Chasing bubbles with Alyssa

By the time Alyssa was one, the world of MRIs, doctor and therapy appointments was a familiar one to us. Even as a newborn, Alyssa’s eyes seemed to move involuntarily, so we pushed for an eye specialist to see her. We were stunned to learn then that the specialist believed despite some perception of light that Alyssa was functionally blind and never expected to see. Those eye movements were called “nystagmus” which made any focusing impossible. When following up with a neurologist at seven months, we learned something different. She had Cortical Visual Impairment (CVI), not blindness. Though not blind, her brain doesn’t process what she sees well and needed therapy to make the most of what she could perceive. Between learning about CVI, her brain malformations and their suspected effect on development, we had a steep learning curve.

We got her into therapy quickly and started to see some early responses. Still, she didn’t respond quite as expected, and some of what the therapists saw they wrote off to her vision. When she was about a year old, a geneticist noticed that she wasn’t responding typically to sounds and recommending having her hearing checked. Hearing? I was pretty thrown off guard with this revelation. Did she have a newborn hearing screening? No one ever mentioned her hearing before. I had seen her responding to sounds like doors closing and the microwave in another room. We didn’t realize until later that she should have alerted to us when talking to her or to each other. We knew she was behind developmentally, but everyone thought it was vision or developmental delay, and no one gave her quality of hearing much thought.

Like most parents, I knew very little about hearing loss. Her first test, while awake but quiet, was the Otoacoustic Emissions (OAE). The results indicated a moderate hearing loss, but the audiologist said this might be caused by fluid in her ears. She was sedated, tubes were placed, and an Auditory Brainstem Response (ABR) test administered while she was still asleep. Tubes did help; her hearing changed to a mild to moderate range. While Alyssa was in recovery, the audiologist explained what the tests showed and let us know that she would in fact need hearing aids.
By then, we were getting used to learning new diagnoses. After blindness and risks of cognitive delay, hearing didn’t seem to be that big of a hurdle. We threw ourselves into getting her fitted for her hearing aids and into therapy. It was beyond helpful to have the hearing coordinator, a non-doctor experienced in talking to new parents about their baby’s hearing loss, explain the next steps and help us pull a plan together with her huge, highlighted notebook illuminating the process and choices ahead.

In just those first blurry thirteen months, we had a lot of information to take in and no time in which to adjust to it. We learned that a child with mild hearing loss may have difficulty hearing soft speech or conversational speech in background noise, and that moderate loss would cause difficulty hearing normal conversational speech. Alyssa’s mild to moderate loss caused her to hear some sounds but not respond or discern others. If a child cannot hear all the speech sounds well, she will learn to talk the same way sounds are heard, and also have difficulty understanding spoken language. The hearing coordinator explained to us that Alyssa may not hear the sounds “p, sh and c,” for example, but hear a phrase like “piece of cake” as “iece of ake.” Without the use of hearing aids, she would be working so hard to make sense of what she heard. She might find classrooms and conversation confusing and stressful – learning would be more work than fun. She might disconnect from a world that didn’t make much sense.

Alyssa started therapy at home with a Magnolia Speech School therapist shortly after getting hearing aids, an early intervention program for babies birth to three that is free of charge. She also attends a special needs preschool (which has a total communication approach) at T.K. Martin Center for Technology and Disability on the Mississippi State University campus, and has PT, OT, feeding therapy and speech through Kid Therapy Spot. We are glad to know that she can stay at T. K. Martin until she is five. She is now 27 months old has made great progress over the past year.

We have learned many games to do at home to help improve her listening and communication skills. If she appears to hear or respond to a sound, we praise her and say, “Yay, you heard that!” We made an activity box with her favorite toys (animals, vehicles and people at this point) to help her see that specific sounds are associated with each one. We practice the six Ling Sounds with her too, knowing that if she respond to them and eventually learns to repeat them, we know aids are working across all frequencies.) Daily routines like meals, bathing, getting dressed and playing are also ideal opportunities to practice listening skills. We explain everything to her. Singing is another great way to engage her. Her favorites are popping bubbles, singing songs, story time and peek-a-boo. We rewarded any imitation of sound that she gave even if it wasn’t quite right. If she showed any interest in communicating, we’d jump on it to keep it going, even if we were in the middle of an important meeting.

We see such changes in her. From the moment Alyssa started wearing hearing aids, she began reacting to sounds she had never heard before. Now she looks for the person talking and explores the world around her much more. She said her second word ever within a few weeks of wearing them: “Bubba” for her older brother. (We highly recommend big brothers like Triston!) She started wearing glasses shortly after starting hearing aids to help with near-sightedness. Both glasses and hearing aids have opened up her world. Before, she seemed more closed off and to herself; disconnected. We are enjoying getting to know a more mobile, talkative, curious Alyssa as her world opens up.

