With summer being in full swing I have been getting more time with Claire and that has really been a good thing. I wish I had words that accurately and adequately described how much better my world is because of Claire, but I don't, not sure that they exist. Along that line, being with Claire more, I have really started to wonder about the importance of words. When Claire didn't begin to speak it seemed that an inordinate amount of emphasis was directed at language development, access to language (the Eco2) and now we are onto emergent literacy. While they are all very good things to work on and we will continue to pursue them, I think that it kept me from seeing the part of the world that is outside of language. Over the last few weeks, Claire has slowly been showing me all of the things that are bigger than spoken word and it has been beautiful to start to see things from this non-verbal perspective. We were recently at the aquarium when I realized that you can sit in front of the tank and take it in without a single word being spoken. The awe and majesty of the ocean is just bigger than what words can express and she can take it in just as much as everyone else without a single utterance. So in response to this realization and as a attempt to honor my non-verbal child who truly understands and participates in the world without being restricted by words, I will be blogging for the rest of the summer in pictures.
It had been a nice day. Pancakes with fresh strawberry sauce and bacon with the girls. Yummy coffee and then off to church. It was on our way home that we hit the snag. Some how, even having had coffee, I was exhausted so we decided to take the slightly longer scenic route home through the amazing redwood forest. There is something about looking at the light in the trees that is calming and energizing to me and the girls seem to enjoy it too. They were, until Claire lost it and started screaming and biting herself out of nowhere. My blood pressure shot up pretty fast but somehow I managed to stay calm for the 10-15 minutes of intense screaming. I suspected that it was because she had to go to the bathroom. I told Claire that if she would calm down, we would take her the second that we got home, but that if she continued to scream, she would get a time out once home before going to the bathroom. Suffice to say, we got home, she had her time out, I hid in our room with my good friends Ben and Jerry and eventually Captain Awesome talked with Claire about the time out and took her to the bathroom. As it turns out, she was dry, and she voided while sitting on the toilet, which confirms my two suspicions. 1. she was upset because she had to go bad 2. Claire is VERY capable. This is something that I really struggle with. I often wonder how often I set the bar too low or expect too little of her. Most often it is selfish. Like when she is screaming in the car and I know she will calm immediately if I put on her favorite music, but I am pretty sure that would only teach her that I am a puppet that is easily manipulated. Then there are times that I am afraid to try to have a high expectation for fear that I am just setting her up to fail because she has a very legitimate disability that doesn't let her always do what she wants to. For example, I wouldn't want to say, hold it until we get home, because she really might not be able to. I am curious, how have you dealt with this? Do you ever find yourself feeling like she is capable of so much if you could just be better at supporting her?
mom pretty well and am so incredibly proud of her for throwing Avery such a lovely birthday party. It was a small miracle that we were able to attend. For starters, they live and hour and a half away from us and on top of that, it was a pool party, at a country club. While that doesn't sound like a bad thing (and it really isn't) it isn't our thing and I knew that it might feel uncomfortable being so far out of our element. We were prepared for both of our children to start screaming within a few minutes of getting there and had a few different exit plans already worked out. In fact, we had a lovely time! We went to a real birthday party, all four of us and everyone enjoyed it. It did help that Katie was there to sit with us by the side of the pool and Chloe didn't crack her head open as we figured would most likely happen. As the party wound down we packed up our crew and headed up to Sacramento where we would spend the night and then see Kathy, the girls favorite Aunt. By this point Jared and I were just beside ourselves with excitement that we had done so much and it had gone so well. That was dampened slightly when Chloe screamed so hard for so long that she vomited all over and again when Claire was screaming as we walked through the lobby, went up the elevator and most of the way too are room. But through this we learned that we are getting better at clearing the hurdles, that a few intense moments don't ruin a day and that when everyone stays flexible, it is way easier to bounce back. Bounce back we did! Claire enjoyed watching motorcycle racing, we went shopping with Aunt Kathy and finished with a lovely dinner at Joe's Crab Shack and a stroll around the old downtown area. I even got to eat my dinner, at the table, at the same time as the other adults!!! Again, something that I hadn't even thought to dream of. So with a belly full of snow crab (amazing!) and two happy little girls, we made the drive home. I couldn't help but think that it is seeing the families that are both two steps ahead of us and one step behind us that really help me to appreciate where we are today, what we have come through and the possibilities for our future. It is indeed good.
Tubthumping came on. It was perfect. It is an anthem proclaiming "I get knocked down but I get up again. You're never gonna keep me down." I might keep getting knocks that I am not expecting, but I am going to keep going. I am going to continue to fight for my sanity and enjoy my days. I have to say as hard of a decision as this was, it really feels good. I am in control of some things and I think that I am making some good decisions with those things.