EMNS Middle School Sign Language Club Holiday Concert Performance

Kennedy with her Sign Language Club, performing "Mary's Boy Child"...you'll notice she's the one to give a big bow, wave to the crowd and make a 'heart hand' to them. No shyness here...;)

For those of you not on facebook, here is the link to the youtube video:
http://youtu.be/6xlp2NO52R0

Enjoy!

Winter Carnival 2011

To update my last post, Kennedy's appointment was canceled at cardiology because of her bad cold/fever. We will see them again in June hopefully. I will be sure to update everyone after that appointment is over.

Last week was Kennedy's Winter Carnival at her school and on Friday, which was also 80s Day, there was a Gong Show in the afternoon. Kennedy choreographed and practiced her heart out on this dance number - she didn't get a single gong! She brought down the house. Now to continue practicing for cheer competitions, her spring theater performance and of course, CHARGE Conference Idol 2011!

Bad Blogger

Hey gang,
I guess with all the updating, etc. that happens so quickly on Facebook, I've been neglectful here on the blog. Kennedy is doing GREAT and so busy (thus the lack of time for bloggage). I guess that is a good thing, right?

She is going to be in the provincial competitions tomorrow for middle school cheerleading and is very excited about it. It's been her first year for cheer and she has really enjoyed it. There have been many practices and four big competitions. It's been really great for her and I must say, I have enjoyed going to watch the competitions. I have to say I am REALLY glad she isn't one of the "flyers" that goes up in the air, that would make me nauseous if I had to watch one of my kids up in the air like that.

In addition, she's getting ready for her big InterAction Children's Theatre show next week, called, "Saint John History Mystery" - which is timely seeing that our city is going to be celebrating its 225th birthday the week after with lots of events going on. She will also be participating in a huge group dance/singing at Harbour Station on May 18th as part of the Saint John 225 celebrations. Needless to say, the month of May belongs to Kennedy and her schedule. I couldn't be happier. Or more tired. :)

Here's a shot of Ms. K, along with the rest of her team, the Millidgeville North Stars! (she is fourth from left and the girl just before her is the same age as Kennedy - talk about height disparity!!) You can click on the picture to enlarge it.

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.

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)

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.

Schoolyard Accident - Take Two

Well, it's spring so time for another installment of phone-call-from-school-because-Kennedy's-hurt-on-the-playground. Except, this time, it's much worse than last year's broken arm incident.

This past Wednesday morning about 11am, I had just picked my father up after his surgery at the hospital to take him home. We were on the way to his house when my cell rang - it was the school. Kennedy had an accident outside and her hearing aid got knocked off; they were still trying to locate it. I thought to myself, "Well they better find it, the darn thing costs thousands of dollars." They said she was fine but asked if I could come over. I asked Dad if he was up to it and he was, so we turned around and headed back to K's school.

When I got there, they reported they had found her aid, which had landed inside her coat. I was relieved for an instant, until I pulled up her hair that covered the area where her implant goes. The titanium screw that is affixed to her skull to hold her hearing aid implant on was driven back out of its normal place and dislodged halfway from her skull. It was a bloody mess. I had to sit down, not from the blood, but from the immediate sinking sensation that I knew she was going to have to have surgery to fix this. I'm just so glad she was in good spirits (thank goodness for high pain thresholds). She asked if she could put her BAHA back on and I signed/said, "No, we need to call the doctor first to see if it's okay." Then, the floodgates opened, "I DON'T WANT ANOTHER SURGERY MAMA!" she gasped in between sobs. My heart was breaking for her. I don't blame her a bit; after 19 surgeries, she deserves the right to be upset at the prospect of another.

We did eventually get her calmed down, got home, cleaned the area well and called the surgeon in Toronto who'd implanted her BAHA back in '06. He called back and said to keep it covered and the earliest we could get in was May 4th for the O.R. We also have to put her on an antibiotic for ten days because of the risk of infection and keep it covered, especially at school. We dug out her old softband (headband that the BAHA can snap onto, usually worn prior to BAHA implant surgery). Her BAHA started 'buzzing', however, so we had to send it away and wait for a loaner to arrive. So no hearing at all for the weekend until the loaner arrives on Monday.

