Sometimes I wonder if I should post real scenarios with the really people in our life. I would hate it more than anything to offend anyone, but isn't that part of sharing her story??? Does anyone really read this anyway?
So here goes...Sadie had a speech evaluation on Monday, which I consider to have been a waste of time. While the therapist giving the evaluation truly meant well, I would like to think that when I tell you she used a standardized test you will understand that that means showing a notebook to Sadie with a choice of 4 pictures. She said please point to..., but when I told her that Sadie won't do that or understand that she said well I'll ask her to circle it instead. When she asked Sadie to circle/pat the skunk. Sadie didn't respond to pointing/patting/or kissing the pictures. She simply wanted to hold the therapist's pen. I asked her what level she started on...she responded 4 year old....AFTER, I had already told her that Sadie's receptive language is 18-20 months and expressive language is 6-9 months old. AMAZING. Needless to say, She went to the beginning of the test and got NO results. I continued to explain that we want to focus on basic communication/sign language/picture choices with photographs/concrete objects.
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
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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...