A (special-needs) Father's Day Reflection

Today being Father's Day, our house was probably like many others. I was awakened by two little girls with a gleam in their eyes as they wished me a Happy Father's Day. Soon to be followed by presents and many hugs and kisses. A special song was even sung to me by my youngest daughter, Amelia, as my oldest daughter, Olivia, strummed a play guitar. Morning turned to afternoon and I was off to work. Olivia kissed me goodbye and as she hugged me, there were tears streaming down her cheeks just because I was leaving.

As I drove to work I thought about my father who I recently lost in March. I thought about how he was always there for support or just to talk things over with. Then my thoughts switched to Olivia and her special-needs. I thought about how far she has come and how far she still has to go.  I thought about how much she needs her mother and I and what would happen to her if we weren't here.

It was almost eight years ago when I became a first time father. Although I was older than most first time fathers, I was still nervous and a little apprehensive. I also knew it would be a life changing event.  
        Little did I know how life changing it would be.

Less than twenty four hours after Olivia came into this world I was told that she had a stroke prior to birth. My knees went weak and my life was forever changed. After breaking this devastating news to my wife, who was in a hospital 40 miles away, we learned of the extent of the damage and the limits the the future might hold for her. We soon entered a world unknown to us. A world of doctors and therapists, educators and aides. From this specialist to that specialist to physical therapy to occupational therapy to speech therapy to Easter Seals and back, we soon had a team surrounding our little Olivia that had her best interest at hand. 

Behind every good father there is a great wife and mother. As a father I am thankful for my wife Anna. She has made it her mission to help Olivia be the best that she can be. And her mission has become our family's mission. One doctor told us not to expect a full recovery but to hope for one. He also told us that if we didn't hope for a full recovery that we wouldn't do the things necessary to facilitate it. I believe this became our family motto. 

Olivia met some of her milestones during her first couple years. And she surprised us with the way she was progressing. It probably wasn't until the birth of our second daughter that we fully realized Olivia's deficits. All that we knew was that we wouldn't have a second chance to go back and try a different path for Olivia's recovery. So when it came to doctors and therapists we chose the "all hands on deck" approach. 

After nearly eight years we still stick to that master plan. Therapy sessions come in many forms. From scheduled sessions to constant correcting and teaching at home, we continue to push Olivia forward. Even Olivia's little sister helps her along the way with everything from helping her dress to correcting her speech. 

But all along this 8 year process Olivia has also turned the tables and taught me many things as well:

Olivia has taught me how special it is to hear your child say "daddy".
Olivia has taught me how special it is to hear your child say the alphabet.
Olivia has taught me how special it is to get shoes on the right feet.
Olivia has taught me how special it is to run to first base.
Olivia has taught me how special it is to ride a bike.
Olivia has taught me how special it is to go to a dance recital or a school program
Olivia has taught me how special it is to welcome family and friends at the door.
Olivia has taught me how special it is just to be able to sing Happy Birthday or today say "Happy Fathers Day"
And most of all...
Olivia has taught me the true meaning of unconditional love.

As a father I want the best for my kids. And like most fathers I want my kids to be perfect. But I have learned that "perfect" is a comparative word. Olivia is perfect in my eyes and she gets more perfect every day. My wish for her is that she continues to improve and amaze us with her infectious personality. My promise to her is that we will do everything necessary and never quit striving for a life without limits.

Love you Livi ❤️❤️❤️❤️❤️

Mother's Wing

If I could talk I surely would say,

Thank You for helping me along life's way.

If words came easy I would eagerly share

secret adventures and dreams, if I dare.

You would be able to hear giggles and laughs,

with good friends I would make in my grade school class.

I would sing and dance to my favorite songs,

if my legs would let me do no wrong.

I would jump rope and run, then play hide n' seek,

where no one could find me, from the bushes I'd peek.

If I could play games like ball and red rover,

maybe I'd get invited to parties and sleepovers. 

If I could wake up and get dressed on my own,

you'd laugh at my style, snap a pic on your phone

If I could just eat without making a mess,

you'd use all those napkins so much less.

