Saturday, June 18, 2016

Super Dad

Dad - what the "S" on your chest really means

Dads are often the silent partners - the ones who stand in the shadows.  They're far from being the bad guys, though.  In fact, they are the protectors of the family - the good guys. When danger strikes, they have the superhuman speed of Superman to react faster than a speeding bullet to fight off whatever threat has obstructed their paths.

A special needs dad might find this role to be different than what was first expected or imagined.  Normally, from the time a child is born, a father dreams of tossing around a football with his son or taking him on a fishing trip to reel in a prize catch.  A dad has dreams of teaching his daughter to drive and the importance of staying away from those nasty boys.  For a father to a special needs child, though - and in our case a child with an additional visual impairment - those dreams are far from reality. 

This might not be the job they signed up for, but they are here, defending our paths to progress.  Did these fathers accept the challenge to fulfill the duties in this role?  I hope so, because if they didn't, they surely would miss out on one of the greatest of life's adventures. The job responsibilities are so simple, but there is more than meets the eye, and it requires superpowers.  What is a father's superpower, you ask?


A special needs dad must be:
1. Strong
  • "HERE I COME TO SAVE THE DAY" -Mighty Mouse
~They must be physically strong - strong enough to bear the weight of the child.  "Hold me daddy" when she is too big to carry.  The must be mentally strong so that they can bear the weight of challenges and disappointments.  They must have the strength to accept that small victories are enough.


2.  Sensitive
  • "YOU WOULDN'T LIKE ME WHEN I'M ANGRY" - The Incredible Hulk
~They must be sensitive to the needs of all family members.  They must be ready to offer a gentle touch when tears start to flow.  They need to have the ability to react appropriately to challenging situations whenever they arise.  The presence of a shoulder to cry on.  


3.  Solid
  • "I HAVE THE POWER" -He-Man
~Our fathers are those solid rocks that we depend on.  They are the men who build the firm foundation that are designed to carry the load.  These men have the power to know when to push and when to pamper.  They are the reason we are grounded.  


4.  Supportive
  • "WITH GREAT POWER COMES GREAT RESPONSIBILITY" -Spider Man
~Appointments, therapies, conferences, IEP meetings, research, technology - the list goes on.  The support from our fathers is immeasurable.  They pave the roads that lead us far and wide in search of answers and a better way.


5.  Special
  • "I'M THE BEST THERE IS AT WHAT I DO" -Wolverine
~They realize how special we are, but we also know just how special they are.  Daily, they perform super human feats of compassion and care.  It takes a devoted man to step up to the dedication that this role requires.  


Only the elite dads accept the challenge of proudly wearing the "S" on their chests.  The willingness and courage to be strong, sensitive, solid, supportive, and special.  For those that have done so, I applaud you!  Wear your "S" proudly.

Look my child!  Up in the sky!  It's a bird; it's a plane; it's...your daddy!  So, special needs dads, today I say the words you should hear every day: You are appreciated and you are loved.  You are our Superheros.

Happy Father's Day!  
We love you



Wednesday, September 30, 2015

BFF


   I want to wish Olivia's friend, Haley, a very happy 11th birthday today...

        


We were invited to Haley's 'Harry Potter themed' birthday party not long ago.  It was one of those parties that kids don't forget.  It was almost as if we entered Hogwarts School of Witchcraft and Wizardry as we stepped through the house.   It was a magical sight complete with themed treats and magic wands.  





Now, fast forward to a lunch date with my friend, Kim and her kids.  Her daughter, Haley, handed me a card.  Slightly confused on why she was handing me a card, I smiled and opened it up.

I read her written words, "For my birthday, I asked all my friends to bring a donation for PCVI Research.  We raised 500 dollars!"



Not many times in my life have I been surprised and speechless, but this was definitely one of these times.  What an awesome selfless act of kindness from a child!  Her mom explained to me that it was completely Haley's idea to request from her friends attending the party that in lieu of gifts, they bring a donation for the PCVIS.  It was something she wanted to do.  
Like the card says--

"A friend like you...makes my world a whole lot brighter"  The card goes both ways, Haley. You make Olivia's world brighter just by being you and by being her friend. 

Friendship is one of those areas that I worry that Olivia may never truly experience.  I worry because of her inability to communicate like typical kids do. You have made me realize that true friendship speaks with the heart.  Friends stand together despite barriers and burdens. 

The same way your mom has always stood by me side since 3rd grade...all those years ago.

