Literacy Lollapalooza

This past spring, our family attended an event at our local Children’s Center for the Visually Impaired called Literacy Lollapalooza.  This all day workshop type event included a variety of sessions designed to promote literacy in children with visual impairments.  One of the activities that was talked about in a couple of the sessions was making your own book, specifically making a book about something in your childs life, an “experience book.”  You could write a book about a visit to grandma’s or a trip to the zoo.  You could make a book about a daily routine like making dinner or bath time.  You can draw the pictures for your book, use real photographs or even cut pictures out of ads and magazines.  Let your child help as much as possible by drawing or pasting pictures, putting pages in order, even providing the words for the story by telling you what a picture is about.

The book we made with Lyra is called Lyra Plays Outside.  It’s about all the things she has to do before she gets to go outside and play, like putting on sunscreen and her hat. 🙂  Lyra LOVES her new book!  She asks to read it a million times a day and she is already beginning to memorize it.  Sometimes she can predict what the next page is going to say and says it out loud before I have a chance to read it. We made 2 versions, one on blue card stock and one on yellow card stock.  We weren’t sure which one she would prefer as far as contrast and glare.

To see what her storybook was about, click below to watch the “movie” inspired by the book.  😛 LOL

Lyra Plays Outside

Speech and Language Update

We recently updated Lyra’s speech and language goals on her IFSP.  Her speech therapist has been coming weekly for the last 12 weeks.  She’s doing great and we’re considering changing her sessions to biweekly instead of weekly. She went above and beyond meeting her first set of goals, so I think we can set our expectations a little higher this time.  🙂

These are her previous goals, which she has met:

  • Will name body parts
  • Will identify family members by name
  • Will express greetings and affection with her family

These are her goals for the next 6 months:

  • Lyra will demonstrate understanding of early descriptive words (e.g. sizes, colors) with 80% accy in a field of 3-4 choices
  • Lyra will produce attribute+noun (e.g. big shoe, blue ball) phrases in therapy and by parental report.
  • Lyra will follow 2-step commands in context with 80% accy.
  • Lyra will use personal pronouns (I, me, my) with 80% accy.
  • Lyra will produce 40-50 spontaneous 2-4 word phrases of various types in a 45 minute session.
  • Lyra will produce an age-appropriate array of communicative functions in her spontaneous utterances:  labeling

Light box

Lyra has been been working on activities using a light box during her last few sessions with her TVI. Specifically she has been working on shapes and color sorting. Using the light box really motivates her to sustain her attention to an activity for a longer period of time. It makes the learning activity more fun and visually stimulating.

Illuminating the colors and shapes makes them easier to see. Because she doesn’t have to work so hard to SEE the objects, she is able to focus more of her energy on learning the actual colors and shapes, i.e. cognitive learning.

Here is some useful information I found on the website for the Texas School for the Blind & Visually Impaired.


By: Michelle Clyne

Please take care to incorporate the use of the light box into some sort of routine…..teach parents, caregivers and other teachers how important this is, otherwise, it’s just “VI time”, and that is only good for the VI teacher, not the students we serve. No offense to anyone, please!

50 WAYS TO USE A LIGHT BOX (Lyrics with apologies to Paul Simon)

For eating, use the light box as a table:

  1. Juice in a clear cup or bottle will glow and encourage reaching.
  2. Scatter m&ms on the surface (know your audience!)
  3. Scatter cheerios on the surface
  4. Scatter small or large crackers on the surface.
  5. Set a table by having child match place, cup and spoon with a transparent outline of these objects on the light box.
  6. Set plate with slice of bread, container of light colored jelly on a light box, (apricot suggested), help child shift gaze from jelly jar to bread as he or your takes jelly to spread on bread.
  7. Jello in clear container will glow.
  8. Help child mix colored soft drink mix into a clear glass of water and watch the color develop.