Now, Graeme and I are planning on an unexpected trip to Toronto on May 3-6 now for surgery to have it fixed and the area on her head closed. For those of you who don't know the geography - Toronto is 18 hours away from us, so we need to fly, etc. It's very stressful figuring all of this out, with it being an unexpected trip to Toronto and worrying about infection between now and then, etc. I know I am biased but I would not think it was good judgment to have three other kids spinning her on a swing (doing a 'twisty') with about 200 kids running around. Someone's foot came up and hit her in the head (obviously pretty hard to dislodge a titanium screw/abutment from its place that's been there for 3 years). I know accidents can happen but I think sometimes Kennedy is overestimated in terms of safety and she shouldn't be; between last year's broken arm and now this much more serious injury, I think it's time to go in for a little chat about safety, etc with the school. Just one more thing to do.

Anyway, we are plugging along and Kennedy is doing very well, she is much less worried than we are...

Kennedy Xmas Concert '08

Just a couple of shots of K in her Xmas show - her class sang "Jingle Bells" (all four verses - did you know there were four???) and played recorder on the chorus. We were so proud of her and how well she did with the recorder. I was excited to help her learn as I'd played the saxophone for many years and the recorder is very similar so I hauled out my old recorder and worked with her; we had many "Jingle Bells" duets here at the house before the show! Unfortunately I had only my Digital SLR camera with me without video capabilities so I didn't get any video. Maybe Santa will bring me a digital video camera! ha ha...:)

Singing Shot:



Recorder shot with her class:



Recorder shot close up:

Happy Halloween!

Kennedy has a message for everyone today about what happened at school:


HAPPY HALLOWEEN from the 'Elegant Witch'

September School Work

Kennedy had to write a story about her summer vacation. I thought some of you might get a kick out of it:

My Summer Vacation

I had a great summer! I went to Theatre Camp, Deaf Camp, and I got a haircut.

I went to Theatre Camp to do singing, dancing, and acting. We are doing the play called Peter Pan. I am an actress now. It is at the Interaction Children's Theatre.

I went to Deaf Camp on August 3rd. It is in Fredericton. We played games, swimming, and crafts. I had fun at Deaf Camp!

I got a haircut at Wal-Mart. My hair got straightened. I got blonde hair. Marysa and Jenna came with me. I also got bangs. I love my haircut!

I had a wonderful summer! My best part was going to Theatre Camp, Deaf Camp, and my haircut. I hope I will be a good student in Grade five.

She also had to write sentences with conjunctions. For some reason, when she is told to write sentences, she independently does these long, rich, detailed sentences. When she is writing a story (as above), she uses more short, choppy sentences. That's something we need to work on but she'll get there. I had to have a good laugh at number 1. You can click the picture to make it bigger if you can't read it.

Blog Neglect - Brief Update

Hey gang, I know I've been woefully negligent in posting here but with Kennedy & Kyle back to school plus me doing my full-time internship and two university courses, there isn't much time for blogging. On a good note, grade five is going pretty well for Kennedy so far. Her writing has improved so much, she is adding so much more detail to her sentences, using conjunctions, etc. Mommy is very proud.

She has decided that she doesn't want to go back to Guides this year. I'm a little disappointed but I respect the fact she doesn't want to and I won't force her. She's still bowling in the league every Sunday and going to theatre classes beginning in October on Thursday nights. She goes around telling everyone, "I'm an actress now." It's so cute.

Hope all of Kennedy's readers are having a great September/back-to-school time!!!
Here is the little Missy on the first day of school - what a diva with her Hannah Montana hair and outfit on, blowing her kiss to Mommy!

Test-time

Lately, K seems to have had quite a few tests and another big one coming up Thursday on the Interior Plains region of Canada. She has to know information about the climate, natural resources, plants, animals and the geography of the region. She recently had one on the Canadian Shield and she got 27/30. We were so proud. She also got 47/50 on a big spelling test and 12/15 on her grammar test for quotation marks. She is working so hard lately and I just wanted to share all the great news about how well she was doing!