Alyssa’s journey is just beginning. We know she will face down challenges, but we believe in her and have faith in her future. We had to embrace patience with her and ourselves. Some things we learned quickly, but learning how to best parent Alyssa comes more through educated trial and error. (We learned from experience that Ear Gear clips were a necessity to keep aids safe, for one thing!) There is nothing simple or easy about adjusting to the news that your baby has a hearing loss, visual impairment or any other medical condition. Some days we definitely feel in over our heads, but our new way of life feels more familiar the more bubbles we chase with her.

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Sharing the LightAide

Aly has really enjoyed using the LightAide these past several days. We have used it a lot at home and I took it to her school last week. Aly attends T.K. Martin’s Project IMPACT preschool program for children with disabilities in Starkville, Mississippi. Her teacher, Christan Toney, had many great things to say about the LightAide.

Mrs. Toney said, “We really enjoyed all the different features the LightAide offered, including the movement and different patterns of lights. The different visual displays really seemed to hold Aly’s attention and that of her classmate. I was impressed with how easy it was to go to the different screens. Using the LightAide was also another way for me to work on switch access with Aly. We have used a switch before to operate classroom toys, but she really seemed to grasp the concept that she was making the light pattern change. Her accessing the switch appeared to be very intentional. It made for a wonderful classroom activity that helped with cognition, motor, langue and visual skills.”

I had the chance to show off the LightAide this past weekend after my son’s birthday party. Several of our family members came back to our house and were eager to see Aly in action. They had seen the article in the paper and my posts on Facebook about Aly trying out the new product. I showed them how easy it is to use the LightAide and go through the different activities and the different features in the settings. I showed them the visual activities that work on tracking left to right and top to bottom.

I explained how the lights are used to engage Aly and teach her everything from focusing and tracking to reading and math. I also showed them how much Aly loved using the switch to change the color and move the ball. The more she uses the LightAide the more her hand movement with the switch becomes intentional. She gets really excited when the colors change or she makes the image move. I love seeing her understand cause and effect right before my eyes.

I showed them the different activities that have moving elements such as “watch the wave, “watch the bubbles grow and pop,” and “track the snake.” Aly really gets into these activities. Her abilities to track have improved so much and I know the activities that are designed to teach children how to read from left to right will really benefit her.

The possibilities of the LightAide are endless. There are so many great activities with options such as changing the color, changing the speed of movement and changing the order of colors. The LightAide is very versatile and can be used by children of all ages and learning levels. The best thing about the LightAide for me is that it grows with the child. Although Aly may not be ready for the more advanced activities such as learning letters and numbers, she still greatly benefits from the fundamental skills the early activities offer. These activities instill important learning skills and prepares children for learning the alphabet and numbers. The activities continue into learning how to form words and consonant sounds and math skills such as learning numbers and counting. Children also learn shapes and how to compare shapes of different sizes, lines of different lengths and columns of different heights.

As the Backpacking LightAide Program comes to an end I can’t help but think how many children will benefit from this product. Children like Aly who have CVI (Cortical Visual Impairment) and those who are low vision rely on light and movement more than we know. I can see it in my daughter’s face how important lights will be in her learning because nothing else stimulates her and holds her attention as much as light. It is my hope that Aly will have a LightAide of her own very soon and that she will have access to one at school and in therapy.

To learn more about the LightAide visit http://www.perkins.org/store/lightaide/. To read about the other families’ experience with Lily LightAide visit http://www.wonderbaby.org/articles/backpacking-lightaide-program. After the six families have spent their two weeks with the LightAide voting will take place on the http://www.wonderbaby.org site to have one family selected to receive the LightAide as a gift. I will post on how to vote at the end of the program.

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Exceptional Learners Conference provides information on CVI

I recently attended the day-long Exceptional Learners and Exceptional Instruction series presented by the Children’s Center for Communication and Development at The University of Southern Mississippi entitled “The 5 senses of Learning.” The conference was held on October 4 in Hattiesburg. The series was broken into four presentations: Understanding Cortical Visual Impairment (CVI), Hearing Loss and Dual Sensory Impairment, Positioning for Participation and Feeding Challenges in the Special Needs Population.

I was very interested in attending this conference because each of the presentations applied to my daughter Aly. She has CVI, hearing impairment, developmental delays and feeding difficulties. I have wanted to attend a conference on CVI since Aly was diagnosed, but unfortunately there are very few in our area. Janet Salek, who presented on CVI, has trained with the leading specialist in the area of CVI, Dr. Christine Roman-Lantzy. Janet studied under Dr. Roman-Lantzy several years ago, but most recently spent a week with her during the summer at a training and learned a lot of new information and intervention strategies that she was eager to share.