Art, using light box (covered in clear plastic as easel or table:

  1. Finger paint onto parchment paper with foam paint.
  2. Paint with dark colored pudding
  3. Paint with whipped topping on red or blue transparency.
  4. Use watercolors on parchment paper.
  5. Sprinkle powdered tempera paint on parchment paper; help child spray on water and watch color spread and swirl.
  6. Roll clay into strings and lay out in interesting shapes on light box.
  7. Use Wikki Sticks to make raised line outlines.
  8. Use “Smelly” markers on tissue paper.
  9. Make a necklace using beads and string (APH)

Simple reaching:

  1. APH “Spinner” motivates reaching to start or stop the spinner.
  2. Slinky (connected to handle and hanging over lighted surface, wrap other end onto student’s wrist to encourage arm movement.
  3. Stack up blocks so that simple arm or leg movement knocks them down.
  4. Leave a koosh ball on the light box
  5. On a large light box, put pressure switch attached to a vibrating pillow. Position the child so that slight pressure on the switch makes the pillow vibrate. Help the child shift gaze between the pillow and light box.

Movement difficulties:

  1. Adult helps with any of the activities here when the child signals the adult to continue
  2. Student uses adaptive switch to turn on the light box.
  3. Small infants can be positioned prone on the light box for Tummy Time.
  4. In supported 90 degree sitting, a small child can crinkle mylar paper under their foot or feet while they rest on a light box.
  5. Have child eye point to choose 1 of 2 items lined up on light box.

During class:

  1. Make transparencies of circle/calendar time pictures and show on the light box.
  2. Make transparent digital pictures of classmates and familiar adults, show them using light box, asking child to identify “so and so”.
  3. Have child construct daily schedule on light box using pictures made into transparencies.
  4. Count manipulatives lined up on light box.
  5. Tracing letters onto light box. Bold marker on lightweight paper taped to light box.
  6. “Sense of Science” (APH) overlays can encourage gaze shift, recognition, etc.
  7. Do sorting activities on the light box
  8. Choose rhythm instruments by the outline they make on the light box.
  9. Use light box to highlight dark lines that need to be cut for scissor projects.

Daily Living Routines

  1. To get dressed, put sock and shoe on light box, have child eye point to item needed next.
  2. Put wash cloth and tooth brush on box, ask child to choose which they want to do first. Choose with eye pointing, finger pointing, naming, switches……
  3. Before going to doctor, store, etc, show child transparencies of those activities on light box.

Make believe play

  1. Put dress up items on light box. Have child identify items and choose how they want to dress up; i.e. baseball cap vs. construction hat.
  2. Put play hammer or similar object next to play area so that child can choose to play house or play construction.
  3. Trace outlines of make believe characters/action figures to make pictures of them, then use picture to write a story.
  4. Tell stories with pictures by using real objects on light box to create a “shadow Puppet” type of performance (for example, twigs make trees and a “Barbie” type doll becomes Goldilocks).

Other activities

  1. With and adapter, look at a “Discovery Light Book” on the light box.
  2. Play “Break the Ice” on a large light box.
  3. Play hands only “Twister” with a transparent color circle overlay on the big light box.
  4. Play table top hockey (quarter with fingers) on the large light box.
  5. Make a woven pot holder putting the loom and loops on a dimmed light box.
  6. Thumb wrestle with a friend on the light box

Early Session with TVI and OT

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

Speech Evaluation & IFSP Update

‘Ehhhwhoa’ and ‘Buh-bah’= Hello and Goodbye

Lyra’s speech development is still delayed, and she has yet to begin receiving actual services from a speech therapist. This will begin next week. She was evaluated in October, but the evaluation was incomplete. In addition to that, staffing issues caused a delay in beginning services, so we had to get another evaluation completed by a different speech therapist. It has been frustrating to say the least. Hopefully everything will go as planned next week and Lyra can get started.
At this point, she’s just making gestures (thank goodness she learned a bit of ASL) and grunting. But she’s trying to speak- she’s using different inflections in her voice and chaining sounds together. She plays a game on the computer called ‘Giggle’ and when she wants to play it, she says “guh-guh”. ‘Hello’ in Lyra-speak is “ehhhwhoa”. Goodbye becomes “buh-bah”. She knows what ‘hot’ is, and to her it’s ‘haaht’. The word ‘yeah’ is a long drawn-out, whispery kind of “yeeaahhh”. It’s all about communicating, and Lyra is clearly displaying frustration in her ability to do that. Like any parent, I understand my child’s unique vocabulary better than anyone else, I just wish that Lyra could be understood by everyone else too.
You can view her Speech and Language Evaluation and IFSP by clicking the links below.

