Parent of a Child with Albinism

Dare to be Rare

admin — Wed, 12 Sep 2012 19:23:59 +0000

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 [...]

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Substitutes and Volunteers

admin — Sun, 09 Sep 2012 03:43:14 +0000

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 [...]

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1st Grade IEP- Parent Concerns

admin — Sat, 25 Aug 2012 23:13:59 +0000

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 [...]

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New Resources

admin — Wed, 25 Jul 2012 05:29:55 +0000

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 [...]

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Vision Update – 6 years old

admin — Sun, 22 Jul 2012 09:12:08 +0000

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 [...]

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Reading for Real!

admin — Sat, 16 Jun 2012 16:09:46 +0000

A LOT has happened and there is a lot I need to write about, but for now…this will have to do. Make a video – it’s fun, easy and free! www.onetruemedia.com

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Second Soccer Season

admin — Tue, 31 Jan 2012 18:41:10 +0000

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. :( [...]

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Seasons Change

admin — Fri, 06 Jan 2012 23:08:26 +0000

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Albino Revisited

admin — Tue, 16 Aug 2011 04:27:13 +0000

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 [...]

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Kindergarten IEP

admin — Fri, 15 Jul 2011 03:16:30 +0000

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 [...]

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