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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