I can't believe October is really here and today is Sadie's 3 1/2 year birthday. Let's see, what has happened since April? Sadie continues to be a loving child with the occasional tantrum. As expected for any child with or without disabilities. Sometimes I think Shelbi is a bigger handful. They continue to grow and bond with each other. Loving and pushing each other all at the same time. Sadie is amazing us with her desire to learn and grow. She is a better eater and finally in the 25% for weight! Yeahhhhh!!!
As for school, this year has been more demanding on us and the teachers. In theory, her school is welcoming and excited to teach children with disabilities, but the truth is they are ill-equipped with the necessary special education experience. We have even found ourselves in the company of a person who discriminates and refused to be in her class. We are compromising, as we know, we do live in a free country and each person has a right to their own beliefs. The public school system is sending an itenerant special education teacher and speech itenerant to work with Sadie two times a week. This is the community preschool inclusion model.
I was driving Sadie to school last week and saw a bumper sticker...Well behaved women rarely make history. It must have been calling my name because I was torn by the feeling to fight or be grateful that at least one school would take her. I'm trying to find a balance so that I don't cram Sadie's issues down people throats. Bill and I want people to be interested in Sadie. BUT everyone has their own story and not the time to worry about another family. We do understand this; although, it is hard to take sometimes.
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
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...