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 →

Most everyone knows how I feel about the word “albino”. It’s no secret that I avoid it like the plague. And I’ve never been one to keep my opinions to myself, see Here and Here.  The word albino evokes so many different and very strong emotions in me that I don’t think I will ever be completely okay with hearing it or using it. But… *sigh* A few months ago I began doing some serious thinking and self-analyzing over my issues with the word albino.  What prompted this time of deep thought/reflection was the sudden realization that Lyra would be starting Kindergarten in the fall, interacting with lotsRead More →

FINALLY!  Here is Lyra’s IEP for next year.  It’s definitely not perfect, but it’s okay…for now.  We’ll see how things go once school starts.  I’ve been feeling like a total slacker as a parent lately.  I still haven’t scheduled Lyra’s Low Vision evaluation and the first day of school is only a month away.  Until this is completed, Lyra doesn’t have any goals or services related to assistive technology/low vision devices, written into her IEP. The “accommodations for physical education” are crap!  I don’t know how that slipped by me.  Some of her goals are too broad, especially the first one. Then there is the subjectRead 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 →

Lyra began showing an interest in playing soccer while watching her big brother’s many soccer practices and games over the past two years.  Any time the soccer ball would go out of bounds near her, she would yell “I’ll Get It!” and immediately run to try and kick the ball back.  Fortunately a big white ball on green grass is pretty easy for her to see so she does usually manage to kick it…somewhere.  She’s “played soccer” at home with her dad and brother many times, but never on a team with other kids, or with rules. We finally decided to sign her up thisRead More →

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 →