Sparking the light in Archer life! 4/1/2015

-
Day one on my journey of sharing Archer's story. Here we go, so much to share, as if I need just yet another daily task, but today I share the light that Archer needs in his life. His eyes work perfectly fine, it is his brain that is not "seeing." This impairment is called CVI - Cortical Visual Impairment. That means his impairment involves his brain - not the structure of the eye. CVI is not about acuity, it is about recognition - about recognizing or making sense of what he sees. This is why we need to literally provide light in his life. Lights activate the brain's visual cortex. For the brain to have the best opportunity to see, another factor to consider is the complexity of array. For example, cluttered backgrounds, create a hard concept for him to visually via the brain interpret. He has a hard time identifying finer detail and boundaries of objects when not spaced apart and presented on a plain contrasting background. Think about it, if you were unable to see finer details would you find a red checker that was placed on the red square of the board? Motion helps Archer see, he likes to move, bounce, stroll, ride in his scooter, and be pushed around in his stander. If he isn't moving and something else is,  this benefits his visual recognition, even more if it is metallic and moves and presented in his stronger visual quadrants! Archer has a few a pinwheels around the house to help identify where he is, such a great marker for him to find and focus on. It helps to give him time to find and focus, especially if marked with a favorite color (red/green) when we have latency he does find objects! We use to call it 'peaks' when we would get a focus for a milla second from him. Now those peaks are turning into longer pauses and he is focusing on objects and recognize our face! Lately he is recognizes more environments or transitions in the day, as we get better at adapting his environments the more opportunities he has to develop and use his vision. He gets so excited when he comprehends and makes the visual connection. The research out there reports that CVI is a 4.7 year learning curve, and this is when the individual has isolated CVI, our little bug has multiple brain malformations. The good thing about CVI is that for one it is not a blindness, it is a visual impairment, the brain is an amazing organ that can find new pathways. It is our journey as parents to learn, grow, and develop alongside of Archer. 
Picture 

Popular posts from this blog

"Rare"

-
Image
February 28th, 2023 is Rare Disease Day. Chances are it's rare that you know the date or significance of this day. Why, because it's rare that you or your loved ones are affected by a rare disease. A small percentage of us out here in the world know about the rare day. However the rare population that DO know about the day are fully aware. They may not all order their steaks rare, but they do have a rarity among them! While it's RARE that I share today, given I haven't in nearly 5 years. Even more rare is the day I choose to bring my voice back happens to be National Rare Disease Day, coincidence I think not!   Where in the world has Archer journeyed too? Well I should say, he has became quite a jay bird, rightfully so as any nine year old does and will, a strong will at that. He is finding out what a personality one can have! Jay birds are bold and known for their raucous manner. Archer has learned his voice gets him what he wants, any sounds, louder the better. More o
Read more

Visually Impaired children NEED access to Literacy.

-
Image
As many of you know the little prince has Cortical Visual Impairment (CVI). We consider this to be his greatest challenge in life.  Thankfully we when we set out on our journey, we found organizations making statements about the necessity of CVI. American Printing House for the Blind (APH) upholds the following statement, produced in 2008 on CVI. "Children who have Cortical Visual Impairment (CVI) require educational supports that are equal to those who are considered to be blind or visually impaired." When assessing how to propel him forward in life we quickly understood it comes down to LITERACY. He is happy to simply move around his world by feeling, smelling, and listening, BUT THEN the frustrations set in. He has vision, and he needs assistance to guide him into accessing his visual world. This BEGINS with building his literacy skills. We use approaches researched and developed by Dr. Christine Roman-Lantzy. We have changed the way we interact and have learned
Read more

HOPE. It's is in our GENES

-
Image
As year 3 of parenthood rolls right on by, my voice begins to elevate further into the world. One single voice , enrolled, to decipher her son’s expressions. Translating the communication of his experiences with writings, my own skewed scope.   Why share? Why give Voice? To spread the vision of rare disease. Rare individuals DO positively impact our world.   We were welcomed to parenthood with a RARE experience, but not as rare as some families’ lives. The families we now relate with, some never even having met in person, but we share these rare experiences, that are even rarer from each and every rare child. According to globalgenes.org 350 million people worldwide suffer from rare diseases. Approximately 50% of the people affected by rare diseases are children. Imagine this… if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. But, WHY do we not hear about these rare diseases? It is hard for one single v
Read more