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 →

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.Read More →

  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 movingRead More →

  On Saturday March 31st, my husband Troy and I participated in a training session through the Children’s Center for the Visually Impaired called O&M(orientation and mobility) Patrol. The goals were to get an idea of what its like to live with low vision and to gain a better understanding of various ways to improve orientation and mobility for our daughter. There were a total of 48 parents and grandparents of children with visual impairments. First, we listened to/watched a presentation covering the basics of orientation and mobility. Orientation is knowing where you are in space and where you want to go and mobility isRead More →