'Best friends forever' - it can be done.  




Thank you to all of Haley's special friends that gave to a cause near and dear to my heart.  

...our adventure continues
Olivia's Muggle mom

Tuesday, June 30, 2015

What a surprise!

I was surprised, honored, and humbled to receive this special recognition at the CVI Conference.  Although my name is engraved on the plaque and award, it is all of YOU that have supported our fundraising efforts this past year.  You are the ones that are behind my 'Pediatric CVI Hall of Fame' induction.  I am so proud that Olivia's fundraising was recognized among the experts in the field of CVI.  Now, it thrills me to report that through your generous donations, the PCVI Society is now becoming a reality.  Tears of joy flowed as I accepted this award.


Remarks from Dr. Richard Legge:

"Special Recognition of Anna Ault as the first member of the PCVIS Hall of Fame"

"When conceiving of an appropriate “Thank you” to Anna Ault, it occurred to us that she has done something truly extraordinary.  A simple “Thank you” would not be enough.  Without ever being to a meeting, she dedicated herself heart and soul to making the PCVIS a reality.  We decided that as the history of our society unfolds, there will be those who make special contributions that deserve special recognition.  It was time to create the PCVIS Hall of Fame.  At last night’s Board meeting, Anna Ault was unanimously elected to be the first member of the PCVIS Hall of Fame.  Congratulations Anna!"



PCVIS Fundraising speech

On Saturday at the Pediatric CVI Society meeting I was asked to say a few words about our fundraising. 

These were my remarks:

‘We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving. I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place. 
From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn't think twice. Jump in, for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement. 
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place. 
Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.
Now, that we received the exciting news that this society has the funding to become a reality, we can capture the nonprofit status and start to think big.Capturing people that are passionate and committed to helping our society, and our children, will then help us to pick their pockets.” wink emoticon

Special Presentation of Fundraising Check

Special Presentation of Fund Raising Check by Anna Ault to the PCVIS Board:

"We, the Board of the PCVIS, do accept this tremendous contribution. In one dramatic stroke, the timeline for launching the society has been accelerated by at least a year. We know that represented by Anna’s check are many, many people who gave of their time and treasure to make the PCVIS a reality. On behalf of the children and parents who will benefit, the professionals who will learn, and the scientists who will move our knowledge forward, I give our deepest heartfelt thanks. Thank you." ---Dr. Legge 
Richard Legge MD: Neuro-opthamology; Pediatric Opthalomology; Assistant Professor, Ophthalmology UNMC College of Medicine; and President Pediatric CVI Society

Saturday, June 27, 2015

PCVI Society fundraising presentation

I was honored to present the fundraising check to the Pediatric CVI Society!  It was an awesome experience. I was asked to say a few words during the luncheon to the entire group of conference attendees. 
                                         Pictured beside me is the Pediatric CVI Society Board. 

Here are my remarks:
"First, I want to thank Dr. Legge for inviting me to say a few words today, but I also want to thank you ALL for committing to learn more about CVI and ultimately improving the future of those children diagnosed with CVI.
I write a blog chronicling our journey with our 7 years old daughter Olivia and her CVI diagnosis. I asked my husband to be a guest writer this past Father's Day. He said it best when he described our approach we have used with Olivia as a 'all hands on deck' approach. Meaning, involvement of all members of a team is needed and required, especially to do a lot of work in a short amount of time. 
And that's what brings us to Omaha and what motivated us to begin fundraising for the PCVI Society. You are all here, 'on deck'.
When we first started this journey with CVI I considered myself a novice, but now I consider myself almost a parental expert in the field. A field where it's hard to find someone who truly understands CVI. I live with it everyday. 
I believe those of you here, including the parents, come together with a common purpose. I believe in the mission and goals of the PCVI society. I believe a better future awaits. 
Last year as I was browsing the internet, I saw from the meeting minutes was the intent to form a society. But first they needed a startup amount of $12,000 before that could turn into a reality. I knew we had to help. Our initial goal was $500. The amount grew and we continued to surpass each new goal. Now, I encourage any of you to take on the challenge of fundraising. So, 'All hands on deck' of this ship we call CVI. 
It is with pleasure that we present our fundraising in honor of our sweet Olivia for $7,700 to the Pediatric Cortical Visual Impairment Society."

Our adventure continues...
Olivia's #1 fundraiser

Sunday, June 21, 2015

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 ❤️❤️❤️❤️❤️