The topics discussed during the CVI portion of the day included: definition of CVI, causes of CVI, varying degrees of CVI, expectancy for increased use of vision, 10 characteristics of CVI, assessment results guide appropriate visual accommodations and interventions. The presentation was based on Dr. Roman-Lantzy’s approach to CVI, according to Janet. The information provided came from Dr. Roman-Lantzy’s book, “Cortical Visual Impairment: An Approach to Assessment and Intervention” as well as trainings and presentations she has done. Janet began the presentation by stating that CVI is the leading cause of visual impairment in young children in first world countries where advanced medical interventions are available to infants and children. In children with CVI, some degree of vision is almost always present and there is an expected prognosis of continued improvement in visual recovery, Janet said.

Janet’s definition of CVI stated that CVI is a neurological disorder, which results in unique visual responses to people, educational materials and to the environment. When students with these visual/behaviorl characteristics are shown to have a loss of acuity or judged by their performance to be visually impaired, they are considered to have CVI. According to Janet, the eyes may have the capacity to see but the brain has difficulty interpreting visual information due to an insult to the brain. The visual impairment lies within the visual pathways of the brain rather than the structures of the eye or optic nerve. In most cases, the eyes are structurally normal, she said.

Janet continued by saying CVI can be present with any ocualr condition, most commonly: Retinopathy of Prematurity (ROP), Colobomas, Optic Nerve anomalies, Optic Nerve Atrophy, Optic Nerve Hypoplasia, Strabismus and Nystagmus. CVI is caused by a variety of insults to the brain including: Asphyxia (lack of oxygen before or after birth), Periventricular Leukomalacia (PVL) – affects the white matter in the periventricular (area around the ventricles), and Intraventricular Hemorrhage (IVH) – bleeding into the ventricles of the brain. CVI is possible with Grade IV bleeds from IVH, she added.

Congenital causes of CVI include Hydrocephaly and stroke in utero. Infections can also cause CVI such as Cytomegalovirus, Toxoplasmosis, TORCH and meningitis. CVI can also be acquired after birth through birth trauma, brain tumor, traumatic brain injury (TBI) including accidents and shaken baby, near drowning and near-SIDS. Other causes of CVI are structual abnormalities of the brain including: Spina Bifida, Microcephaly, Lissencephaly, Schizencephaly, Polymicrogyria and agenesis of the Corpus Collosum. Additional causes of insult to the brain are Dany Walker Syndrome, Mitochondrial disorders and Metabolic disorders such as Hypoglycemia and Kernicterus Bilirubin, Janet said.

According to Janet, certain unique visual behaviors that accompany children with CVI were first identified by Dr. James Jan and his colleagues in 1987. Dr. Roman-Lantzy has identified additional visual and behavioral characteristics compiling a group of ten basic characteristics. Dr. Roman-Lantzy’s book was published in 2007. The visual and behavioral characteristics of CVI include: attraction to light, color preference (often but not always red or yellow), preference of peripheral vision – child may be more visually responsive in one visual field, and visual latency – slowness to respond to a visual target.

Janet stated that children with CVI may more easily notice objects that are moving. She said this is why mylar is widely used because it gives the illusion of movement and reflects light. She said that some children with CVI may stare at a moving ceiling fan or out the window of a moving car. Children may also have an abnormal blink response. She said the blink response may be absent or delayed to touch (touching the bridge of the nose) and to threat (an open hand brought to within two inches of the eyes). This was the first time I had heard or read about abnormal blink response as a characteristic of CVI and it struck a cord with me because this could explain why Aly appeared to be totally blind in the first few months of her life. She would not blink when objects were put in her face or when a light was shined in her eyes. I thought this was very strange and the opthomologist mistook this as her having no light perception, which was inaccurate. At that time her brain was not able to process at all what her eyes were seeing. Her nystagmus was severe at that time because she could not process the complexity of the visual world. This all made sense to me over time through learingin about the characteristics of CVI.

Visual/motor characteristics of CVI inlcude: a child may not look and reach for an object simultaneously, a child may look at an object, look away and then pick up the object, a child may have difficulty accurately reaching for an object. Janet said this may be due to a complex visual environment. It may be difficult for children with CVI to see at a distance, not because of acuity but because of complexity. She said that our visual environment is very complex and can be difficult for a child with CVI to understand. The further away an object is the more visual information is available therefore presenting a complex visual environment. She went on to clarify that it is incorrect to say a child with CVI sees differently from day to day. If a child sees one minute and not the next it could be because the environment has changed rather than their vision changing. This also stood out for me because I noticed this in Aly as well. Sometimes it appeared that she could see then the next minute or day her reaction changed or she had no reaction at all. It was very confusing, especially because when didn’t have the CVI diagnosis at that time.