If I could one day learn to read and to write

I would script you a poem to hang in plain sight

I might author a book telling my story,

imagination would flow...to God be the glory!

If I could just see like all of the others,

I would notice small details and relish the colors.

We could sightsee and travel, show me the world

My eyes would be open...great wonders behold.

Even through challenges it is plain to see,

I know how proud you are of me.

But until I am able to do all these things,

I'm blessed with the safety of my dear mother's wing.

                 


Happy Mother's Day to the mothers of 
            special-needs children 
                    everywhere.  




Our adventure continues...
The luckiest mom in the world

Pappy's Angel

PAPPY:

"God saw you getting tired 

and a cure was not to be.  

So he put his arms around you 

and whispered, "Come to me."  

A golden heart stopped beating hard

working hands at rest.  

God broke our hearts to prove to us,

He only takes the best." 

-Unknown

Harry "Pappy" Ault, my father-in-law, passed away after surrendering to a long battle with chronic illness.  He always referred to Olivia as,  "Pappy's angel".  He was so proud of her and all of her accomplishments.  There wasn't a time when he saw her or talked about her without a smile appearing on his face.   I take comfort in knowing that Harry is not gone from our lives and that we will carry him with us in our hearts.  And if I know Harry, he will have all the angels in heaven watching over our sweet Olivia in no time at all.   

We are never prepared for the inevitable.   I suppose it's because in those final days, the memories of our life together flood our mind.   We reminisce of days gone by and the laughs that we shared, all the while hoping that one day we will all meet again at heavens pearly gates.  During his last days in the hospital, we watched him practice his cast just like the days of summers past.  I suppose he was dreaming of the times he sat on his boat casting for hours.   I hope the practice has paid off and you are already reeling in big ones.   

Sometimes I'm not sure what Olivia perceives and how she interprets everything.   I do know that last night I watched her clasp her tiny hands together, bow her head, and I heard her say, "Dear God, I pray for Pappy.  I love God, I love Jesus, I love Pappy, Amen"   I'd say that's pretty awesome company to keep.  

I don't know how Olivia will handle the events of the next couple of days, but if I know her Pappy, he will be there beside her to guide her through.  Now I believe the tides have turned.  In my heart I know that Olivia is not only Pappy's Angel...but Pappy has now become Olivia's Angel.  

Until we meet again...
Love, your favorite Daughter-In-Law.

A special fairy tale

January gives us the chance to reflect upon the past year and make plans for the new year ahead.  I am thankful for the opportunities that have graciously been given to us. Through self-reflection in this blog, I have also been blessed to open up and share some thoughts and concerns.  I have enjoyed the cathartic nature behind sharing our experiences of CVI with others.  Better yet, sharing the journey of our daughter that just happens to have special needs and cortical visual impairment.

This adventure that we travel with our sweet Olivia takes us in so many directions.  In September, as most of you know, we traveled to Chicago to be included in the Changing the Face of Beauty campaign.  The "casting call" requested a written submission including 'what makes your daughter special?'.  If you know Olivia, you already know what makes her so special and a joy to be near.  If you don't know her, I hope by reading these posts you can feel how truly special she is.   I received confirmation that she was one of 17 girls with an assortment of abilities chosen to be showcased in this photo shoot.

**CASTING CALL! Mighty Acorn Foundation wants to spread the news that children of all abilities and backgrounds are beautiful! We are working together on a project that will "Change the Face of Beauty" and take place here in Palos Park, IL on Sept 15th and 16th 2014. This project will show the world that all children are beautiful no matter where they come from or what their ability is! We are looking for those 15 beautiful girls ages 3-9 years old to model gorgeous designs.**

The first day of shooting was an experience in itself.  We watched as photographers, designers, and volunteers were all busy completing their task of capturing beautiful children in a "Barn Fairy Party" themed shoot.

Kelle Hampton, author of 'Bloom' and 'Enjoying the small things' blogger, joined the event to help celebrate inclusion in advertising.  We met Mitzi and Brittany from Livie & Luca as well as other owners, designers and supporters of this great cause.

