Friday, February 14, 2014

Echo

There are certain times that words echo in our minds.  The words of the doctors saying “take her home and hope she smiles”  or the time another said, “with work, her vision can improve” or even the words of one particular therapist at Easter Seals.  Her words will echo in my head and in my heart forever.  I will explain this moment when time stood still.  

When I was pregnant with my second child, Olivia was only about 18 months old.  Remembering the nightmare of events that occurred with Olivia, we were very nervous about the pregnancy and delivery.  All went smoothly and on September 29th 2009 Amelia, Olivia’s sister, was born without complications.  After Amelia was born, I heard numerous times that “Amelia will be good for Olivia.”  I agreed that this child would be able to help Olivia during development or struggles that may arise in the future.  Maybe even helping her in ways that I didn’t realize at the time.  

But what I didn’t realize was that there was another perspective, another way to look at this scenario.  Bridgette, Olivia’s occupational therapist, would say something to me that literally stopped my world.  In conversation with Bridgette, I repeated what was said to me so many times…”She [Amelia] will be good for Olivia”.  And Bridgette looked at me without hesitation and said with passion, “and Olivia will be good for her”.  **Insert: frozen moment in time**  Wow!  I repeated that phase in my head…Olivia will be good for Amelia….Why have I never looked at it that way?  YES!  Olivia WILL be good for Amelia!!!  

Bridgette’s follow-up statements explained that her brother has Down Syndrome and he was partially responsible for shaping her into the person she is today.  In a way, he had even influenced the profession she decided to pursue.  She said that she didn’t know it at the time, but that every game they played as kids were actually a form of therapy for her brother.  She elaborated on her story and I began to understand.

This is so evident to me now.  Everyday we watch interactions between these two loving sisters.  We see Amelia being an untrained physical, occupational, speech, and vision therapist.  We witness caring and compassion that can not be taught.  I not only see the love they share for each other, but I feel it as well.  Now don’t get me wrong…they can fight, scream, yell, and cry just like other siblings, and that is okay too because that is normal, and we rejoice in anything that is ‘normal’.

And last week, when we were at Wheeling Hospital where Olivia had and EKG and ECHO.  Amelia (or Mimi as Olivia calls her) sat and held her hand when Olivia’s anxiety increased and she became upset about the technician attaching the monitor leads.  Amelia grabbed her hand and said, “It’s okay Olivia, it won’t hurt.”  And during the Echocardiogram when Olivia was finally calm enough to let them place the ultrasound transducer on her chest.  Amelia whispers in my ear…”Mommy, Olivia is doing so good, isn’t she?”  

I will never forget hearing that statement from Bridgette that day 4 years ago.  Those words had emotionally impacted me in such a way that I now appreciate what each of my girls bring to each other.  Every time I repeat this story to someone, I just can’t get through it without my eyes welling up with tears.  Those words truly echo within me.  

Pictured: Echocardiogram picture of our sweet Olivia’s heart.  


This story and names are used with permission:
“I can't even begin to tell you how honored I am to be a part of a memory as strong and positive as this one. You have really touched my heart and I cried tears of joy and celebration that my brother's life and legacy were able to shine through me and be passed on to such a wonderful family. Yes, please share this story. Maybe it will be an "aha" moment for another family.”  -Bridgette




Wednesday, February 5, 2014

Small town...big hearts


I wanted to take a minute (and a blog post) to reflect on our adventure with the Backpacking LightAide Program that was sponsored by Phillips, Wonder baby and Perkins.  Looking back on this I couldn’t have been more surprised by the entire experience.  

I originally entered Olivia because I thought that it would be wonderful to be a part of something from the beginning.  I felt the LightAide was a sort-of pioneering in technology for children with Cortical Visual Impairment.  My next thought was that this could give Olivia the opportunity to trial a new product to see if it was a good fit.  If it was…great, and if it wasn’t…then it’s better to know now than to invest in a piece of equipment that she might never use. 

Reading and researching about the LightAide, my intuition led me to think that this might just be what Olivia needed to motivate and engage her in her learning.  Could the LightAide be something that is more than just colorful lights?  Would this device encourage participation when the pre-programmed activities were utilized?  I had a good feeling about it.

Once we received word that Olivia was chosen, I was excited to not only introduce the LightAide to Olivia but also to her team.  I hope that my passion for finding the best way for Olivia to learn is transferred to the professionals that work with her daily.   What happened next was a complete surprise to us all.  Not only did we introduce Lily LightAide to Olivia and her team, but in reality we introduced it to the world.  

Literally, the news of the LightAide and the stories of the 6 children with Cortical Visual Impairment spread like wild-fire… 46 countries participated in the voting process!  I posted and shared our story and it was shared with others, hundreds of times over and to thousands of people.  More and more people grew to know Olivia and learn about her diagnosis.  