Janet went on to describe visual behaviors caused by complexity. Gazing at the ceiling:a child’s eyes may be fixated on the ceiling which offers the least complex environment. Non-purposeful gaze (staring off into space). Difficulty looking at faces: a child may not look at your face due to complexity of the human face. Facial expressions constantly change, hairstyles change, and glasses change the facial image, she said. The first face the child may look at would be the parent’s face, according to Janet. Another behavior of visual complexity is the appearance of inconsistent visual performance: the child appears to see better at some times than others. Is this because he is familiar with his environment or because one environment is less visually complex than another? The last characteristic of visual complexity is difficulty using two senses at the same time: a child with CVI may have difficulty listening and looking at the same time so the child may look away while listening.

The final characteristic of CVI, according to Janet, is visual novelty. Children with CVI may not be interested in a new toy because of visual novelty. The child has favorite toys that they have been looking at that they understand. New toys should have characteristics of old toys in order to build up his repertoire of toys, Janet said.

After describing the characteristics of CVI, Janet continued by discussing assessment and intervention strategies. She said children with CVI exhibit these visual characteristics at varying degrees. No child with CVI is alike, that is why it is important to assess which characteristics a child is exhibiting and to what degree. Only after careful assessment can appropriate interventions be planned, she said. In young children, these visual interventions may encourage visual attention thus improving visual performance. This process involves ascertaining what attracts the child’s visual attention thus encouraging the child to “look.” Through the use of vision, increased synapses are developed in the visual areas of the brain. Increased firing of the neurons across the synapses increases visual capacity, according to Janet.

Janet goes on to describe assessing children with CVI using Dr. Roman-Lantzy’s CVI Range. She said the CVI Range assesses children’s use of vision on a scale of 0-10, 0 referring to no use of vision and 10 referring to near normal use of vision. The CVI Range is a continuum of CVI characteristics. For example: being overly attentive to lights is 1-2 on the CVI Range, less attracted to lights with the ability to be re-directed is 3-4, light is no longer a distracter is 5-6. Dr. Roman-Lantzy separates visual functioning into three phases, added Janet.

Phase I encompasses levels 0-3 on the CVI Range. The goal of Phase I is to build consistent visual behavior for those children who barely use their vision at all, except in the most controlled environment. Visual characteristics of Phase I include: visually attracted to one color, visally attracted to targets that have movement properly, attentive to lights, strong visual field preference and visually attends in near space only. Intervention for Phase I include: objects that are only one color and/or have reflextive properties, objects usually placed within 16 inches, objects placed in preffered visual field, objects placed in front of black background, light source placed behind the child, objects should not have a sound component and environment should be quiet.

Phase II encompasses approximately 3+ to 7+ on the CVI Range. Children will exhibit more consistent eye to object contact with objects of their favorite color. Children will begin to look at objects with one or two additional colors. Children will begin to look at simple patterns. Goals for Phase II include: integrating vision with funciton, encouraging child to use vision to make something happen such as pressing a lever to activate a fan or vibrating toy, encouraging child to combine vision with touch, swat, reach, grasp or even eye-gaze in order to accomplish a task; improving ability to maintain visual contact with people and objects while low levels of familiar background sound is present.

Interventions for Phase II include: using objects such as cups in preferred color to facilitate looking and reaching, adding preferred colored mylar to objects (toothbrush, cup, switch) to facilitate looking and reaching, using objects with preferred color and one or two additional colors, choosing toys that have similar characteristics of a favorite toy to increase repertoire of toys, placing objects on increasing complex backgrounds and placing objects on the light box (food, cups, plexiglass objects).

Phase III encompasses approximately 7+ to 10 on the CVI Range. Children in Phase III use vision to perform most tasks, demonstates visual curiosity in settings or environments, have more normal and functional visual fields, demonstrate difficulties with complexity in pictures and symbols, view distances beyond 10-15 feet, and have difficulty viewing highly complex visual environments.

Interventions for Phase III include: sorting activities which teach concepts of alike and different based on important visual features, discussing visual features to reinforce student’s awareness of like and different features, disembedding salient features (discriminating features from a background or surrounding environment) which creates meaning and broadens visual and cognitive schemes. This skill helps students generalize information (not all round objects are balls) and better understand their world.

