Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife
Thursday, February 16, 2012
IEP meeting today
Today was another IEP meeting to discuss changing Sadie's label prior to her 7th birthday. In the summer of 2007, Sadie was found eligible for special education services and was labeled developmentally delayed. In our school district, children must have a label change by their 7th birthday to Intellectual Disability, Other Health Impaired, Developmental Disability, etc. All of that requires some or all of the following, updated social history, psychological evaluation (IQ), adaptive/behavior, etc. We strongly feel at this point, we are not ready to "label" her ID, because we have many concerns with the implications of her IQ being in her record. Let me ask you a question, would you want your child's teacher or other teachers to know their IQ? Do you think it would affect how they are treated or educated? Do you want anyone to know your IQ? Would you post it on facebook?
Time is a Thief
I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...
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and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
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Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past mont...
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Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find...