Through all of your efforts, the awareness for Cortical Visual Impairment grew.  Many people that have known me for years, stated that they never knew that I had to deal with all of these things.  I don’t look at it as “dealing” with Olivia and her disability; I look at it as having the opportunity to find new ways, break new ground, and push the limits to what the doctors once said that she might never be able to do.  

How people responded to our story is something I will never forget.  There are so many people, most I don’t know and will never know, that pushed for our sweet Olivia.  I will attempt to acknowledge some of these individuals below, but I hate that I can’t list everyone by name.  With 14 thousand votes, that would be impossible.  So for those of you that are reading this and voted for any of the children, I want to thank you from the bottom of my heart.

I was truly enLIGHTened and humbled by the support from our small town with very big hearts.


THANK YOU:
I would like to thank Bill Beattie, Superintendent Edison Local School District and Jamie Evans, teacher and coach at Edison High School.  It only took one email to let them know that Olivia was chosen for the Backpacking Program and Edison was on board with promoting her story.  Thank you #EdisonNation for using social media to make a positive difference in the life of my daughter…and others!  Not only did Edison vote, they didn’t stop there.  The students believed that ALL of the children deserved this new technology so they brought life to the idea of “Help Everyone SEE Our Spirit Week”, coordinated by Mr. Evans .  Through this student driven fundraising campaign, they raised a total of $ 3,209.47.  Donations poured in, not only from students, but individuals and businesses from the local community.  

In turn, every family will be able to receive a LightAide, all of the switches used to operate the LightAide, and the carrying case.  Another donation was made to purchase a LightAide and all the amenities to Easter Seals in Wheeling, WV for use with any child with Visual impairment.  And lastly, there was enough money left over to make a sizable donation to Abigail’s Angels.  Abigail, another Edison Local student, suffers from a genetic visual impairment called LCA.  She happens to be Olivia’s cousin.  Please visit her site: http://www.abigails-angels.com.  All funds raised are donated to the RDH12 fund for sight [a registered 501 (c) (3) charitable foundation founded by families of children with LCA caused by the RDH12 gene].

Not only did Olivia win a LightAide, but there was a very special person who contacted Olivia’s Aunt and wanted to donate a LightAide to Olivia.  Her request was that even though Olivia had won, she wanted her to have one that she would keep at school and didn’t have to transport back and forth.  By keeping it at school, it would also be beneficial for the other children in the Visually Impaired Program.  We want to thank Penny Mills for this extremely generous donation.  For someone that we have never met, your kind heart led you to want to reach out and make a difference and help our sweet girl.   You are very special!

The last person I would like to mention is one of America’s heroes.  Olivia received a very special gift from a thoughtful soldier.  Olivia received a necklace with a unique blue heart-shaped stone attached.  The note that came along with it said, “To: Olivia Ault, A gift to remind you to never stop smiling.  A small piece of Lapis to carry to your dreams.”  From: SGT James Goad  (Lapis: a deep blue semi-precious stone mined in northeast Afghanistan).  He mentioned that he hoped that Lily visits Miss Olivia again.  I am sure she will treasure this gift!

The good in people never ceases to amaze me.


Team Olivia:
Sister: Amelia (Mimi) Ault
Grandparents: Ge & Papa Lipinski, Grammy & Pappy Ault
Family:  Aunt Lori & Uncle Keith Kinney, Aunt Jodi & Uncle Jon Eick, Uncle Rich Ault
Cousins: Jon, David, Makara, Andrew & Abigail
Friends & Family: ALL of them!
Jefferson County Educational Service Center: Visually Impaired Program
Jeff Oblak:  JCESC Director of Special Education
Nikki Richardson: Teacher of the Visually Impaired
Miss Debbie Cosgrove and Miss Michelle Trikones:  Paraprofessionals VI unit
Edison Local School District Superintendent: Bill Beattie
Edison #TeamOlivia special supporter: Jamie Evans
Edison Local: teachers, staff, students, friends and community
Edison FFA
Indian Creek Local School District Superintendent: John Rocchi
Hills Elementary Principal: Mrs. Fritz
Hills Elementary School: teachers, staff, students, friends and community
Miss Mary: Occupational Therapist (Easter Seals)
Miss Kelly: Speech Therapist (Easter Seals)
Trinity Health System employees/co-workers and CEO Fred Brower
Wheeling-Nisshin Inc. employees/co-workers
Church families: Starkdale Presbyterian Church & Unionport Christian Church
All of our wonderful Facebook friends
All #TeamOlivia Tweeters:  esp. Hilary Kinney & Marshall County FRN & Wendy 
Social media force & networkers: Brett Youmans, Ryan Dunfee
Chris and Melissa Higbee: Support from the Higbillies 
Ault family Photos: Amanda Petrucci Photography