Now, it's test time for mama - 3 exams next week...It's almost over, it's almost over, it's almost over...


This is Ms. KK and Ms. MacKenzie together shopping for 'fabulous' clothes at Old Navy on a recent trip. A girl's gotta have a break once in a while from all this school work, what's more fun than shopping???

Fighting for Choice

We have a war going on right now in our education system here in NB, if you want to read all the details about it, check this blog out.

Here is a condensed version: the NB government is trying to save money by cutting the Early French Immersion program here and forcing ALL students in grade five into this new, "Intensive French" program. Kennedy goes into grade five in the fall and now I have lost the choice for her to continue to be educated in English. There are no French interpreters or itinerant teachers for students who are deaf/hard of hearing, etc...this is a nightmare. The intensive French has them in French instruction 75% of the day for FIVE months!

This is inappropriate for Kennedy and even MORE so because she will not even have access to the information even if it WERE appropriate. I've had many others come to me and tell me they feel the same way and nobody in the government, at the school district, or at the school can tell me
a) how this could possibly benefit her
or
b) how they plan on accommodating for her unique learning challenges.

They are opening themselves up for quite a bit of legal trouble in my opinion (in addition to the fact that so many people are outraged by this decision that they will be lucky to see the light of day in the next election).

I wish things could be boring - just for a little while.

So, if you're wondering where I've been lately, I've been fighting the government over this regressive decision that will adversely affect Kennedy and others as well. A government removing choice from its citizens in a democratic system - kinda sounds a little backward to me...

December Pictures

Kennedy sang in the Holiday Musical at her school today. It was called "Once on a Housetop" - a great multi-cultural, multi-traditional celebration. Her song was part of the "Santa" portion of the show; he was stuck in the chimney. The song was "A Big Red Fella" - the video is getting transferred onto DVD so I can get it up online. In the meantime, here she is singing:


And here she is, post-show, posing in front of the tree:




And the other day, shoveling snow with Dad (we are doing that a LOT lately - lots of snow already!):

More of Kennedy's School Work

School is going well, Kennedy appears to be doing really well so far in grade four. She knows what she is doing with her homework, I'm not feeling like I'm re-teaching anything this year. It is a practice time for concepts she has already learned at school. She has also gotten a couple of great marks so far: 12/13 on a Social Studies Test about the Canadian provinces and territories and 8/10 on this paragraph about food. I had a good laugh on this one because she isn't allowed to eat downstairs (and she always asks) and she listed it as her favourite place to eat!!!

My favorite breakfast is cereal. My favorite lunch is pudding. Cake is my favorite dinner. My favorite place to eat is downstairs. I know how to cook supper. I want to learn to cook some eggs too. My mom and dad can cook supper.

Yep, cake & pudding for two of her favourite meals - that's my girl!

Tomorrow Is The Big Day

Grade four begins for Kennedy tomorrow; we have learned that Kennedy will be having the teacher she had in Kindergarten, who we loved very much and who "got it". We are looking forward to a very positive grade four! Fingers crossed.

Unfortunately I start on Thursday and I say unfortunately because I've had an accident yesterday where I almost lost the end of my pinky finger on my right hand (of course). So, typing and other work with my right hand is limited and slow - hopefully I can keep up with the profs and with Kennedy.

Here's to a great school year for all the kiddos and especially our friends with CHARGE, may they all have teachers and administrators who "get it"...

Field Day!

Kennedy is very excited today because it is "Field Day" at her school. Ryan & Kyle used to get really excited about it back in the day as well, because that school does an amazing job and a lot of fun things with the kids. She woke up this morning saying, "Happy Field Day, Mama!" A good dose of sunscreen, a hat, and way more energy than I ever have this early in the morning and she bounded down the front stairs and was off to have a blast at Field Day. I'm still on coffee number one; after writing almost 6 hours of exams yesterday, I need more than one.

This weekend is my first weekend "off" of crazy studying for a while with 2 exams down and a week before my stats exam, so you never know what Kennedy & I will be up to; I'll post some pictures later on in the weekend. Have a great weekend, everyone!