Things are going well...

Just a shout out to you blog-readers to give you a quick update on life. The reason I haven't been keeping up (even worse than usual) is that I began a new full-time job in December as an itinerant teacher for students who are deaf or hard of hearing. It's busy, challenging, time-consuming and I absolutely love it. This is what I'd wanted to do all along so it's a thrill to finally be doing it!

Kennedy continues to thrive at middle school - she is joining everything! She made the cheerleading team, is on the "Celebrate" team at her school (they plan various events, etc around the school), she continues to do sign language club with her interpreter once a week, is in the school choir, which just began in January, is taking a four-week babysitting course through the Red Cross, and is back to theatre classes at Interaction Children's Theatre Company after the holiday break. She also just mentioned the other day she put her hand up when they asked who was interested in going skiing at the school (yikes!). She also got funding for a new "netbook" computer, which will be a great help to her at school for taking notes, working on projects, reports, etc. It travels to and from school so she can continue on work she started at school in the evenings, etc. It is very cute, bright blue and already adorned with a "Justin Bieber" desktop. That would also be another BIG interest in her life right now - as she says, she's got "the Bieber fever"...

So, you see my friends, even if I were NOT working my butt off at my new job, I'd still have little time for updating the blog (or anything else) because my daughter has a much fuller, exciting life than her father and I do and we are the designated chauffeurs for our busy gal.


We also find time in amongst Kennedy's busy social calendar to get up to Moncton to see our sweet granddaughter Taylor (we actually made it there earlier today!), who is growing up so fast it's scary!

Hope life is treating you all well!

Kennedy Directing Her School Sign Language Club Signing Rudolph

Today was the holiday show at Kennedy's school. Each Monday, she and her interpreter run a noon hour sign language club. They had been practicing the song, "Rudolph the Red-Nosed Reindeer" and performed it today. It's a great video but since Kennedy is directing, we mostly just see the back of her! They did a fabulous show and I'm so proud of all of them. Way to go!

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.

Kennedy Presenting CHARGE Syndrome from rykykk on Vimeo.

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.

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