Sunday, June 27, 2010
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!
Friday, June 11, 2010
Inside, the contractors are dry walling. Not my favorite part of the construction as it means the huge mess has moved inside my house. But the dry walling means we have been able to do some of the other exciting parts, such as choosing our paint colors, flooring, and light fixtures. We are definitely getting closer to the finish line!
April 13 - Our house before construction began.
April 13 - The excavator begins digging.
April 28 - Framing begins.
May 11 - Working on the roof and siding.
May 28 - Master bedroom.
May 28 - Master bath.
Monday, June 07, 2010
I don't know if it's a blessing or just cruel that I forgot how much worse 3-year olds can be than 2-years old! Clare's development has not been typical in so many ways, so it's been four years since we've had a typical 3-year old in our house. And Simon is giving us a run for our money!
Simon is a talker. And a charming talker at that. He can melt your heart with his sweet little face, big brown eyes, and words of love. His catch phrases right now are "I have a joke" and "I have a plan." They are then followed by some sort of imaginative nonsense that only a 3-year old can invent. The kind of nonsense that always elicits a dutiful smile or laugh from a doting parent, even though you have no idea what they're talking about. However, the talking is also non-stop, and Simon chatters right through everything. Not only events and activities (Mass, plays, school events, the grocery store, an hour's car ride) but any form of discipline, instructions, or other conversations in general.
Simon has also become the Master of Button Pushing. In two ways. The first is the obvious way in that he wants to be in control of every button there is in his environment. All the light switches, the TV power, the switch for the garbage disposal, elevator buttons, handicap door-opening switches, the dishwasher. If there is a button, Simon demands that it is his right to push it. Which leads to the second way in that he knows how to push the buttons of his older brother and sister. Many times these two button pushings collide, and he will race Jamie to be the first one to push the elevator button at the doctor's office (I have yet to discover the allure of this coveted prize - the pusher of the elevator buttons - but since we are at the doctor's frequently, it is a weekly battle.) Simon knows just how to make Jamie and Clare angry or upset. He may be the smallest of the three, but he can hold his own when it comes to the mental games of sibling rivalry.
Having a 3-year old in the house is challenging and, quite frankly, mentally exhausting at times. Simon very rarely naps anymore, yet there are days when he needs to. But if he does nap, then he is awake until 8-9pm, and I can't have that! (We have always had a fairly strict 6:30-7pm bedtime. I know many people think that's so early, but it works great for our family and my sanity.) Yet, in so many ways, Simon is the sweetest of my children right now. He is still very snuggly with me (Clare is, too, but Jamie is starting to outgrow that), and still often climbs into my lap. He loves to be read to and would read books all day long. He cannot get enough of books, and I love that about him! Simon has also taken quite an interest in doing what he calls "schoolwork" - coloring or preschool workbooks. He is very smart when it comes to numbers, colors, shapes, letters, and just loves doing activities involving those things. He is ready for preschool in the fall, and although he can still be clingy and a little shy at times, I know he will love it!
It is fascinating to watch Simon's imagination develop. He reminds me so much of Jamie at that age. He loves to play with his dinosaurs, Jamie's superheroes, and Clare's princesses. He will play quietly by himself in the playroom downstairs for an hour (and actually playing with toys, not getting into stuff in the storage room or Shawn's office, like Clare would be!). In many ways, I can trust Simon more than I can trust Clare. We may have our challenging moments, but, at the end of the day, when he puts his still-chubby little arms around me and gives me a big squeeze and tells me I'm a "silly head," it's all worth it!
2. Men swarming my house doing various projects causing all kinds of messes.
3. Using whatever energy the heat has not zapped to clean up the above messes at the end of each day or I go nuts.
4. Three soccer activities per week.
5. Getting Jamie's migraines under control.
6. Scheduling dental appointments and renal ultrasounds at Children's Hospital for Clare.
7. Finishing end-of-the-school-year first grade project on Arlington National Cemetery, Tomb of the Unknown Soldier, and Memorial Day.
8. Husband away in Boulder, Colorado and Atlantic City (business not pleasure).
9. Keeping the toddler from killing herself on the playground. Violet loves the slides and stairs and ladders, but has no common sense.
10. Jamie's production of "The Emperor's New Clothes" and now Clare's ballet recital of "The Little Mermaid." Rehearsals, rehearsals, rehearsals.
11. Choosing shower, tub, tile, paint, doors, windows (exciting to be at this stage, but lots of decisions!).
12. Special Olympics Youth Athletic Program and its big Summer Games next week.
13. Throw in some fun random activities like hiking Quechee Gorge or impromptu weekend in Portsmouth.
14. A 3-year old who no longer naps, but desperately needs to. (Simon, you're ruining my quiet time!)
15. The thousand of other little daily chores to keep this house running (somewhat) smoothly.