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
Wednesday, April 28, 2010
Tuesday, April 27, 2010
School
figured I might post this, especially after writting it down...this
was her path from private inclusion to now public "reverse
mainstreaming" (inclusion)
Well, Sadie had a wonderful experience at All Saints in the 2s class
and the director Dee was very open to having inclusion. However
wanting inclusion and having teachers willing to teach it, well that's
a whole different set of issues.
Sadie was in the 2s from Jan to May 2008. When she started in Sept
2008 in the next group up, one of the teachers actually refused to
teach in the same room as Sadie. She very bluntly stated that children
like Sadie belong in a special ed self contained classroom. We were
shocked and beyond belief that the director stood for that behavior,
especially when she told us she wanted Sadie at her school. The
director moved the teacher to another classroom and we continued
there. Sadly, the other teachers let Sadie play alone while they
engaged the other students. They even went as far to tell us that we
should only bring Sadie to school in the morning after she had a BM.
As if we really had control over that!
Ultimately, we moved her out of All-Saints at the end of November '08
and she started self contained at JBDey. Jan-June '09. We felt like
they were good enough, but still not the environment we wanted. That
drove me to look in to other preschool inclusion options. Donna Robel,
along with Susie OConnell met with the VB special ed dept. And
ultimately they were working on a pilot "reverse mainstreaming class"
modeled after Chesapeake.
Now, Sadie is at Birdneck, with the most amazing teachers in an
inclusion class, 6 sp ed and 6 typical.
My advice is to push for another year of preschool. How old is your
child, birthday? As long as they are 5, they should be able to go to
preschool. You might do some research and see if you can call an IEP
meeting (in writing). See what the team recommends, try to stand your
ground, find all your options!
Maybe someone who knows the answer about the age allowed in preschool
can respond!
--
Sent from my mobile device
Lisa
Sadie's Blog: http://sadie8p23point3.blogspot.com/
Shelbi's Blog: http://babybeachgirl.blogspot.com/
Sadie's school
Sent from my mobile device
Lisa
Sadie's Blog: http://sadie8p23point3.blogspot.com/
Shelbi's Blog: http://babybeachgirl.blogspot.com/
Sunday, April 25, 2010
R-word
Sent from my Verizon Wireless BlackBerry
Thursday, April 22, 2010
Back Yard
We came home from the splint clinic at 330, Sadie was fitted for Polly Wogs, (aka shoe inserts) also made by Cascade the same company that makes AFOs. Pretty neat concept, and I don't have to buy anymore cheap ones from the pharmacy! Plus insurance pays for it and that's aways a bonus!
I love sunny afternoons when it's in the low 70s.
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Tuesday, April 20, 2010
Dinner
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Time is a Thief
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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...