Other Donations from:
Matt and Dana Gallagher & family- Wallables letters
Everything Happy CMO Jon Repella- Happie Blankies
SGT James goad:  Lapis necklace
Penny Mills: LightAide donation, 3 switches and carrying case
Links below:
Amber Bobnar: Wonder baby & Perkins
Dr. Catherine Rose: Philips
Herald-Star & Wheeling Intelligencer:  Janice Kiaski
WTRF 7 news:  Sara Yingling
WTOV 9 news:  John Rudder & Celina Pompeani


Amber Bobnar & Wonder baby
Backpacking LightAide ProgramLink
Voting results page:  Link
Voting mapLink
LightAide Link


Philips, Perkins & Dr. Catherine Rose


Herald-Star/Wheeling Intelligencer & Janice R. Kiaski




WTRF-7 & Sara Yingling
* Help Change One Ohio Valley Child’s Life:  WTRF7 link #1

* Local Girl With Visual Impairment Wins National Contest:  WTRF7 link #2
* Local Girl Who Won National Contest Now Raising Money for Those Who Didn't Win:  WTRF7 link #3


WTOV-9 Jon Rudder & Celina Pompeani 
*Help make a child's wish come true - WTOV9 link #1


LightAides for everyone -  fundraising link



-- Blog: Hope she smiles

-- Twitter: Olivia's mom


Thank you again from Olivia’s mommy and daddy.  We are truly blessed by all of your support.  


…our adventure continues 

Monday, December 9, 2013

Voting begins

Day 1 of voting has begun.  Bring Lily LightAide back to Ohio and reunite her with her friend, Olivia.
Please vote daily.  Winner to be announced December 16th


Thank you all for taking the time to learn about CVI and vote for our sweet Olivia.

GO TEAM OLIVIA! 

Thursday, December 5, 2013

Lily departs Ohio

The time has come for Lily to return home.  We have enjoyed her stay with us.  Olivia and her team has worked very hard to utilize all of the LightAide's features to advance her education.  The visual stimulation that Lily provides encourages her to use her sense of vision.  Essentially, it makes the work more fun!  If I had to sum up what Lily has done for Olivia, it is: motivates & engages.  If we have a motivated and engaged child, the learning will follow.  The LightAide has literally brightened our days and increased our hope for the future.

Looking back on this experience we would like to thank those who chose Olivia to be a part of the Backpacking LightAide Program.  We are thrilled to be involved with anything that can be done to raise awareness, encourage participation, advance research, or educate others about Cortical Visual Impairment.  Understanding CVI can be challenging, but living with it is and adventure.   Again, we are grateful to the professionals and experts that dedicate their time and talents to our special children.  Anything that gives us hope for Olivia's future is priceless.

To reunite Lily & Olivia, there will be a special online vote starting December 9th-December 15th.  The website will be announced the morning of December 9th.  Each person will be allowed to vote once per day.  Bring Lily back to Ohio by Christmas!  Thanks in advance for your support.



...our adventure continues
Olivia's mom & dad


To learn more about the LightAide, please go to: http://www.perkins.org/store/lightaide

To learn more about the Backpaking LightAide Program and the 5 other families chosen for the program, go to: http://www.wonderbaby.org/articles/backpacking-lightaide-program


Monday, November 25, 2013

Lily travels with Olivia

Olivia and Lily have been very busy this past week.  They have been getting to know each other and Lily has been wonderful in sharing her vast knowledge with Olivia.  Lily has also been traveling around the Ohio Valley showing off all of her skills.  Here are some thoughts by those that have met and have been working with Lily LightAide.

Miss Mary, OT
"The various features of the LightAide allow me to work with Olivia on visual perceptual concepts in a more engaging and fun way for her.  We have worked with concepts such as big versus small, same versus different, patterning, and matching.  It is also a great tool to help with learning shapes and letters because Olivia can now visualize these better with the use of the LightAide.  She is able to then trace the letters with her finger and then form that shape/letter with manipulatives like paper, pencil, etc.  Her visual attention was better on the LightAide compared to other desktop activities.  I think using the LightAide helped her focus for longer periods of time."


Miss Debbie, Paraprofessional
"My name is Debbie.  I am the paraprofessional who works one on one with Olivia.  I met Olivia a few times last year at her old school.  I wanted to get to know her and of course let her become acquainted with me.  In August we started our first school year together.  Olivia has such a love for everything she does!  She just lights up everyone who works with or near her.  Olivia tries so hard with learning the alphabet, numbers, and shapes.  There are times when Olivia can’t recognize the items and can become frustrated.  We just practice and continue the next day.  When I first sat down with Olivia and worked with Lily, I was amazed.  I was amazed at how well she sat and was attentive to the lights and activities!  Most of the time, the activities in school can’t hold Olivia’s attention for very long.  She will then become upset and discouraged and we will need to move on.  We haven’t’ had this problem with Lily.  Her attention and the ability to do the activities encourage Olivia to do well and stick with it!  We have had wonderful days with Lily at our school!  We also have another little boy in our class with CVI who also had the chance to work with Lily.  He too loved the activities and did amazing!  I am so glad we were able to experience this learning aide and what a great tool it is for any house or classroom."


