When Lyra was born, her diagnosis of albinism was a shock to all of us. The weeks and months following were a time of confusion and worry about what it all meant.  Neither my husband nor I had ever seen someone with albinism in person.  One thing that we really wanted to be able to do was to meet and connect with an adult with albinism. The very first person with albinism we met after Lyra was born was a local woman named Heather Kirkwood.  The first time we met Heather was at our NOAH Bowl-a-Thon in 2007.  Since then, she has joined us atRead More →

Last year I discovered that at Lyra’s elementary school, they utilize A LOT of parent volunteers in regular classrooms and throughout the school building.  Knowing that most of these volunteers would know little or nothing about albinism, I decided to create a document with some of the need to know information about Lyra.  I thought it would also be useful for Lyra’s teacher to have available for substitute teachers. My biggest problem has been deciding which information is “need to know” and which isn’t. This document started out as 3 pages!!!  🙁  I now have it cut down to about 1 ¼ pages, but if IRead More →

We are still working on finishing up Lyra’s IEP for this year.  Hopefully we will have the final version completed by the end of next week.  The following is what I wrote to be included in the “Parent Concerns” and “Plans for the Future” sections of her IEP. ________________________________________________ Lyra is a sweet, caring, and expressive little girl. She is relentlessly curious and never seems to stop asking questions. She is fiercely independent, stubborn, and intelligent. At times, her brain/mind seems to move too quickly for her mouth or body to keep up. Lyra has advanced language development, is very articulate and is good atRead More →

These are some great resources that learned about through the college courses I have recently been taking.  Even though not all of the sites are specifically related to visual impairments, all of them are full of useful information that I think may be helpful…or at least interesting enough to check out. 🙂 All About Vision –How To Read Your Eyeglass Prescription– Browse this website for other eye/vision related articles. Project Ideal – Informing and Designing Education for All Learners Professional Development and Research Institute on Blindness – Links in left sidebar on O&M and Braille TelAbility Handouts and Video-conference Presentations – Handouts are sorted by category inRead More →

I want to preface this post with a little bit of information about me and why I haven’t been writing as much lately.   A little over a year ago I started graduate school, pursuing a Masters of Science in Special Education degree and certification as a Teacher of the Visually Impaired.  Although very time consuming, my first 2 semesters went really well.  Then this past spring, during my 3rd semester, I became very sick and ended up having 2 surgeries and spending nearly 8 weeks in the hospital.   I will be having surgery again this fall, but I hope to be able toRead More →

This past fall, Lyra completed her second soccer season.  While she enjoyed the excitement and her success in moments like in the pictures above,  overall, it was not a great soccer season.  It was more discouraging and depressing.  And unfortunately, there were many more moments like in this next picture, than the ones above.  🙁   The soccer teams she played with this time were a lot more competitive compared to her first season.  Lyra played on the team for kids ages 6 and under, but because of when her birthday is, she was one of the youngest ones on her team.  Plus, she isRead More →

I am still in denial that she is actually going to be starting kindergarten this fall.  She’s too LITTLE for kindergarten! 🙁 I tell her I don’t want her to grow up, but then she tells me, “it’s okay mommy, I’ll still be your baby.” 🙁Read More →

The information below is from Lyra’s 3rd quarter progress reports from the private preschool she attends. The first section is from her braille instructor and the other is from her regular classroom teacher.  I am quite pleased with their reports.  😀 Lyra uses a braillewriter adapted with unifix cubes on the keys. She inserts paper with help and rolls paper in independently. She produces entire lines of full cells and 2 letters (a, I) with strong pressure. She allows assistance to position her fingers to produce her first name. She has asked about upper case letters and has used the capital sign in front ofRead More →