Friday, November 20, 2009
Kennedy Presenting Charge Syndrome To Her Classmates...
Many of you have seen this on Facebook or through the Charge yahoogroup but I know some of you follow the blog only so I'm reposting this video that Kennedy did on Charge syndrome for her classmates. Some of the terms were changed/simplified and some things didn't go too far in depth - it was more of an "intro" for her classmates to help them understand Charge. This was orignally set up for a sign language club that Kennedy & her interpreter are running at the school, to introduce why Kennedy uses sign. Another teacher of the other grade 6 requested her to do it for her class and finally her own teacher had her do it for her homeroom class.
Monday, October 26, 2009
Health Tests - October 2009
This post is to celebrate Kennedy's continuing great achievements in middle school. Her tenacity, great attitude, and willingness to try hard at school is just a testament to what an amazing person she is. There is, however, another reason why I'm writing. It is because of so-called professionals who are ignorant about CHARGE syndrome giving out bad information to families who have young babies or children with a recent diagnosis.
Twice this week, there were messages on the CHARGE listserv about bad information. The most recent was that a hearing specialist told a mother of a 13 month old girl that most people with CHARGE never talk and that they don't progress cognitively beyond the infant stage. As the parent of a child with CHARGE, I was so offended; I can only imagine what individuals with CHARGE think about comments like this. Those of you who know me can imagine my response to this: I was outraged!!! I gave the mom a lengthy response but I'm just so offended when "professionals" give out information like this to parents when, in fact, they really haven't done a modicum of research on the topic. I asked this parent to ask the hearing specialist where she got that information; I'd love to see the reaction on that.
This just really underscores the need for more public awareness about and more accurate information out there about CHARGE syndrome so no parent has to hear ridiculous prognoses like this. In that vein, I will post these 2 tests that Kennedy has taken in Health on the male reproductive system and on puberty changes between males & females. The first shows how she had to learn to accurately identify all parts of the male reproductive system; the second is deciphering which puberty changes occur in both females and males. She had to read and do these independently. I challenge most men to accurately label their own reproductive system and Kennedy worked very hard to study and did great, scoring A+ on both. Secondly, I will leave a link to our 2nd Annual Charge It for CHARGE campaign, which helps support the CHARGE Syndrome Foundation and its mandate to help families, assist research, and provide (correct) information to professionals about CHARGE. If you would consider making a donation to our family donation page, it would be greatly appreciated.
*Note: You can click on either of these photos to enlarge them.
Male Reproductive System Test (she also knows what each part does; that test is next Friday):
Puberty Changes: Male & Female (read and identify which occur in both):
Click here for our 'Charge It for CHARGE' Team Donation Page - Thank you for your consideration of this worthy cause.
Twice this week, there were messages on the CHARGE listserv about bad information. The most recent was that a hearing specialist told a mother of a 13 month old girl that most people with CHARGE never talk and that they don't progress cognitively beyond the infant stage. As the parent of a child with CHARGE, I was so offended; I can only imagine what individuals with CHARGE think about comments like this. Those of you who know me can imagine my response to this: I was outraged!!! I gave the mom a lengthy response but I'm just so offended when "professionals" give out information like this to parents when, in fact, they really haven't done a modicum of research on the topic. I asked this parent to ask the hearing specialist where she got that information; I'd love to see the reaction on that.
This just really underscores the need for more public awareness about and more accurate information out there about CHARGE syndrome so no parent has to hear ridiculous prognoses like this. In that vein, I will post these 2 tests that Kennedy has taken in Health on the male reproductive system and on puberty changes between males & females. The first shows how she had to learn to accurately identify all parts of the male reproductive system; the second is deciphering which puberty changes occur in both females and males. She had to read and do these independently. I challenge most men to accurately label their own reproductive system and Kennedy worked very hard to study and did great, scoring A+ on both. Secondly, I will leave a link to our 2nd Annual Charge It for CHARGE campaign, which helps support the CHARGE Syndrome Foundation and its mandate to help families, assist research, and provide (correct) information to professionals about CHARGE. If you would consider making a donation to our family donation page, it would be greatly appreciated.
*Note: You can click on either of these photos to enlarge them.
Male Reproductive System Test (she also knows what each part does; that test is next Friday):
Puberty Changes: Male & Female (read and identify which occur in both):
Click here for our 'Charge It for CHARGE' Team Donation Page - Thank you for your consideration of this worthy cause.
Tuesday, October 6, 2009
Friday, September 18, 2009
First Test of Middle School
Ahhh...if only everything could be spelling. (you can click the picture to enlarge it if you can't see it well)
This kid can spell like nobody's business.
Maybe it's genetic?
(Me, with very large hair, in grade 12, as part of the St. Vincent's High School winning spelling bee team...yikes)
This kid can spell like nobody's business.
Maybe it's genetic?
(Me, with very large hair, in grade 12, as part of the St. Vincent's High School winning spelling bee team...yikes)
Thursday, September 17, 2009
New School Year
Well Ms. K is settled into her new school and doing fabulous. She loves being in middle school, going to the cafeteria to buy french fries, changing rooms for classes, is excited about upcoming first dance and esp. loves her new teacher, her first "boy" teacher.Her team at school really wants to understand what's going on with K - they had me in to do a little CHARGE 101 presentation yesterday and had lots of good questions. As I told them, I'd offered to do this multiple times in the past and they were the first school to take me up on it, so that's a great start. All signs are pointing to positive so far. Of course there have been some kinks we've had to work out, but these are minor in the grander scheme of things and if these things are the biggest issues we need to deal with this year, then it's going to be a great year.
I just feel that because I was able to go in and do a proper session on CHARGE, its complexity and how that relates to Kennedy, complete with pictures and explanations, that they will 'get it' better than others who've worked with her before for a long time. When I say 'get it', it's not just in terms of her possible limitations but with the fact of how hard she does work to be where she's at and in terms of everything going on in her little body 'behind the scenes' that you don't see/think about because she does compensate so well.
I am really happy and hopeful that the open communication, questions, problem-solving, and overall quest for understanding & working together to facilitate K's success at school, continues.
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