Janet described how pictures made from photographs can be used in Phase III. Take pictures of familiar, everyday objects such as cups, toothbrush, favorite toys. These pictures should be taken on a black background with only one object present per picture, she said. Pictures should be mounted on black paper. Books can be based on themes such as “foods I eat,” “things I wear,” or “toys I like.” Adding complexity to pictures is an important intervention in Phase III, according to Janet. Make a book with the following progression: one large Clifford on a black or white paper, one smaller Clifford on a white paper, one large, then small Clifford on a slightly complex background, add Clifford to more and more complex pictures. This technique can be done with any favorite characters, she said.

Additional interventions for Phase III include: reducing complexity in two dimensional images or symbols (adding complexity gradually as with the Clifford example), block out excess detail on a page of images or symbols, highlight or outline critical features in symbols or pictures (for example: outline letters in yellow or red). Start by “bubbling” the letters then use outlines, dotted lines and end by highlighting a salient feature of the letter.

Interventions for new or over-stimulating environments include: familiarize students with the enviroment, highlight landmarks such as placing a red triangle on a drinking fountain (at a later time the red symbol can be removed and the drinking fountain becomes the natural landmark), ask the student to find these highlighted landmarks, travel to both known and new locations and compare the salient environmental features such as tree vs shrub, house vs school, bus vs car, and increase the distance to specified targets.

Janet continued by describing the importance of using Dr. Roman-Lantzy’s CVI Range to assess children with CVI. It is imperative to provide interventions that are at the child’s level of learning to use his vision, she said. Interventions are chosen to encourage and facilitate use of vision. Interventions are designed to meet, but not to exceed, the assessed level of function. If interventions are chosen involving visual targets that the child avoids looking at, he will not be practicing using vision. Continual assessment guided by the child’s responses and improvements allows for changes in interventions, Janet said.

One of the most profound things I took away from Janet’s presentation was that assessing children using Dr. Roman-Lantzy’s CVI Range to guide appropriate interventions is an approach, not a therapy. It is something that you work into your everyday life. The strategies should be integrated into daily activities such as eating, bathtime, learning activities, self-help and leisure activities rather than done in isolated meaningless activities. The integration of these interventions throughout the day will promote meaningful opportunities for the students to use their vision throughout the day, according to Janet.

Janet noted that if a child with CVI has a favorite color (red) or toy (elmo), be sure to present the child with as many red things to see throughout the day. Wrap their bottle in red, use red cups, bowls, red toys. By doing this, each time the child sees that red they are firing a neuron and creating new connections. By repeating these daily activites using the same toys and material you are retraining your child’s brain to process what they are seeing. The brains of infants and young children are extremely plastic. Now is the time to make these new connections. I have seen first-hand how intervention strategies can make a difference by the improvements my daughter has made. She went from only seeing certain colors and not focusing and tracking to now she sees all colors and things that aren’t moving. When still have a long way to go but I know there is hope my daughter can learn to use her vision.

Janet Salek is a teacher for the visually impaired. She has a private practice in on the Gulf Coast called Vision Resource Services. Last year Janet held a five-day conference on CVI where she trained a few professionals on how to give assessments to children with CVI. She is holding a 1 day CVI Training on December 6 in Hattiesburg. For more information on the training contact Toni Hollingsworth at toni.hollingsworth@usm.edu.

 

Lily the LightAide

Lily the Backpacking LightAide has finally made her way to our house! After spending two weeks with a family in Colorado, the LightAide was shipped to us. We will be able to use the LightAide for two weeks then ship it to the next selected family. The LightAide is an educational tool that uses lights to engage children with visual impairments and other special needs. The LightAide is preloaded with activities that range from easy to hard and teach visual efficiency (tracking and focusing), language arts and mathematics. It also includes interactive games.

The LightAide arrived in a box with the device and accessories inside. It came with two tactile lenses that are interchangeable and cover the LED lights. It also came with two switches that can be plugged into the side of the LightAide. The switches are used with the different activities to allow the child to control how the lights move across the screen to create shapes, patterns, designs, letters and numbers. The package also included a setup guide and activity workbook with instructions on how to properly use the LightAide during each activity. The LightAide was very easy to set up and use.

Today was the first day Aly got to use the LightAide. She loved it immediately. She was very drawn to the light and movement. For Aly, the switches helped with her purposeful movement by utilizing cause and effect. When she pushed the button the shapes would change or the lines would move. Because Aly has made big improvements with reach and purposeful movement, she did very well using the switches. After a little while, however she would want to pick it up and chew on it. The more we use the LightAide and the switches the better she will learn how to properly use them.

