Thursday, March 30, 2017

Eyes. Brain. What SEES?

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 never be like mine, yours, or our fathers! Visual deprivation is a constant in his life, sort of like the number pi, not having an end point, it will keep going forever, and there is absolutely no pattern.

Have you ever used the term “Pleasing to the eye”? Is it our eyes being satisfied, or really is it our brain being pleased? Eyes are tools to collect information, and Archer’s eyes take in a great deal of the world. Inside his brain, where the common eye cannot see is where the deprivation occurs.
Do your eyes ever play tricks on you? I’m here to tell you most of the time it is not your eyes, it’s the visual cortex of your brain crisscrossing paths of your experiences.

Image result for snow pile on fence
Let me bring this to light for you…While driving over a bridge I looked off to see some houses close to the river, bordered in white. In this quick glance my brain captured details and sent them through my catalog of experiences. The details of the scene were a conglomeration of white masses piled together. If you know me, you know white most definitely means snow! In this split second I mentioned to Brandon, “That’s funny I just thought I saw a big pile of snow in front of a house, my eyes are playing tricks on me or I need to get my eyes checked!” (Small detail this area had recently been flooded, and the prior week had warmed into the 70’s, no chance of snow still being on the ground!). Brandon replies, “You see snow on the mountains in front of us, and you love snow, so you wanted to see snow on the ground, not sandbags!” So, were my eyes telling me I’m deprived of snow? Or was it my brain piecing together components from my familiar experiences to build meaning to this unfamiliar scene?

The last 3 years I have been battling against that 80 percent. Trying to figure out a way to bring the 80 percent to him, catch the delay up, be all in, 100 percent. Shoveling through books, blogs, articles, digging from the east to west coast I found a very small planted network of CVI constituents. This garden of profound knowledge, settled me into the roots of visual deprivation and gave me the skills to see my child blossom!

At the beginning of February it was discussed how nice it would be for Archer to independently get into his red chair. As parents we quickly clarified, he must be able to look and find his chair, which furthermore means he must understand what the salient features of the chair. We broke down the language into describing the high back, and four legs. With confidence Archer has checked that off his list! Helping him learn to see, for him to see to learn, begins with him learning to learn. Amidst the deprivation there is cognition!

Saturday, February 25, 2017

HOPE. It's is in our GENES

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 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 voice to be heard. You here the voice. Will you listen? Will you share? It is the help of our allies I’m seeking today!

This year on Tuesday, February 28th 2017 a rare community will unite to create HOPE with the simple act of wearing jeans.  Join us to impact our world, raise awareness, show that you care, and have hope in genes! But the act is only relevant if you share your voice, speak up as to why you are wearing jeans for genes! To refresh yourself about Archer’s rare genes read here!

Archer does not have an overarching named diagnosis, 3 regions of rare genes have been identified, but impacts unknown, clearly in our case rareness was born. It is with hope our child learns to thrive. It is with hope our child is happy in his own skin. It is with hope that communities unite. Please wear jeans on Tuesday the 28th, and  SPEAK up for HOPE in our GENES!  

Friday, January 20, 2017

Whirls of Distinction

When one says “oh it is in my genes,” this is the generalization of gene inheritance. In high school biology class, you may have experimented with recessive and dominant genes, and learned combinations for certain features. If you are a female, like me, you may have even gone as far as planning what type of genes you were looking for in the man to be the father of your child/ren!

In Archer’s case, the long, curly eyelashes came from my dominant genes and thankfully he got his dad’s toes, however his genes had a few hiccups of their own, considered to be variants of unknown significance. Think back again to biology class, the parts of the organisms, maybe even the songs you made up to pass the tests, specifically the spiral like structures with “arms” housing the DNA, this is where Archer has a duplication and a couple of deletions. Three of his genes have “arms” either with extra material or lacking codes to complete the sequence. Long story short, the exact location of variance is so rare, it is believed the result of this was his many brain malformations, but the genetics world has yet to research in these distinct areas leaving us with no answers for as to how and why the variants are correlated. 

A geneticist, I consider to be the only one I will allowably let judge Archer’s book by the cover. My boy loves being stripped down to his diaper, better yet if on the crunchy paper of the examination table, wiggling with excitement from the feedback of the smooth, yet very noisy material! He checks for the edge of the table, learning it is beyond his reach to crawl off on to the floor. So to avoid the fight, we move to the cushioned bench, sitting and bouncing singing the new songs we are learning in music class, awaiting the doctor and genetic counselor.