Lyra’s Speech Evaluation

Lyra’s Updated IFSP

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Update on Vision and Motor Skills

Lyra wears her glasses now all the time, rarely taking them off except for at night. This is wonderful, however now they are nearly too small for her. They are beginning to leave marks on her nose where they are too tight, and they barely reach over her ears. This STINKS! I can’t believe we are already going to have to spend another $200+ for a new pair of glasses. Eventually, thank goodness, she won’t be growing so fast and her glasses won’t need to be replaced as often.

At close distances, those less than 6 feet or so, she seems to be doing great. I don’t notice her putting books right up to her nose anymore. She does stand/sit fairly close to the TV, but then again, so do many fully sighted toddlers. 🙂 I’m anxious to see how she’ll do this spring when she can play outside. How far away can she see a tree, or a car driving by, or a cow, or a flower, or all the other outside things that she hasn’t learned about? 🙁

Her next appointment with her pediatric ophthalmologist is in March. (YES! I finally learned how to spell that word correctly) Anyway, we’ll probably try to wait until then to get her new glasses, in case her prescription changes. Everything else looks good. I rarely see the nystagmus anymore and we have not seen her strabismus coming back.

It is much easier to tell you how Lyra is doing with her vision, fine motor, and gross motor skills by showing you. Here are 3 different videos demonstrating Lyra’s various abilities and quirks. You’ll see in the first video, based on the appearance of the floor, that there’s definitely a reason why the nursery workers at church have nicknamed her the Platinum Tornado. 😀
Notice in the second video how inconsistent her O&M skills can be. She uses her vision and weaves through a room full of toys perfectly one time and then a minute later walk through the exact same path and fall all over the place. It’s hard not to laugh. She is too cute!

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Orientation and Mobility Assessment



Lyra had her first Orientation and Mobility assessment on October 16th. She was 17 months old. I had been and still am doing a lot of research on Orientation and Mobility, and the benefits of the services to infants, toddlers, and preschoolers. Orientation and mobility(O&M) is 3 things: knowing where you are, knowing where you want to go, and knowing how to get there.

Do kids with albinism need these services? Maybe…maybe not. It depends on a lot of things. It can’t be determined based on visual acuity alone. It depends on how they are using the vision they have, how they are moving in their environment, and if they are doing this safely and independently. It’s important to know that many children with low vision will figure out how to move around safely and independently in familiar places like home or daycare, without difficulty. However, behavior in unfamiliar environments can be surprisingly unpredictable. Regardless of your child’s visual acuity, it is very important that your child receive a thorough assessment by a certified orientation and mobility specialist. If a child is moving around in his/her environment, whether that’s rolling, scooting, crawling, pulling up, or walking, he or she could potentially benefit from O&M services. Continue reading “Orientation and Mobility Assessment”

Find Early Intervention Services

Lyra has been receiving Early Intervention(EI) services since she was about 5 months old. The level of services and method of services vary from child to child and state to state. These services are provided under the federal law IDEA (Individuals with Disabilities Education ACT). I have come across parents that have never heard of EI services or others that are receiving inadequate services. Children with albinism are AUTOMATICALLY eligible for services based on medical diagnosis. All children should have the option to receive these services. Unfortunately, even with the federal law, some kids don’t get the opportunity. Sometimes its hard for parents to find out who handles the services for a particular state. Here is a website with lots of information about Early Intervention and contact names and numbers for EVERY STATE.

National Early Childhood Technical Assistance Center

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