I’m very excited about sharing the LightAide with Aly’s therapists and teachers. I plan to work with Aly using the LightAide a few times each day for 30-45 minutes. I want to work through all of the activities in the workbook. Each activity offers a learning experience that is irreplaceable. After the six families have had time with Lily the LightAide, the readers of wonderbaby.org will select one family to keep the LightAide as a gift. Aly is also receiving a backpack filled with toys from WonderBaby for participating in the program.

For more information about the LightAide visit http://www.perkins.org/store/lightaide/.

For more information about the Lily Backpacking LightAide Program and to read about the other families Lily has visited check out http://www.wonderbaby.org/articles/backpacking-lightaide-program.

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New Beginnings

Aly’s journey has continued to take us in new and exciting directions. A lot has changed over the past couple months. Aly got fitted for hearing aids in June and we have been working on getting her adjusted to them and starting her with at-home hearing therapy through Magnolia Speech School located in Jackson. Over the summer we learned Aly would be able to attend the preschool program Project IMPACT at T. K. Martin Center for Technology and Disablity in Starkville on the Mississippi State University Campus. This is the first year they are having a class for children as young as one. Aly’s class started mid-August and are on Tuesday and Thursday from 10:30-12.

Through speaking with her teacher and others at the school, I learned about a pediatric therapy center in Starkville that has a specialized therapy for children with feeding problems. Starkville seemed to be the best place for Aly, so we made the decision to move in order to be closer to her school and therapies. We have been in Starkville now for almost three weeks and Aly is starting her new therapies this week. We’re still waiting to get a time for phhysical therapy. On Monday, Aly had speech therapy at 10 and occupational therapy at 1. She spent the first day in each getting to know her new therapists and having them get to know her. It will take some time to get used to this back-to-back time slot. Each therapy lasts for an hour and we have two hours in between to eat lunch and get a quick nap in if Aly is up to it.

Aly’s older brother Triston, who will be three on Halloween, is also having to adjust to a new schedule. He gets into everything at her therapy, but there are times he can be a big help by participating. Like I tell her therapists, having big brother running around, making noises and playing with her is what she is used to at home, so it only makes sense that he would participate in her therapy. Triston has been a trooper and really seems to like his new house. Going to doctor appointments and therapies has been a part of his life for so long it has become the norm.

One of the most exciting things about Aly’s new therapy center is that her occupational therapist specializes in Cortical Visual Impairment (CVI). Aly was diagnosed with the neurological visual impairment through an MRI at five months old. Her vision has gone from appearing to be totally blind (having no light perception and no tracking or focusing) to now she can focus and track and see with better ease and understanding. It has taken a long time to get to where she is now and there is still much area to be improved on, but having a therapist who is familiar with lightbox therapy and CVI will make a huge difference. Her therapist is also going to be working with Jonathan and I on modifying Aly’s room and our house to be better suited for Aly’s learning needs. One thing I am hoping to gain from her new therapist is an at-home program that will focus on vision. Her other therapists (hearing, feeding) have already started her on programs and I have weekly goals/homework that I work on with her. The job of a parent with a child who has special needs never ends!

Aly’s occupational therapist will be doing paperwork to try to get Aly a lightbox and lightbox supplies for home use. I believe having a lightbox and a program to follow will take Aly to the next level. Through my frequent online research I came across a new product called the LightAide. “Bright and engaging, the LightAide creates a variety of interactive displays of color that support core learning goals and help instill the building blocks of literacy and mathematical concepts in learners with low vision, cognitive disablities and other special needs.” WonderBaby.org is hosting the Backpacking LightAide Program. Six families will be visited by Lily LightAide. Each family will get to hold on to the LightAide for two weeks to play with it and find out if it’s right for them. When the two weeks are up they’ll send it off to the next family. Each family will tell the world about the LightAide through blog posts, video uploads and socail media. At the end of the event all WonderBaby.org readers will get a chance to vote for one of the six families to receive the LightAide as a gift.

If our family is selected to participate in Backpacking LightAide Program it will be a great opportunity to experience a new piece of equipment and bring new readers to my blog and CVI website. This could be the push I need to finish my website and start working on my blog more. I am also making great connections locally in the CVI world and hope to find some partners for the Alyssa Greer CVI Foundation. Because of funding, partnering with an existing non-profit agency may be my best bet to get the foundation off the ground. I am hoping to be able to attend a conference at The University of Southern Mississippi on October 4. The main points of the conference are Understanding Cortical Visual Impairment, Hearing Loss and Dual Sensory Impairment, Increasing Participation Through Positioning and Tactile Input and Feeding Challenges in the Special Needs Population. I couldn’t have put together a better conference covering all areas of Aly’s needs if I tried! I will be able to learn so much and make even more connections by attending this conference.