“What can WE do for YOU” are the first words out of the geneticist’s mouth. Not once, in all the specialty doctor appointments, have I been asked this question. Let alone it be the first exchange after the customary handshake! This simple act of empowerment, uplifted my labors as a mother. 

As the appointment progressed the term being used frequently became “very distinct features.” So I asked her to explain these distinctions. And this is where the incredible capacity of genetics shows through. His whirls!! All along I thought it was my curly hair inheritance. Yet that wild and crazy hair indeed not curly but whirly! The physical body’s expression through his whirls, represents the neurological anomaly of: periventricular nodular heterotopias! Another feature the geneticist was able to detect by visual examination was the slight downward tilt from brow bone down to the bridge of his nose. I’m thinking, so you are telling me, two of my son’s most adorable features, besides that smile which really is from me, tell the story of what potentially is going on inside that brain of his. Remarkable science this is. 

Interestingly, the geneticist shared, when her journey in genetics started out (her age didn’t show at all, I’d say we are living in the same decade of life) around 15% of genetic variations were being explained, now it has increased to 20%, so there is hope in the future, but for right now Archer remains to be a one of a kind. I left the appointment inspired! My job continues to be the act of manifesting his future, empowering him to make history awakening outcomes!

Tuesday, November 8, 2016


The summer flew by, just as Archer has been soaring with development! Spending vast amounts of time on the road I often relate route maps and traffic to brain activity and the fluidity of Archer’s neurons. When approaching construction, a slow vehicle, turns, bumps, crossing animals, even pedestrians, really any sort of obstruction in my path, I’m reminded to allow this change in pace to occur. A reflection of how Archer often gets on a pathway ending in a round-about. His central nervous system needing the education to turn, to explore a new pathway. The work of AnatBanielMethod® Neuromovement ® teaches Archer where the turns are, how to slow down and approach with awareness, and ignites his abilities to imaginatively explore his world. Sounds like what childhood use to be, right?!?!

We were very sad for summer to end and daddy's return to teaching kindergarten. But as Brandon started his first week of school, Archer also got back in the saddle of learning with a trip to California. A change in pace fr0m the earlier trips. We met with Sylvia, our ABM® practitioner, for a Focused 4/12 ™, consisting of four focused days, and experiencing 12 optimizing learning lessons. Sylvia encompasses a passion to help children with challenges. She greeted us at her charming studio, full of energizing light, centrally located in the quaint little town of Sebastopol.

This trip fit our style of taking the back roads of life. Arriving in the morning for a lesson, passing the time between, walking around town, adoring the well taken care of homes. I would describe to Archer the various art features, colors of the blooms, patterns of vines, connecting the visual schemes to the smells and feelings grazing past his exposed skin. Rejuvenated with the sun shining down, Archer would take a snooze on my back. As our lungs filled with fresh air, our ribs expanding and compressing in unison. 

Over the week Sylvia was able to capitalize on Archer's development, focusing on the mapping of his feet and the continued activation of his pelvis and spine. Three short lessons a day provided time for Archer to manifest the learning. Working directly in this one-on-one relationship the entire week allowed for optimal growth, as Sylvia was able to amplify the outcomes by knowing exactly where they had left off. The important thing to take note about the ABM® approach is that the practitioner meets the child where they currently are, not forcing a position or movement, more over gently connecting the child to themselves. Here in this state, a learning switch is activated, the child moves with attention, directly connecting with their brain. By providing varying movement, new neuronal pathways are created, allowing the child to draw into the subtle differences of the change in pace.  
Please watch this short clip, Changing the Pace  featuring Archer's lessons with Sylvia.  

We returned in October for a Supervision group, where other practitioners got to experience working with Archer under the supportive expertise of Sylvia. This trip presented new experiences, new routes, and a new on looker, Grammy MO!! With her support I choose to change our pace of the long distance travels. Taking the risk of exiting the interstate. Taking turns leading us down two lane highways, on roads winding amongst countless vineyards, not knowing if service would exist. We navigated mainly from supplied road signs. We put trust into our intuition to get us there. What a change this provided us with! Grammy Mo got to experience ‘the magic’ of Neuromovement® and she is sold! Being there she got to be with her most treasured grandson, seeing him learning and growing in real time.

