On more than one occasion I have heard other parents of children with albinism ask the following question: At what age should we tell our child he/she has albinism? This question really boggles my mind. It’s a legitimate question, just not one that we ever had to ask. Lyra knows she has albinism, but there was never a specific point in time when we sit her down and had the talk.  My opinion on this is that there should never be a time or age where you have to TELL your child that he/she has albinism because it should just always be known.  I really don’tRead More →

Not much of anything new and exciting happening lately.  Lyra’s doing great in preschool!  There haven’t been any changes in her vision.  Lyra’s just been busy being Lyra.  🙂 Make an on-line slideshow at www.OneTrueMedia.comRead More →

This past week Lyra got 10 1/2 inches of her hair cut off.  Her hair had grown SOOO long, to the point of being unmanageable, and she desperately needed a haircut. We figured if there was ever a time her hair would be long enough to donate, this was it. It’s not something we really think about much, but people with albinism are not immune to cancer or other illnesses that could cause hair loss.  I think that if for any reason, a person with albinism needed a wig, that they would be incredibly grateful to have one that was their natural hair color. WeRead More →

Below is the long version of an article I wrote that was published in the latest issue of Albinism Insight.  🙂 This is not a comprehensive list.  I’m not a teacher, although i do have a teaching degree.  The advice I give is based on my experience as a parent, having 2 children(ages 4 and 14) who have IEP’s and the dozens of IEP meetings I have prepared for and attended.   Over the years I’ve made plenty of mistakes, but through them learned a lot. I now go into IEP meetings with much more confidence and competence and with far less fear than I didRead More →

We finally completed Lyra’s IEP for the 2010-2011 school year.  Probably the biggest difference between this year’s IEP and last year’s is in the number of goals.  Last year we had only 2 goals and this year there are 5. Communication and teamwork among Lyra’s IEP team members, including myself has improved significantly compared to last year.  There’s a lot less arguing and frustration during IEP meetings.  This is a big deal to me as I am already looking towards next year, when Lyra will be in a new building with a brand new IEP team.  Knowing that her current IEP team members are allRead More →

This is the first of several posts that are LONG overdue!  There is so much I have to talk about that I hardly know where to begin.  Plans for next year are looking really good, but before I start talking about her new IEP, let me just summarize this past year… Lyra had a very successful first year of preschool.  She is progressing very well with learning both print and braille.  She has not shown a bit of resistance to the braille learning and has not developed any bad braille reading habits.  She is progressing VERY quickly with her print skills.  She can identify allRead More →

With everything I am about to say, it is my intention to represent only the opinions of me and my family.  While I do refer to other parents, my statements do not reflect the views of all parents of children with albinism or individuals with albinism.  People who know me and my family through NOAH or AI, probably already know my opinions on this subject, so for some of you… I am preaching to the choir.  As for the rest of you, my friends and my family, I mean this in the kindest most loving way possible… Please do NOT refer to my daughter LyraRead More →