Taking in all the hustle-and-bustle it was amazing to witness how creative minds come together on such a project.  All of the preparation that goes on behind the scenes is never credited enough.  I met a couple moms and enjoyed briefly exchanging words of hope and excitement about this project we were traveling on together.

"What that means for my children is that the media-saturated world, by which they can’t help but be subconsciously influenced, broadens the definition of beautiful and perfect and acceptable so that they don’t judge themselves or anyone around them" - Kelle Hampton

"It’s not just about being seen. More important, it’s about changing the standard of beauty"                                                               - Kelle Hampton

The second day consisted of the children being photographed individually and with one other child by the photographer, Katie Driscoll (5 boys + 1 girl = 6 Photography by Katie Driscoll).  The barn was amazing and the set was designed by Modie Lavin.  You could literally feel Katie's passion for this project and her goal of having the media represent all the different kinds of beautiful children.  Her passion stems from her daughter Grace that has Down Syndrome.  I feel connected to Katie because like her, my special daughter is also my driving force for pushing the limits in all areas of her life.   Olivia inspires me to create a path of success for her future.

Olivia lit up in front of the camera, especially around the other 16 children.  She showed off her genuine side and flashed that perfect smile.  It was a delight to see her shine those two days in Chicago.  I am so proud of her.

This also gave us an opportunity to tour this great city as a family.  None of us had ever been to Chicago so we relished in the evening and toured attractions such as the "Bean" and the Magnificent Mile.  This big city, unlike our small farm town Ohio,  held the promise of wealth and success.  We even gave Chicago-style pizza a try, but it didn't compare to our hometown favorite, Giannamore's Pizza.

To our surprise, Olivia along with 3 other girls and photographer Katie Driscoll, graced the November 2014 cover of Chicago Parent Magazine.  The article spotlighted the movement and the efforts behind the push to change perceptions.

Driscoll states: “With them being the largest minority in the world, they’re the least represented.  ...Anything is possible if you work hard enough and creatively enough."
"We’ve gotta go to the next level and for me, our imagery, our media, is the biggest way. We see there what we believe is important and make conscious decisions about what we eat, wear and do from those images,” Driscoll says. “The more children with disabilities are included, the more our children are exposed.”

Link to full article: Chicago area mom changing the face of beauty

"Change" can occur very slowly at times and at other times it gains momentum and in the blink of an eye change happens.  This movement is currently gaining more steam and publicity.   In a future blog post, I will hightlight the next leg of this movement, #15in2015, #ImReady, #Changingthefaceofbeauty, #theEllenShow.  Using social media as the driving force to push this movement for 15 retailers in 2015 to get on board and commit to use children with disabilities in their advertising.  We are ready!

At the conclusion of the project, there was an online auction of all of the clothes, shoes, and accessories that were showcased from our photo shoot.  Proceeds from the auction went to support GiGi's Playhouse as well as help to build a kitchen for the Mighty Acorn Foundation's orphanage in Kenya.  I felt as though we were a part of something so much bigger.  Knowing that we were involved with something that had an impact to improve the lives of so many is a heartwarming experience.  I didn't want that to be the last of it.  I want the world to see Olivia.  I want everyone to realize that no matter what our individual abilities are, we can all strive for greatness.  Greatness in my book means that we use our talents to improve the lives of others.

Not long after the auction ended we received our look book in the mail featuring all the children including our sweet Olivia.  The companies who participated in this shoot will be provided these look books featuring inclusion in advertising to help spread the word to their consumers.

Then just today, this picture comes across my newsfeed.
"So remember back to this past September when ‪#‎changingthefaceofbeauty‬ partnered with Mighty Acorn Foundation and put on the most spectacular shoot in the history of shoots? Clink Link: Changing the face of beauty/Mighty Acorn Foundation  Well the items were auctioned and today Mighty Acorn awarded GiGi's Playhouse Tinley Park with a big ol giant check! WOW did that feel good to be a part of something that just keeps on giving! " --Katie Driscoll

It was truly a magical two days celebrating children and their uniqueness.

