s a moment like none other. Life changing. Paradigm shifting. But, as guest blogger Ellen Stumbo says today, it’s also a moment of hope and possibility.

Dear Mom Dealing With Your Child’s Special Needs Diagnosis

I’ve been where you are, facing a scary unknown for my child. Nothing, nothing compares to the thick net of overpowering emotions that capture you as you deal with your child’s new diagnosis. Even if you suspected it.

I was pregnant with my youngest daughter when a level 2 ultrasound showed significant markers for Down syndrome. That happened a few days after I’d had a dream that my baby would be born with Down syndrome. We did not receive a definite diagnosis, but we knew it was a strong possibility. And yet, her birth is marred by the tears, the sadness, the anguish, the fear. Fear of the unknown.

What does her diagnosis mean to her?
To our family?
Will our family now be covered with limitations?
How will this diagnosis affect sibling relationships?
What will her future look like?
What about mine?
Will she live with us forever?
Will she ever have a job?
And why me?
Why me?
There has to be a mistake, we cannot be one of those families that have kids with disabilities!

The pediatrician didn’t help. My midwife crying didn’t help. Hearing people say “I’m sorry,” at least, to us, didn’t help. The message we seemed to hear from other people was, “This is bad, this is really, really bad.” And we had enough fear on our own, we didn’t need more fuel to the fire.

I don’t know the circumstances of how you found out about your child’s diagnosis, or if you are pregnant, if your child is an infant, a toddler, or a little older, but I suspect you might be wrestling with feelings and thoughts similar to mine. And it’s scary, it’s more than you can handle, it feels as if a vacuum sucked up all the happiness away from you. A nightmare becoming a reality.

I will not tell you that parenting a child with a special needs diagnosis is the same as parenting a typical child; it’s not. I won’t tell you that parenting a child with a special needs diagnosis is easy; it’s not (parenting never is). I won’t tell you that the challenges in raising a child with a disability are easy; they’re not. Parenting children with special needs does require a little more, and sometimes a lot more, depending on your child’s needs. But although this new life will be different, this is what I want you to know:

No doctor, no professional, no specialist can tell you what your everyday life will be like. Their expertise is limited to the medical field. Remember, a doctor sees the medical issues and emergencies, they only get to see a family in crisis or sickness or maintenance, they get to experience the worst case medical scenario. And while your child might face some medical issues now or in the future, your child is so much more than his/her medical diagnosis. Let me say that again, your child is so much more than his/her medical diagnosis.

Your child is, first of all, your child.
Your child will have gifts,
talents,
abilities,
a sense of humor,
a personality of their own,
a favorite color,
a love for certain type of music,
a favorite toy.
They will be a person, their very own person, just like you and just like me.
An individual made up of so much more than a diagnosis.

I know the diagnosis feels so big right now, but it won’t always be that way. It will get better. You will peel the sadness away, layer by layer. The lost dreams will be replaced with new dreams. Yes, you will have new dreams for your child! Your child will open up a world to you that will surprise you, it will be better than you imagined it would be. Your child will enrich your life, and the life of his/her siblings too.

See, unless someone else has walked in your shoes, nobody can tell you about
the smiles,
the celebration,
the joy,
the abundance of love.
But I’ve been where you are,
and I can tell you the light will come,
joy will show up,
love will take over.
This fierce, deep, strong love.

Besides, nobody can tell you what your child’s sense of humor will be, or how his laugh will be deep and strong and make you laugh too.

Before my daughter was born, I really didn’t know much about Down syndrome, but the truth is I really didn’t know much about her either. I didn’t know that she would love to get in bed with me on Saturday mornings as we sip decaf coffee together. I didn’t know that she would love to dance to classical music. I didn’t know that she would fill my love tank with her hugs and love. I didn’t know that she would surprise her classmates in Kindergarten by reading their names. I didn’t know that she would teach us what celebration feels and looks like. Before her, I didn’t know that life could be so full. She changed me.

And I want to leave you with a sentiment that has become dear to me, because I have found this to be true in the special needs journey… And you will my friend.

You will experience shades of color that you never knew were possible.

You will!

What Would You Say to a Family Receiving a Special Needs Diagnosis?

Would you like to add a post script to Ellen’s letter? You can leave it in the comment box. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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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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