Thursday, September 17, 2009

New School Year

Kennedy's first day of middle school, September 8, 2009Well 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.


Hua said...

Hello Lisa,

I'm glad to hear Kennedy is doing great in new school! How wonderful that you are raising awareness of Charge Syndrome by giving presentation! I am always very impressed by you and Kennedy.

I really enjoyed reading your blog and learning more about Charge Syndrome. With your positive outlook on life, I feel that your blog would be a great addition to Wellsphere's HealthBlogger Network (HBN). The HBN has over 2,600 bloggers that share a common goal to share their knowledge with others, which enables Wellsphere to provide information that is personal and relevant to over 6 million visitors a month.

Feel free to visit our Health Blogger Network at, where you can apply to join. Or just email me at hua [at] wellsphere [dot] com.

Have a great day!
Director of Blogger Networks

hannah m said...

I am so, so glad to know Kennedy's middle school experience is off to such a brilliant start - with support, a desire to understand and interest from the staff. That's impressive.

And more than that, I am so excited that Kennedy is loving those things about middle school that I remember thinking were so cool, too: changing rooms (does she have a locker?), cafeterias, dances...she's incredible.

Leslie, Arlin and Katie Kauffman said...

Glad Kennedy's first year in middle school is off to such a good start! I've done a CHARGE 101 presentation to Katie's educational team every year since she started school, with general information as well as specifics as to how everything affects Katie, and the response has been amazing. When people truly want to learn and understand, the outcome can be so good!

Kennedy, I hope your year is great! And congratulations on doing so well on your first spelling test! (I always LOVED spelling!)

The Claytons said...

So cool! Sounds like she is going to have a wonderful school year!

Lynda said...

Kennedy my name is Lynda I am a nurse in the south Florida area. I am currently taking care of a 3mo old baby who has been diagnosed with CHARGE I am reashearching the web to better take care of gabriel. Your presentation was WONDERFULL!! I really enjoyed it and will share it with gabriel's mom.Good luck in middle school and all that you do. You are a fine young lady....thanks for this web site it really helped whith love Nurse Lynda

Anonymous said...

Hi Kennedy I am Nurse Lynda from south Florida...I am currently taking care of a 3mo old baby (Gabriel) who was diagnosed with CHARGE..I am doing research on the web to better take care of him. I found your site and video.You did a GREAT!! Job..I will share it with Gabriels's mother. You are a fine young lady. I wish you all the best in whatever you decide to do in life.....Your off to a great start. Love to you Nurse Lynda from south Florida if you have any suggestions for me you can e-mail me at