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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

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Ichthyosis and School: Air Horn Reveille

School started yesterday. School, for us, starts at 7:40 in the morning. This creates a bit of a problem for our family, since we need to get all three boys bathed and out the door before daylight.

The summer sunshine makes things worse. Up until last week, it was still somewhat light after 9pm. All [...]

Ichthyosis and School: Hawaii

When Cookie started kindergarten,* we ran into a problem that may families with ichthyosis have experienced — some of his classmates started picking on him because of his skin. Two kids from his class thought it would be funny to start sniffing Cookie’s neck as they walked down the hall, and then whisper to other [...]

Back to School 2013

It’s that time again – school is coming! Our kids don’t start until September, but many districts start in mid to late August.

I got all our supply shopping done earlier this month and spent an afternoon helping the kids sharpen 120 pencils and take all the packaging and stickers and tags off of their [...]

Life with Harlequin Ichthyosis: High School

Hunter is back with us today, sharing her experiences in high school.

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After my middle school experience, I went into high school very guarded and careful. I always kept a barrier up against new people because I was afraid of having them bully me. Ninth grade year was by far the hardest of all [...]

Life With Harlequin Ichthyosis: School Daze

Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe

After three years of Early Intervention [...]

One Fall Derails the Train

Last week, we were up at the usual time, getting ready for school. The usual routine involves sending Kitty and Monkey out to the bus stop (about 10 houses down the street), then getting Cookie and Momo into the car. We leave as soon as the bus collects the other two at 7:10, as it’s [...]

504 strikes again

When Monkey started school, he had already been enrolled for 2 years with an Individualized Education Plan (IEP) for a speech delay. When he started kindergarten, we basically copied Cookie’s 504 plan word for word and slapped Monkey’s name on top and called it a day.

This year, we got a new guidance counselor. Upon [...]

Ichthyosis and School: Cookie’s First Day of Kindergarten

At our old house, the elementary school was a few blocks away from our house. School started at a nice, reasonable 9am, so I had plenty of time to get Cookie out the door. The “meet the classmates at the park” event a few days before had flopped when Cookie overheated, but I wasn’t worried [...]

Ichthyosis and School: Initiating a 504 Plan

Near the end of preschool, we contacted the school district about creating a 504 plan* for Cookie. Some districts have a specific district coordinator that handles special needs evaluation, while in other districts, the job falls to the school counselor. The process takes about 3 months to complete. Here’s what we asked for and went [...]

Ichthyosis and School: Quirky School Supplies

School started last week, and that meant a big load of new school supplies.

Every year brings a new challenge. Our oldest, Cookie, will be writing a lot more now that he is in 4th grade. He also has a 3-ring binder and graph paper on his list. Art projects are getting more complex, too.

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