I told you a lot has happened in a short amount of time! And that’s not all. I’m working very closely with Aly’s Early Intervention Coordinator to make sure Aly has every service available to her. After moving to Starkville, I started hearing about the Children’s Medical Program. Aly’s nurse at her new pediatrician’s office asked if Aly was enrolled in the program. I told her I had never even heard of it. Of course I went home and researched it myself and it appears to be another resource Aly qualifies for. According to the website, The Children’s Medical Program provides medical and surgical care to children with chronic or disabling conditions. The service is available to state residence free of charge under 21 years of age. “If your child was born with a disabling condition, or developed a disability or chronic illness, the program may be right for your family. CMP can organize care for your child’s condition, provide some equipment and medicaitons, and arrange for physical, occupational and other therapies.”

I’m also having Aly’s coordinator look into getting her services through the Deaf-Blind Project based out of Hattiesburg. I’m not very familiar with what services they offer, but I’m hoping they will be able to provide at-home therapy or family training in the area of deaf-blindness. Because Aly has visual and hearing impairments combined, it creates such severe communication and other developmental and educational needs that they cannot be accomodated in special education programs soley for children with deafness or children with blindness, according to the website. I still get blown away by how many services are available to families of children with special needs in the state. And all of these services are provided free of charge!

As a mother, it is my job to make sure my children are taken care of, and because my daughter has special needs, I must take on a new role as an advocate. Being a proactive advocate and providing Aly with every opportunity availabe is the best thing I can do for her. Aly’s journey is just beginning. We have already come such a long way and when I think about where she will be this time next year in her progress it brings me to tears because I have seen first-hand what early intervention has done in my child’s life. She has gone from only having therapy once a week for an hour and a half to now having an hour of physical therapy, occupational therapy, speech therapy, feeding therapy, hearing therapy and school twice a week. She has something to do every day during the week, and she is only 15 months old. She is my inspiration and my motivaiton.

