There are times when I feel guilty about just updating about Clare. Yes, the title of the blog is Clare's Journey and the ups and downs associated with Williams syndrome is a big part of our life, but the blog is really more about our family and whatever else is on my mind, so I always feel the mom-pressure of dividing the blog attention evenly. So here goes!
Winter indoor soccer is a wrap, and now we have moved on to spring travel soccer. I love that Jamie has found a sport he truly loves and is skilled at, yet it is always an adjustment to everyone's schedule to have soccer three times a week. His first practice was last night, and, since Shawn is away this week, it was a late night getting everyone into bed, so we all paid for it today! (Extra grumpies all around.) In school, Jamie is busy doing the school play again this year. I am not sure how thrilled Jamie is that they are performing Cinderella this year (he is one of the mice), but he enjoys doing the play, and I hope he continues loving the theater like his parents do. Shawn and I talk hopefully that, in the future, we can be involved in a community theatre together. It definitely brings back memories of our college days!
Spring allergies are having an impact on Jamie and his migraines. Even though he still receives monthly allergy shots, when the allergens start to emerge full-force, Jamie still reacts to it. Last weekend, we knew allergy season had officially started because Jamie fell asleep before dinner on Saturday evening, and, on Sunday, I went into his bedroom in the mid-afternoon to find him sound asleep on his floor! So I knew his allergies were knocking him out. We added a daily dose of Zyrtec to his schedule to get him through the next couple of weeks. I hate seeing him suffer like this. I never feel like it's "fair" that an eight-year old struggles to just get out of bed some mornings. In my mind, he should bounce out of bed full of energy every day. Save the struggle for when he's old like his mom!
Clare is done with all her educational testing between the Boston WS Clinic, visit with Dr. Mervis, and her three-year evaluation in the school district. We have a meeting with her school next week to discuss the results, amend her IEP a bit, and maybe chat about next year. Clare will have her official IEP meeting in June where we will formalize the plans for next year. She continues to love kindergarten and is making progress. Recognizing letters, counting, the concept of rhyme, letter sounds, and forming letters and shape is still slow, but I don't want to inundate her with constantly making her "work" on her letters. There was a period a couple months ago when Clare did not want to go to school. She would cry when we worked on the alphabet and even referred to herself as "stupid." The psychologist in Boston picked up on her frustration in this area as well, so we have backed off at home. Dr. Mervis recommended the Handwriting Without Tears program, which we have not started yet, but I also wanted to explore options for Clare that were fun. Not just sitting at the table and drilling it into her. Which led us to hippotherapy, another suggestion from Dr. Mervis and one we have considered on and off over the past few years.
Clare started hippotherapy three weeks ago and is using it as a form of occupational therapy. Stating that Clare loves riding the horse is a huge understatement. She tells me often that she misses Nori (the horse she rides), and I have to wait until lunchtime the day of hippotherapy to let her know that we are going or it's nonstop asking when are we leaving. While riding, Clare works on skills such as dressing, hand-eye coordination, drawing and writing, some vision therapy, and general core stability and trunk strengthening. It is a workout for Clare. I don't think she could ride for longer than the 30-minute session, but she loves every second of it and is always sad to say goodbye to Nori. The OT has recommended we also take Clare to see an opthamologist who runs a vision therapy specialty practice (coincidentally the same opthamologist that Clare's early intervention OT recommended when she was about a year old). Clare does have some tracking and visual scanning issues, which the OT has really been able to see when Clare is riding (her eyes lose focus when the horse turns a corner - almost like the eye muscles cannot keep up). The OT warned that this can lead to some problems with scanning when Clare learns how to read. I feel that just as we are starting to get something under control, something else pops up! But, then again, this is also a problem we have heard about throughout the years, so perhaps we should have done something earlier about it.
Sometimes I get caught up in the frustration of the educational process and forget to take note of what Clare is doing in her everyday life. When I think about it, she really has accomplished so much over the past few months. She rides her tricycle nonstop now without any help. She is like a little speed demon on it. She does not seem to mind that other kids her age are riding bikes. She enjoys the freedom and independence of being able to get on and off the trike by herself and go. Another small victory (but also huge) is that she is independent 95% of the time in the bathroom now. This is such a success because, again, it is another assertion of her independence and self-help skills. She no longer regularly announces that she has to go - she just goes. Shawn installed a bar on the wall for her so she can get on and off the toilet by herself. The only thing I help her with is buttoning her button if she is wearing jeans! She can undress herself now. She still needs help getting dressed (it's hard to maintain balance while pulling pants on - I have trouble with it!), but can pull her socks on now and often can put her shoes on, too. When I get discouraged, I remember where Clare was six months ago and can definitely see the progress!