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.

You tube: http://youtu.be/ftNHCtKu11c

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

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

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!

Team Olivia

Today, as we make the 4 1/2 hour trip to Cincinnati Children's Hospital, I reflect back upon all of the people we have encountered on this adventure.

The team of neonatologists in the NICU: Dr. Alan Lantzy, Dr. Giovanni Laneri, and Dr. Ruby Varughese; that delivered devastating news to us.  They do their job well, even when the diagnostics or outcomes are not favorable.

Mark, the NICU nurse, that tried to decipher this information for us and put things into perspective.  He saw my family at its most vulnerable.  He educated, comforted, and cared for us all, not just Olivia.  As a nurse myself, I will always remember his nursing skills and therapeutic communication as remarkable.

Bob, the lactation consultant that helped me provide nutrition to Olivia.  I felt this was the one thing that was in my control, one thing that I could do to help her, and he made sure I did not fail.

Christine Roman-Lantzy PhD, author of Cortical Visual Impairment: An Approach to Assessment and Intervention.  She gave us our first piece of positive news that Olivia had some vision and that it can improve with interventions.  This happened to be on my birthday, one week after Olivia was born.  What a great present she gave me that day.

Dr. Robert Cicco, the pediatrician that gave us hope and put us on a mission. He showed us the path to success with his words.  He encouraged us to set our goals high for Olivia and if we come up short and do not reach those goals, we have lost nothing.  In 2012 he was named Pediatrician of the Year by the American Academy of Pediatrics, Pennsylvania Chapter.  I know why he earned this title.  

The staff at West Penn Hospital, that scheduled follow-up appointments, home health, and early intervention.  I am thankful that we didn't have to think about these things.

Jennifer Orlando, the early intervention developmentalist that came into our home once a week for three years teaching us how to visually stimulate Olivia and open up her world.  She evaluated her needs and ability to reach her milestones.  Her suggestions were invaluable.  

The team at Easter Seals: physical, occupational, and speech therapists.  Too many people to name over 6 years (and I didn't want to accidentally forget anyone).  They have been a blessing, not only with their therapies, but for their continued focus and support.  

The Pediatric View Program.  I would be lost without their knowledge, commitment and research with CVI.

The staff (friends and former co-workers) at Weirton Medical Center labor and delivery, for caring for me during a difficult delivery.  The nursery nurses that assessed Olivia and found she was having seizure activity.  And my friends that had to deliver this news to me.  I'm sure this was very difficult for them.  

Dr. Lisa Noble, that gave the order to transfer Olivia to a tertiary care center that could diagnose and treat the cause of the seizure activity.  Dr Noble's nurse, Kristen, and the office staff that has followed us on this adventure and have provided care with compassion.  They always follow through with my any requests I have as a mommy in need.  

Dr. Joseph Sobek, that focused on exercises for the brain that would develop her vision.  These crossover exercises train the brain to work together (right and left sides) and make new pathways.

The teachers and staff at the School of Bright Promise where Olivia attended 3 years of preschool.  Miss Kitty and Merrie-Lynn are angels and were so very special to Olivia during her early school years.  This school is a hidden treasure in the Ohio Valley.  

Nikki, Olivia's TVI and Miss Debbie, her one-on-one paraprofessional, that are committed to Olivia's goals and learning outcomes in Kindergarden.  They are open to my suggestions and it is appreciated.  Bill Beattie, Edison local school district Superintendent, that has guided us through this process the past 3 years.  He is always putting our special kids and their assistive technology first and it doesn't go unappreciated. 

I want to thank Ruth Ann King for connecting me with Judith Millman from the Jewish Guild for the Blind.  She moderates a weekly teleconference call with parents with children with CVI from around the country.  The parents on the call have been so helpful sharing their stories, perspective, insights and successful interventions. 

Internet resources and blogs that show us we are not alone on this adventure.

In addition to the above mentioned, "Team Olivia" has also included: Help Me Grow-Early Intervention, Home Health, Pediatric Opthamologist, Pediatric Neurologist, and a Speech-Language Pathologist.  

Most importantly,  I want thank our family and friends that stood by our sides through this process.  It's a difficult road to travel alone.  They have been there through our darkest nights and our brightest days.  I am grateful for their love and continued support.

And last, but not least, I want to personally thank my wonderful husband for continuing to stand by my side and meeting new challenges head-on.  I could not ask for a better husband or father to my children.  God knew what he was doing when he picked Olivia's daddy.  As she so often says, you are perfect.

All of these people have had an impact on our lives and on Olivia's life.  I am grateful for the people I have met, the connections I have made and the people I have yet to discover on this adventure.  Godspeed to all of you!

...our adventure continues

Olivia's mom, team captain