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Aly’s Journey

This blog has been something I’ve wanted to start for a very long time. I have finally reached a point in Aly’s medical journey where I feel comfortable in her diagnosis. For a long time we didn’t know what to expect or what the doctors would find from their numerous tests. But we have been fortunate to defy the odds and come through with hope that Aly will continue to make progress. Aly’s diagnosis includes Cortical Visual Impairment (CVI) and Microcephaly (small head). She also has mild hearing loss and recently got hearing aids. Her other medical conditions include developmental delays, failure to thrive, congenital muscle disorder, congenital anomaly of sclera and nystagmus. What all of this boils down to is that Aly was born with a brain that was not completely formed. She is missing significant white matter and portions of her other lobes such as temporal, occipital and frontal. Her corpus callosum (the part of the brain that connects the right and left hemisphere) is also thinned. Her brain malformations are the cause of her CVI, Microcephaly, developmental delays and possibly her hearing loss. It is unknown what caused this malformation. She was simply born this way.
I knew very early on that Aly would be different. I couldn’t quite put my finger on it, but there was something about her behavior that wasn’t “normal.” She didn’t interact like other newborns. At two months old I started to notice her eyes moved from side to side uncontrollably. She couldn’t focus or track objects because her eyes were always in motion. My mother was the person who first told me about nystagmus. I knew what I had to do as a parent was get answers immediately. She was referred to a local eye doctor who then referred her to a pediatric ophthalmologist in Jackson. Dr. Mungan confirmed that she had nystagmus and told us it was because of vision loss. Her eyes were completely healthy, therefore the doctor said her vision loss was neurological and ordered an MRI. We were told by Dr. Mungan that Aly was totally blind with no light perception on October 16, 2012. My world was turned upside down that day. I let the shock sink in, but I refused to let it break me down. I had to be strong for my daughter. I had to be her voice since she couldn’t speak for herself at the time. I had to move forward and get answers.
The next step was getting her MRI and seeing a neurologist. Dr. Mungan also referred us to a geneticist. On November 13, 2012, Aly was seen by her neurologist, Dr. Lee. He told us her MRI was abnormal and that she had Cortical Blindness and Microcephaly. He also said she has dysmorphic facial features (midline and mouth). He briefly described Cortical Blindness. He referred to her brain as a computer and her eyes as a camera. He said the camera was working fine and collecting the images and transmitting them to the computer (brain), but the there was a problem in the way the computer processed the images. The analogy made sense, but there were still so many unanswered questions. Maybe it was genetic and we would finally get answers from genetic testing.
Aly had blood drawn for genetic and chromosomal testing in February. It wasn’t until April 16 that was finally got the results. Everything came back great. She had no known genetic disorders or syndromes. I was completely relieved to say the least. I had been told repeatedly for the past several months by her pediatrician and specialists that she had a genetic disorder. They couldn’t put their finger on a certain one, but they seemed so certain. I was never convinced it was genetic. I knew there was nothing else going on and it was strictly neurological. I still didn’t have the answers I was looking for, but I finally came to terms with the fact I may never know the cause of her conditions, and that was okay. She was my Aly. No condition will ever define her. She has continued to prove her doctors wrong. They said she would never see, but she can, and that is such a blessing.
For a long time it appeared Aly was blind. Her nystagmus seemed to get better, but she still wasn’t focusing or tracking. She would not smile or laugh or look at me. She looked past me, as if I wasn’t there. That was the hardest part, that and not seeing her show emotion. I had prepared myself at the time that my daughter would be blind. I contacted First Steps Early Intervention through the State Department of Heath. Her First Steps coordinator, Constance, scheduled an evaluation to determine which services she would need. That evaluation was done in October 2012. At the time she was not doing much. She was five months old, but ranked in at the development of a two month old. From that we determined she needed physical therapy, speech therapy and occupational therapy. She started out with only physical therapy and the other two were added a month later.
At the time she started in physical therapy in December 2012 at the age of seven months old, she wasn’t rolling, sitting or bearing weight. She had a little head control, but not very good. Her vision started improving around five months old. It seemed as though she would see certain things and track, but it was never consistent. She finally started smiling and laughing at five months old, as well. As her vision improved so did her nystagmus and head control. She finally start holding up her head now that she could see objects. It’s very hard to explain, but it was as if overnight her vision kicked in. I met with a teacher for the visually impaired (TVI) in December. She knew a lot about CVI and was the first person to tell me about her diagnosis. Cortical Blindness is more widely known as Cortical Visual Impairment because the children are rarely totally blind. She opened me up to a whole new world of endless possibilities. She was the first person to tell me there was hope, that my daughter could learn to see. That was all I needed to hear to get motivated in informing myself on CVI as much as possible. I spent weeks searching the web for any and all information about CVI.
Everything I learned about CVI was translated into her different therapies. Children with CVI have very specific characteristics and learning styles. Once I knew how my daughter could see, I understood what I needed to do to improve her vision. And since then she has made drastic improvements. Her therapists have been wonderful with learning about CVI and things they can do in therapy to help her. They got her a light box to be used in her therapy. Not only did her vision begin to improve, but also her motor skills and physical skills. She started rolling over at eight months old and by that time she had great head control. By the time she turned one on May 22, 2013, she was rolling everywhere, sitting up with her hands out for 30 seconds and saying a few words. Her first word was “bubba” at around ten months old. She mostly said “b” sounds. Her words are still limited to “bye bye” and “ba ba.” She also makes vowel sounds and her laughing has escalated.
Over the months Aly’s hearing started to become a reason for concern. She had a hearing test ordered in March. At the time, she had mild to severe hearing loss, but the doctors believed it could be due in part to fluid. The ENT said she would need tubes and that could potentially improve her hearing. She had tubes put in on May 16 and had another brainstem hearing test. The audiologist, Dr. Cooper, said the tubes improved her hearing, but she still had mild hearing loss and would need hearing aids. She was fitting for the molds that day and got her hearing aids a month later. Only recently have I come to terms and understood what her hearing loss means to her progress. The audiologist explained that with mild hearing loss there are certain sounds that she cannot hear. So without her hearing aids she would learn to speak the way she hears, putting her at a disadvantage. It hasn’t been that big of an adjustment now that she has hearing aids. Her impairments do not define her, they simply make her unique.
Where we are today in Aly’s journey is that we are in the process of setting up her hearing therapy as well as trying to find her vision therapy and resources. I have contact a preschool program in Starkville for children with multiple disabilities about getting Aly enrolled. There is a chance she could start in August at 14 months old, but they may not take her until she is 18 months old. This preschool will be a huge change for her as well as for me. I won’t be allowed to stay and watch her the way I do with her therapies, so that will be difficult. I love being involved in every step she takes along her journey. I love watching her discover and try new things. I try not to focus on what she cannot do but rather what she can. I say “try” because I must admit that it hasn’t always been easy, especially when I see children her age walking, talking and playing with toys. I know Aly will do all these things in her own time. She has taught me to not rush through life, to take a step back and focus on the important things, such as family and love. It’s the little things in life that define who we are. I appreciate so much more every laugh, every smile, every grasp of a toy and clap of a hand. These small moments bring her one step closer to the rest of her life, and her life will be beautiful, I guarantee.