Miss Nikki, TVI
"My name is Nikki Richardson; I have been working with Olivia for three years.  Olivia has always been a joy to work with: She is pleasant and always tries to do her best.  Olivia wants to learn and wants to have the correct answer when asked a question about what she is being taught.  Although there have been some difficulties, Olivia has made tremendous progress in all developmental and academic areas.  The one problem that has remains consistent for Olivia is the inability to maintain visual and cognitive attention for long periods of time.  Olivia has not shown much intrinsic interest in any assistive device or developmental toy. This was true until she was able to interact with “Lily”. Olivia is engaged like never before when she is using “Lily”.  It is amazing to watch as she enters the room and immediately sits to begin working with Lily to learn her shapes, colors, letters and numbers.  She is so excited to show us what she can do!  This sense of accomplishment is causing Olivia to feel successful and helping her to gain confidence in the area of academic achievement. This will only facilitate her love for learning, and provide a format in which she can do so successfully."


Visually Impaired (VI) Program   
    Jefferson County Educational Service Center Visually Impaired support program provides designed instruction to students whose visual impairment adversely affects their educational performance.  Teaching activities, including orientation, mobility instruction, and Braille instruction, focus on the acquisition of specific competencies from the Expanded Core Curriculum.  Specialized materials, technical assistance, technology support, assessment, acquisition and training in the use of assistive devices for the visually impaired are provided.  These enhance the students’ opportunities for academic success in an inclusive educational program.

For more information on the LightAide Backpacking program, please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program

For more information on the LightAide, please visit: http://www.perkins.org/store/lightaide/




…our adventure continues
Olivia’s mom





Tuesday, November 19, 2013

Olivia and Lily LightAide - Day 1


Lily has arrived safely on Olivia's doorstep a few days ago.  Her journey to this small rural town holds high hopes.   

Surprise #1
Getting started only took a few short minutes.  It's simple, easy and ready to roll.   

Surprise #2
I admit that I greatly underestimated what the LightAide has to offer.  I had preconceived notions that Lily would show Olivia colors, shapes, numbers, and letters…but there is so much more than meets the eye (no pun intended).  I was aware that Lily uses light to engage the learner, but I was taken back by the vibrant hues of colors displayed by the LED lights.  I was also surprised by the preset activities that were developed to teach the content of English language arts, mathematics, visual efficiency, components of the expanded core curriculum, and even games.  It is preloaded with a total of 65 activities that range from easy to complex. 

Surprise #3
Olivia has never watched television. For a 6 year old, we know that is something unusual.  Typical television that is geared toward young children is much too complex for her.  She is unable to process these shows.  The LightAide captured her attention and encouraged her to participate.  I can't explain how huge this is for her.  She can now enjoy a type of technology built with her in mind.  I am so grateful to the developers of the LightAide that have the goal to advance our special children. 

Surprise #3...the big one
Olivia has never truly had a toy that she has been attracted to enough to remember to play with.  When she came home from school the other day, the first thing that she did was run to the LightAide that is set up on our dining room table.    Olivia remembered?  Cognitively, this modality had such an impact on her that she remembered.  Wow, I have no words.  I possibly just witnessed a miracle!

In summary, Lily is simply described as a motivator.  We all need motivation in areas of our lives, whether it is to advance at work or to lead a healthy lifestyle.   The LightAide is an educational tool designed with Olivia and other children with CVI in mind to engage her to learn and advance her to the next level.  The attached video is only 6 minutes, but was actually a span of more than an hour.  We where able to capture her reaction and witnessed her being completely engaged.  In the video I have highlighted clips from the areas she really enjoyed and excelled at.  Other areas, like numbers and letters, she struggled with on her first day.  I am hoping to show some improvement with utilizing Lily these next 2 weeks.  It’s also important to understand that these clips were from the very first time we used the LightAide.  Her animated reactions melted my heart.  What an amazing friendship her and Lily have already made.
 


Thank you Philips, Perkins Products and Wonder Baby for allowing Lily come to our house to play.  I'm sure her time with us will be well spent.

For more information on the LightAide Backpacking program, please visit: http://www.wonderbaby.org/articles/backpacking-lightaide-program

For more information on the LightAide, please visit: http://www.perkins.org/store/lightaide/


…our adventure continues
Olivia’s mom




Saturday, November 16, 2013

Livi meets Lily

Lily has arrived in Ohio!
We will have 2 weeks to experience all that the LightAide has to offer for our sweet Olivia.  I will be updating and uploading a video from our first day with Lily.  It is a video you don't want to miss!