Thank you:
Livie & Luca

Mustard Pie Clothing
Matilda Jane Clothing
Birthday Express
KPea Original
Persnickety Clothing Company
Lemon Loves Lime
Jak & Peppar
North American Bear Co.
Oilily USA

"This project left 17 girls feeling strong, beautiful and important and 9 companies left questioning their future advertising campaigns.  That is pretty amazing." - Katie Driscoll

 Thank you to the 

Mighty Acorn Foundation 

and 

Changing the Face of Beauty 

for coming together to ignite dreams and empower the future of little girls.
Especially one sweet girl
that is very close to 
my heart. 

Link:  Project photos
Video: Changing the Face of Beauty Video

...our magical adventure continues
Olivia's mom

You will be OK!

"Kindness is the language which the deaf can hear and the blind can see."
--Mark Twain

A gentleman contacted Hills Elementary after he watched Olivia's story featured on the news. He wanted to donate towards the fundraising efforts. The kindness and generosity of others never ceases to amaze me. Along with the donation, he also sent this note.

 

"But you will be OK!" I already know that I will replay your quote in my head in the future. It will give me peace. Thank you Jeff!

Newspaper story on PCVI Society Fundraiser at Hills Elementary

Family brings attention to condition

November 8, 2014

Herald-Star

MINGO JUNCTION - When Olivia Ault was born, doctors grimly told her parents to take her home and "hope she smiles."

Olivia, the daughter of Anna and Tom Ault of East Springfield, suffered a brain injury that caused a stroke in utero and seizures after birth, leading to a diagnosis of cortical visual impairment. Now age 7, she appears to be a typical girl but still faces setbacks from her condition.

"Olivia had a stroke before she was born and it caused brain injury, developmental delays and visual impairment.  A lot of people do not know she's visually impaired until they get to know her," Anna said.

Her family is hoping to bring attention to children with her condition by supporting the start of a Pediatric Cortical Visual Impairment Society. Anna said the fundraiser began this past summer and plans are to contribute funds to the PCVIS and possibly present a check to the group during its annual convention in Omaha, Neb. She keeps in close contact with PCVIS President Richard Legge, who suggested the check presentation during the convention in June. The PCVIS is comprised of doctors and other medical professionals in the realm of cortical visual impairment, and Anna said surprisingly no such organization ever was in existence. With the formation of the new group, she hopes it will shed light on a condition that affects thousands of children.

"It is to help with research and support kids with CVI, among other things. They have to have $12,000 to start this organization and CVI doesn't have a society. Everyone on board has worked with kids in some way and CVI is the largest cause of visual impairment in children in western countries. It's a surprise that there's nothing out there like this," she said. "I thought, 'How could we help?' It's not only for Olivia, but it will help other kids with CVI as well."

Although Olivia lives in the Edison Local School District, she attends first grade at Hills Elementary School in Mingo Junction since it houses a visually impaired unit. School officials there have been assisting with her family's efforts and most recently collected $450 from a benefit dance and lemonade sale. Other Hills pupils donated $1 to attend, and organizers presented the family with a check at the conclusion.

Principal Cecilia Fritz said the school was happy to help Olivia and her family as they worked toward their goal.

"This is to help support Olivia. One year we voted for her to get a computer program and this is the first year for the dance," Fritz said "Last year, we held a dance for the United Way and it was a nice moneymaker. The kids dress up and it's like a social event for them."

Anna said teacher and family friend Melissa Brown contacted her with the idea.

"The whole community's response to Olivia and her needs is really amazing to me," Brown said, "This is what we want to do. We want to help out. It's amazing."

Total contributions so far have exceeded $1,300 and include profits from a GoFundMe webpage, a Thirty-One sales fundraiser and a lemonade and hot apple cider stand at the Unionport Apple Stirrin' Festival last month. Anna continued that online voting previously enabled Olivia and other kids like her to receive Lily LightAide device through Wonderbaby.org that utilizes LED lights, colors and movement for stimulation and learning. Wonderbaby.org is a project funded by Perkins School for the Blind in Watertown, Mass., the first school for the blind in the U.S. and where Helen Keller once was educated.

