Sunday, June 27, 2010


So much to say, so little time about our Miss Clare Bear! Clare is a proud preschool grad. I thought she would have some trepidation or anxiety about preschool ending, but either she does not fully grasp it or truly is okay with it. Her graduation day was full of songs, pictures, and treats. Her teacher cried as she handed out the diplomas which made me cry (totally ruining my punk look with my purple streaks - bad girls don't cry!). Clare has been with her teacher, Miss Karin, and assistant teacher, Miss Kelley, since she started in March 2008. They have watched her blossom from almost a baby into a big girl. They have been there with her as she learned to talk, run, climb, toilet-train, and spell her name. They should be proud at how much Clare has learned in the two-plus years in their classroom.

Clare will still do summer session at the end of July (she will miss two weeks because we will be on our big road trip to the National Williams Syndrome Association Convention!), but summer school is going to be in a different school (hopefully Clare will be in Miss Karin's classroom, though) with different classmates. In Clare's mind, she is moving on to kindergarten!

We had Clare's IEP meeting (minus Clare), in which we met the special educator for Clare's new school as well as the kindergarten teacher. The meeting went very well - we agreed with all the goals and were able to negotiate some extra PT sessions. Then we had a second non-IEP meeting at the new school (this time, with Clare) with the new staff - OT, speech, nurse, and special educator. We met the principal and assistant principal as well. We were able to go over Clare's medical and educational history as well as our concerns and goals in a more relaxed setting with Clare's new team. Again, we thought it went very well. Her new school is one of the best in the district and very small. Clare will be in a half-day morning kindergarten program. Clare and I attended her kindergarten orientation a couple weeks ago. She was thrilled to visit her new school again. We took a tour, met more teachers and staff, and played some games to get ready for kindergarten. Clare had a chance to explore the classroom, spend some time with the teacher (who I like so far), and meet some of her potential new classmates. She knew a girl from her preschool, a boy from the childcare room at the gym, and the twins that live down the street from us. We know Clare is in the morning class (we had it put into her IEP to be sure she was placed in the morning class), so we hope that at least one of the kids she knows is in her class as well.

Clare performed in her dance recital last weekend. The younger children in the ballet school danced in their production of "The Little Mermaid." Clare's petite ballet class were little fish, and they were so cute! Clare did a great job - she isn't able to perform all the moves because she has trouble with her balance, but she tried so hard, paid attention, and was not scared by the big stage, bright lights, and scores of faces! Her favorite part was being allowed to wear make-up. She talked for weeks about the make-up! Clare absolutely loves her ballet class. She is all about the music and dancing and girlishness of it. I think it is good for Clare because it helps her with her strength, endurance, and balance without being too strenuous. When Clare took swim lessons (something she also loved), the 30-minute class wiped her out for the rest of the day. Ballet is not like that, so it's a better choice of activity when it comes to Clare's endurance level. She is taking a break for the summer, but will resume ballet in the fall.

Health-wise, Clare is doing well. She had her recent endocrinology appointment, and once again, she has shot up! She has gone from not even being on the height chart to 10% a couple years ago and now she is at 19%. She is still slow on gaining weight, but has become so long and lanky. (Or lean and mean!) We recently went down to Children's Hospital for a renal ultrasound (no results yet - they are checking for any stenosis in her renal arteries as well as any issues with her kidneys because of her continued high blood pressure) and will go back to Children's in a few weeks for some dental work. Clare only needs a couple cavities filled, but because of her complicated cardiac history and increased anesthesia risks associated with Williams syndrome, the pediatric dentist wants her dental work done under sedation at Children's (they always want that cardiac OR back-up, just in case).
We are finally attending our first national Williams syndrome convention this summer in St. Louis and are so excited to go. Over the past five years, we have met many local families and been at gatherings with multiple children with Williams syndrome. I cannot imagine how it is going to feel to be surrounded by hundreds of people all raising children with Williams syndrome. We will also finally have a chance to meet friends in person that we have only chatted with online or on the phone for years. We are going to make a vacation out of it and visit both of my sisters, my grandparents, my grandfather, and aunts, uncles, and cousins along the way and in St. Louis. It is going to be one fun trip!

1 comment:

Drea said...

Thank you for your blog. We are trying to get the genetic test done to determine if my youngest has WS. Unfortunately, the closest specialist is 9hrs away. ;(