Archer's Journey

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

I have been branching out in my advocacy efforts and what I have learned is MOMS, yes MOMS, we are the ones whom wake up with premature wrinkles because we unfortunately not only live it, but we dream about IEP's. And this is why I wake with spry grey hairs.  I took some time to share our story, focusing on the impact of the diagnosis of Cortical Visual Impairment. Check it out if you haven't already! https://cvimomifesto.com/2018/01/22/moms-on-monday-11-cheyanne-from-nv/

We have a 4 year old boy! He loves to be happy, don’t we all right? Archer’s vocabulary has begun to expand exponentially. He chooses to express words with great intonation. Awesome, cool, and Wow are a few of his favorite words, along with soccer ball, and "play rocks". His new favorite actions are to stand at the door and with slight demand say, “open door handle!” I knew, all in time we’d be blessed with his spoken language. A few words where there, but lingered for months. What did it? Being around his peers speaking at preschool. This provided him the experience needed to synthesize his own spoken language. Hello, language neurons, thank you for sparking and connecting.    Ha-PPY, is a feeling Archer understands, and will be quick to express if the situation presents itself. As a parent of a child with challenges, introductions can be tough and stir-up several emotions. I choose to explain how he loves music, being outdoors, and getting dirty. He can count

Yesterday afternoon as I drove home from dropping Arch off at preschool a feeling of solitude wrapped me in joy. As the sun shined through my window, the silent air filled with solemn breath. I was alone! I slowly shifted down into second gear to make the final turn towards home and I smiled to myself, of the blissful moment that has been waiting its turn so patiently. Walking in the door I see the daily calendar. I'm a day late, so I pill off the paper to reveal the days message. It reads " Do you have the patience to wait until your mud settles and the water is clear? " Here I am folks, Hello, I've missed my words, but with good reason they went silent. It was the return of seizures that took my breath away. I thought we won that battle back in year one. This was hopeful thinking. Although I wash the medicine syringes twice daily, it seemed the days would come to an end. Instead the seizures returned, not with a vengeance like some children, with just enough of

Life is instinctive and we have been wired to react; move quickly, do not delay. Well, delay, was introduced to my life a little over 3 years ago, and with that a world full of deprivation. Deprivation showed its face when my breast-fed child struggled to melt his gaze into me when intimately being nourished. The damaging lack of material benefits considered to be basic necessities in a society, deprived. The face, a considerably complex image to interpret for a child with cortical visual impairment. Inside these little dears’ skull, structures are lacking or have been damaged depriving the visual processing center and visual pathways of the brain. My son is unable to experience a sense of relief by visually capturing my face. When he needs a “security” check-in, the simple reassurance of finding my face is inaccessible to him. It is estimated 80 percent of what children learn comes to them through their vision. Archer does not learn by watching others. His world will neve

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