Grammy Mo was there by my side. A helping hand, to fed Archer, to bathe Archer, to clothe Archer, to read to him and put him to bed. Not only that but also, to be my companion, to be my supportive mother, to be my relief so I could take a breath in peace. This could be you…! Have you been thinking about a vacation? Fly to Reno, Archer and I will pick you up! Come keep Archer company, as I drive the lengthy Donner pass, dropping into wine country and arriving into a sun filled vacation, all while helping support us! I promise you this change in pace is worth every second. 

Tuesday, September 27, 2016

RED Rocketship to the MOON!!

Today I rose with my husband before the sun crested over the eastern peaks of the Ruby Mountains. A glowing ring settled on the horizon of those jagged peaks, bouncing off the bowls filled with snow, silhouetted by the darkness of the night, slowly giving way to the rising sun, this is the new view from our home. The very place our family will settle, a solid foundation, building a sanctuary of love, here our roots grow deep into the cooling earth of Autumn. As the sun rises, it lifts light into my soul, and shines beautiful message right onto our wall. Reflect today. Write. Share. Tis the season, and today I choose to take a spin on the story of Archer’s Journey, allowing my words to reflect a different person and different point of view.

MAA! MAAHH!! Archer, Archer, ARcher! I let my mom know I’m awake for the day, little does she know last night when I wanted to go to bed early, I knew. I knew it was my mom’s birthday tomorrow. I let her know I wanted to go to bed extra early, and I slept in until 6:45 this morning just so she could have a little peace to herself. She came in and said “Good Morning!” I’m already sitting up on my bed and get really excited, wiggling my arms and using my heels to lift and wiggle my legs, my head is also rotating around my neck. I’m creating my own movement to decipher my mom from all the other things in my messy room. (Mom’s still unpacking and I have a lot of stuff) I slowly let the wiggles wind down and make kisses for her with my lips. This I really like to do, mommy and daddy give me so, SO, SOO many kisses every day that I learned how to give them back! Daddy taught me air kisses are sometimes best to keep germs at bay! Mom sits on my bed, and waits. I want her to talk so I can identify her direction with my ears. But she wants me to use my visual skills to find her first. She is nice and helps me by wearing her red Nebraska sweatshirt. I like red and when it is used to highlight, it draws my vision to the target. Then I reach out and fell a face, but then my hand comes to a curly tendril. Now I am certain this person is my mom. I love her curls, especially when she wears them down and lets me feel with my fingers. I share with her my thoughts of the day, show her I know where my nose is, ears, mouth, stick my tongue out and touch it, oh then reach down to my right arm, and she got my toes for me! Then she moves my blanket off and tells me I have to get to the end of the bed, by myself, she isn’t reaching her arms towards me to help. Okay, this is why I got extra sleep, big boy day for mom. After searching the scene, by reaching around feeling with both my hands and feet. It’s clear and open for me to reach my arms forward, lift up my pelvis, and roll onto the top of my toes and over. Now I’m on my belly. I again have to reach my arms out, this time I’m already on my belly and I lift my pelvis, push my knees that are currently frogged out, try to pull them forward and inward, pull with my upper arms, and SUCCESS. I reached MAA! After she gets me fresh for the day, she moves off my bed and now it’s up to me to get on the ground if I want to play with my toys.  

