Vision Update – 2 years 3 months

Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t want to buy her a new pair of glasses right then, knowing there was a chance that her prescription might change in September.  So, I called Lyra’s PO to see if they could get her in sooner. Luckily, they were able to schedule her an appointment later the next week. In the mean time, they said it was okay for Lyra to wear her old glasses…just until the appointment.
The day before Lyra’s appointment…the missing lens to her other glasses magically appeared. There it was, just sitting on the end table in the living room. I don’t know how it got there. We asked Rebekah and Dominick and neither of them knew how it got there. I suspect Lyra may have found it on the floor somewhere and just picked it up and put it on the table, but as much as I GRILLED her…she just wouldn’t confess…lol. 😛   Maybe it was the dog.

Lyra’s check-up went really well. They dilated her eyes and all that fun stuff. Her refractive error didn’t change, so her prescription remained the same. So much for my reasoning for Lyra needing a sooner appointment. 😛 Dr. Grin did note that Lyra was focusing on objects/noisy toys at a further distance. She was looking at and paying attention to the wiggling barking stuffed dog on the shelf across the room. …well okay then. 😛
Regarding Lyra’s nystagmus, Dr. Grin said that when she is focusing on something close up, her nystagmus REALLY slows down. Since the appointment, I’ve been paying attention to that more, and I agree. I’ve even noticed that for very brief moments when she’s focusing on something, her nystagmus stops completely.  Her next appointment will be in 6 months.

Dr. Grin did not, nor does she ever give us any type of visual acuity numbers for Lyra. I’m okay with that. She said she’s seen children have a visual acuity of 20/200 and then at an appointment 6 months later that same child see at 20/80. Those numbers fluctuate and they are not a definitive or complete indication of what Lyra sees.  However…just for the sake of numbers, we do now have a number.  Last month at the NOAH conference, we had the opportunity to get those visual acuity numbers. Doctors from the University of Minnesota were seeking volunteers to participate in a research study. It consisted of some basic information forms and a questionnaire and also included a vision test. They used a preferential looking test, specifically Teller cards, and based on that test, at that time Lyra’s acuity was 20/130. Those numbers mean more to other people than the do to me really. When people ask us, “So what IS Lyra’s vision like?”…that number is really what they’re asking for. So now I have a number I can give them…instead of just a range. I know her acuity may be better or worse than that on any given day depending on the environment and situation, but knowing whether its 20/100 or 20/360 doesn’t make any difference or serve any purpose. For those people who ask and just HAVE TO know… 20/130 is what I’m goin’ with. 🙂

Just over the last month I’ve actually had a more than a few opportunities to respond to those people, asking how well Lyra sees. After talking to those people and just thinking about comments people have made in the past, I’ve come to a conclusion… I think Lyra’s glasses are misleading. I think a lot of people assume that with her glasses on, she has 20/20 vision. When I’ve told people that Lyra’s vision is 20/130 WITH her glasses ON, many of them are shocked. These are people who have known Lyra since birth. A common response is, “Really! I had no idea her vision was that bad.” People knew Lyra had vision problems but apparently thought her glasses “fixed” all of those problems. It just really makes me wonder now, how many other people in Lyra’s life think this.

I can understand how easy it would be to think Lyra sees better than she does. She does function very well and puts on quite an act, fooling people into thinking she has perfect vision. I admit, sometimes she has me fooled, forgetting that she has any visual impairment. Then one day, Lyra walks up to a pile of laundry sitting on the couch and says, “Hi Daddy!”…and I’m reminded, oh yeah, she can’t see perfectly. 🙁 Fortunately those sad moments are rare. Honestly, MOST moments are happy moments, when the focus is on silly, beautiful, sweet Lyra…and not on her visual impairment.

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


Albinism Information

  • NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
  • International Albinism Center
  • Albinism International– An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.
  • Albinism Fellowship UK– An organization that aims to provide information, advice, and support for people with albinism and their families.
  • SARA Foundation (Supporting Albinism Research and Awareness)- A site created to help parents who have children who are diagnosed with albinism.
  • Positive Exposure– Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.
  • The Hermansky-Pudlak Syndrome Network Inc.– The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

  • American Nystagmus Network– A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
  • Vision for Tomorrow Foundation
  • Hadley School for the Blind– Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.
  • The Low Vision Gateway– A comprehensive list of low vision resources from around the world.
  • Vision of Children– Information about current medical research, outreach, and education.
  • NAPVI (National Association for Parents of the Visually Impaired)- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Websites/Blogs of adults with albinism

Commercial Websites

  • Solar Eclipse– Sun protective clothing
  • UV Sungear– Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.
  • Baby Ride– Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.
  • Sun Togs– Sun protective clothing for all ages and cool kids sunglasses.
  • North Solar Screen– Various types of window tinting and window shades.
  • Llumar Window Film and Window Tint– Professional glass film/tinting for home or auto.
  • Industrial Shadeports– Custom build shade structures.
  • Protect-a-Bub– Sun protective clothing and accessories.
  • One Step Ahead– They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

  • SENSwitcher– Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.
  • Seedlings– A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.
  • Library Reproduction Service– Large print books for children and adults and Large Print reproductions of educational materials for special needs students.
  • Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.


New Parenting Book Available

The new book, “Raising a Child with Albinism: A Guide to the Early Years” is now available for purchase.  It is published by the National Organization for Albinism and Hypopigmentation (NOAH) and is the first of its kind.  This book will be an invaluable resource for new parents of a child with albinism.  It truly is a great book.  I’ve already bought 6 copies. 😛 I am also one of the 20 contributing writers and one of the 8 contributing photographers.  🙂   You’ll find pics of my Lyra on pages 41 and 88.

Here is the book description from the NOAH website:

Raising a Child with Albinism:
A Guide to the Early Years is a 200-page volume containing contributions from close to 20 different writers. It provides a singularly authoritative source for new parents of children with albinism. Edited by NOAH member Susan DuBois, mother of two children with albinism, this informative and inspiring book is illustrated with color photos contributed by Positive Exposure�s Rick Guidotti and eight others.
Topics include:
-What is albinism?
-How will albinism impact my child�s development?
-How do I stimulate my child�s vision?
-The social impact of albinism.
-Sun safety
-Early intervention and IEP programs
-And MUCH more!
Here is a link to purchase the book from the NOAH website: NOAH Store

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

How Lyra Sees- Link Updated

I have updated the link in the sidebar, “How Lyra Sees” with the new longer version of the presentation.
Dr. Brian Evan’s updated presentation includes more than double the number of slides as the previous one.  This has always been very helpful to share with friends and family members to explain to them how albinism affects Lyra’s vision.


How We See