Because of her condition, Olivia also has issues with speech and cognition, making it difficult for her to communicate what she sees. She makes regular visits to doctors in West Penn Hospital in Pittsburgh and Children's Hospital in Cincinnati, plus she has therapy in North Lima. She can also count on her 5-year-old sister Amelia as a helper at home.

"She appears to be a happy, typical child and she continues to progress, but she is delayed. The stroke affected two-thirds of the right side of her brain," Anna explained. "The doctors told us to take her home and hope she smiles. What we have with Olivia is way past what we thought and our goal as parents is to push her way past where we think she can go."

Information can be found at the PCVI Society Fundraising link at GoFundMe.com and Olivia's CVI blog, "Hope She Smiles," at oliviacansmile.blogspot.com.

© Copyright 2014 Herald-Star. 

WTRF Channel 7 News report link:
WTRF 7 News report







...our adventure continues
Olivia's mom

ROAD TRIP!!!!

Our next adventure takes us to a suburb of Chicago, Palos Park, Illinois.    

Remembering back 7 years ago, I recall being asked many times during my first pregnancy; "Do you know what you are having, a boy or a girl?”  My response (as so many others have answered this question) was:  "It doesn’t matter as long as the baby is healthy."  As long as the baby is healthy... did not happen for my firstborn.  What we did receive was a devastating diagnosis and an unknown future.  

There are many questions that were swirling in my head during those days, almost like a tornado twister.  All I wanted to do was pick them from the air and find someone to give me answers, someone who could show me a glimpse of her future.  But no one could answer them, then or now.  I admit that some I am still afraid to ask out loud, ones I only ponder in the dark moments.  Maybe I really don’t want to know the answers.

One of these questions:   Will she ever be able to be independent and a productive member of society?  Will she be able to take care of herself financially when the day comes that her parents are no longer by her side?  

Following the birth of a child, parents are not usually preoccupied with what their child will be when they grow up.  But when a child that has a diagnosed problem, we are forced to think about their quality of life.  In fact, that's all we think about.  My question…What can she be?

"It is in our darkest moments that we must focus to see the light” - Aristotle Onassis

So I think...I brainstorm... I wonder -  What is the best way for my Olivia to build a nest egg to secure this future that has so many questions.  A financial future free of a burden that may end up falling on the shoulders of her younger sister. 

Olivia is beautiful, full of life and a soul exploding with happiness.  This is what we need to show the world.  Hmmm….Modeling?   Yes, let’s show the world that children of all abilities can be involved with advertising.  Let’s include all of God’s children. 

When I searched and came across a campaign already in existence, I knew that Olivia could be involved with this positive promotion of special-needs children.  Our current involvement is with Katie Driscoll’s campaign: Changing the Face of Beauty.  This is a creative movement of parents to integrate individuals with disabilities into mass media advertising.  It’s an inclusion of all kids with all abilities.

I then came across a post looking for 16 girls of all abilities and backgrounds, I applied.  This casting call was hosted by the Mighty Acorn Foundation.  Their mission is to restore hearts, ignite dreams, and empower the future of children across the world.  

I am honored that Olivia was chosen to participate in this movement.   This is what takes us on our road trip across three states.   Unlike the adventurous, free-spirit feeling of road trips back in my college days, our road-trips now usually consist of visits to doctors and specialists in the field of Cortical Visual Impairment.  This time, though, it is one filled with excitement and anticipation.  One that we are very proud to be associated with.  

Mighty Acorn Foundation and Changing the Face of Beauty are coming together to ignite dreams and empower futures of little girls by showing what is possible when children of all abilities and backgrounds are included in advertising imagery.  

Follow Olivia and other special children this week on 

     Changing the Face of Beauty: Facebook, Instagram & Twitter  and

     Mighty Acorn Foundation: Facebook

Our adventure continues in the Windy City,

Olivia's mom