 She is now standing in the doorway, I see her very well through my upper left visual field, and she still has that red sweatshirt on. As I’m leaving my gaze from her my eyes drop down still on my left side and I see the drawing of my red rocket that I got for my 1st birthday from my friend Dev’s mom, Karlee! The red sparkly stuff my mom put around the picture is what caught my eye. Then my grandma Mo gave me a red rocket lamp to put by my picture! These objects are salient features of my room. Remember today I’m being big, so here I go, roll, wiggle, push with my feet while I’m on my back, arching to look over my head. Then I decided to sit up, and do the forward thing onto my belly. This way I see more, but I see a lot sometimes and being on my back blocks out the clutter. Mom walked out of the room to get her coffee. I call her back in, MA, MA, Archer. When she arrives in the doorway, I’m sitting right in front of my red rocket picture. I touch my chest with both hands in quite a stern communicative way.
She knows I’m excited. I look at my red rocket picture and I reach out. Oh, got it my fingers touched, then I glide them over to the red sparkly stuff. I have to look away to capture this picture in my brain. Then I get really excited and look back again, and I just have to giggle because I’m SO BIG and SEE. I’m so proud of myself. Seeing is believing!  She tells me how it is long and has a point at the top. There are legs like fan blades at the bottom. These shoot flames out and lift the rocket off into the sky!! My mom takes me to music class and I get to see my friends. I just started my 3rd semester of music class and you wouldn’t believe it. One of the songs in the collection is about a rocketship that shoots to the moon. Red rockets are just the coolest. I also have a pretty cool mom that works hard to help me explore my world. She is constantly educating herself on how to be a better teacher for me. Having a visual impairment creates my view on the world to look a little different, it is in the eye of the beholder, and in my moms as she brings my the world to me with easy simple adaptations! 

Do you want to know a little more about what my mom did over the last year? It’s gonna have to be in a nutshell because we did a lot of traveling you already know about that by reading about my trips to California. Actually I’m just going to tell you about a class she took, Nevada Partners in Policymaking. She started way back in February. She was gone 4 complete weekends, but these were fun because I got complete daddy time! There was one day in June that she didn’t make it because we the ABC Sparks’ were in great need of some family time, and guess what this is the day we found the house we bought in August! Any who, at that class she was learning how to be a policymaker. Do you know my mom might just create a movement, of course about me! She learned at her class all about how to use People First language (look it up, I’d appreciate it), about the American’s with Disability Act (ADA), the Individuals with Disabilities Education Act (IDEA), how to write Individual Education Plans (IEPs), how to write bills and contact the local, state, and federal governments, how to create routines and schedules for me, how to be the best advocate possible ALL for me. She graduated from this class and is eager to take action on my educational future. Here is the speech she gave at the ceremony.

“Hello! My name is, Cheyanne Sparks. 
The reason we are all here today is to share about the positive impacts Partners in Policymaking has made for each and every one of us, and for our families, and on our communities. This is a class that created lasting connections. A class where you gain eye-opening respect for every unique individual and each situation. A class that is sure to uplift one’s confidence. And most objectively, a class to ensure ALL are included! Today I’m delighted with this opportunity to briefly share the soulful message of my family ABC Sparks and the impact of learning.

Thank you all for being here today in support of your loved ones.
My husband, Brandon, and I met just over 10 years ago, cliff jumping! Although from that moment on our souls were united. We threw tradition out the window. Not rushing to tie the knot, until 6 years later. In that time we found happiness in adventure, this time allowed for us to learn and create space for one another, in order to grow together as a family
In 2013, we got the news, the process of nurturing our first child had started. Since then, yes expectations have changed, yes our will has been tested, but we have a VISION for our son to be included in all our adventures in this story we call life.

Our blessing, Archer Jay, has a very rare genetic code, the first every reported in the world. There isn’t mounds of research to compare with. And this my friends is the true essence of the blessing, there is no glass ceiling to hold him back. He isn’t following the traditional scales of development, resulting in the label of being delayed, and having multiple disabilities.
Archer turned 2 in January. Still living life in a horizontal plane, we changed our vision for our son, and removed all adaptive equipment from his life that was inhibiting him from moving forward. It is when we stepped out from the turbulence of those helicopter wings that he began to thrive and gain understanding of the world around him each day, progressing towards his future.

Without Archer I would never have been positioned to be enrolled in and now graduating from the Partners in Policymaking class of 2016! The timing of this class was impeccable, as the IEP process begins soon. I plan on utilizing these new skills on the adventure of formally educating our son, and beyond. Partners has informed me of our rights, provided a platform of respect and acceptance, and motivated me to keep spreading our soulful message. Not only did I walk away encouraged after each session, but inspired by the connections made with numerous valuable resources. Partners empowers you to make your voice be heard.

As a family, we the ABC Sparks’ value the experience of learning, and will expand on the education Partners has provided.

As a family, we are inspired by the evolution of growth, and believe that potential is always present.

As a family, we live with our doors OPEN to possibilities.

As a family, we are working on navigating our own journey with freedom of choice and inclusion for all!”


Eyes. Brain. What SEES?

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...