Change. The only constant in this world, and I think I might hate it. Oh I pretend to like it: time change, when we get to sleep in, or see the sunrise. I like to change the color of my hair. Really I just love a new haircut. I like to go on a road trip and get a change of scenery, or try a new cocktail at a new bar. But really, none of those things are very risky. Not at all. They have very little consequence. Even if I bleach my hair out to Gwen Stefani white I can get it back (or most of it, what hasn’t fallen out) back to a normal-ish blonde color that doesn’t make my mother gasp.
I like to joke that “apples don’t fall far from the tree” when it comes to Autism. Jake is such a combination of the people in my family, and I can see parts of his personality in each of us: his sense of humor, his lack of dexterity, his determination, his migraines, his struggle with communication, even if it is exaggerated in how he demonstrates the behavior, I can almost always get a glimpse of how Jake became Jake… including his need for things to be the same; and that he got from me.
This doesn’t mean I’m not flexible, I am, but I always have multiple threads going, so even if it looks like spontaneity, I am hopefully already prepared for that possibility. I feed the kids at the same time every day, even if it means we add in meals with other people at other times. Jake’s body clock does not alter with season, or place, or time zone, so that means he eats 5-6 meals in Hawaii, and goes to bed with hours of sunlight left in the summer. He has worn the same brand of pants for three sizes now, and I have been known to buy the same shoe in two colors if I really like them, or two pairs, for when one of them eventually wears out beyond repair.
I work hard to get things to a “steady”. It’s not settling for anything, I just want to keep the boat afloat, with everyone on it, with provisions and direction. Not to go overboard (ha!) with the metaphor, but I don’t even care sometimes if we have the sail up. I just need to know where we are headed and know that our crew is ready. We can float in one place, as long necessary, if we are together and (mostly) happy.
So Lucy is starting kindergarten in the fall, which means we need to decide now where we want her to go, and I am a wreck. Change. Again. Or maybe not. Or maybe. Aaaaghhh.
When Jake went to kinder it was sort of a surprise. I thought he was going to stay one more year in his early intervention preschool. I thought I had time to ponder the choices, visit schools and determine which disability we would try to place, autism or CP. Instead I was sort of bombarded with “Uhm, Jake is really big (tall) and don’t you think he should move on to kindergarten so he doesn’t step on any little ones who are just entering preschool?” and somehow I nodded believing that height had something to do with matriculation.
Then I visited two classrooms and picked one. I made the wrong choice, or a bad choice, because I’m not sure the other class would have been right, but I know where he went was wrong. I didn’t ask the right questions, and when I took Jake for his first day I was greeted with aides who received no direction, and a new teacher, who spoke very broken English, as it was her very-distant-second language. The class had a mix of kids with such a wide variety of disability that there was no teaching. After the first month I learned that Jake spent most of the day in a Rifton chair buckled in, and rolled from table to table. I spent the first semester in conferences every week, and the second semester trying to find another placement. I felt like a horrible mother. We got him a new placement, and two years later, when he needed a different setting again, we found him Wunderskool. Now he is happy, and healthy and thriving, and as we settle-in to the back half of his second year there I am finally breathing. I had not felt steady since Jake was three.
Then I visited two classrooms and picked one. I made the wrong choice, or a bad choice, because I’m not sure the other class would have been right, but I know where he went was wrong. I didn’t ask the right questions, and when I took Jake for his first day I was greeted with aides who received no direction, and a new teacher, who spoke very broken English, as it was her very-distant-second language. The class had a mix of kids with such a wide variety of disability that there was no teaching. After the first month I learned that Jake spent most of the day in a Rifton chair buckled in, and rolled from table to table. I spent the first semester in conferences every week, and the second semester trying to find another placement. I felt like a horrible mother. We got him a new placement, and two years later, when he needed a different setting again, we found him Wunderskool. Now he is happy, and healthy and thriving, and as we settle-in to the back half of his second year there I am finally breathing. I had not felt steady since Jake was three.
My close IRL friends are probably, no, I know they are done with this conversation. I keep talking about where Lucy should go to school because, while I am generally a very decisive, opinionated, independent thinker, in this case, I want someone else to have the answer, tell me it’s the right thing to do. I have at least one very close, trust-worthy friend at each possible location, so I can’t even use the “Who can care for my child if there is an earthquake and they need to take her for three weeks?” Because, yes, tragically that is how scary my brain is…
This has taken up all of my free-thought, and a lot of my previously-allocated-for-other-things thought too. I feel a bit silly being so upset by it all, but last time I did this I screwed up, and I certainly can’t handle that feeling. And I’m not having any more kids, so it’s sort of the last chance I get to do this right. And, most importantly, she is a neat kid, who is smart and funny and I don’t want to send her to the wrong place.
I know what I want: I want same. I want no change. I want to put off for another year, or two, any sort of thinking about change, but I need to really think because there are options here, and financial impacts, and logistics to consider.
So I have been on the tours. I have all the paperwork. I’ve even asked the four-year old what she wants, because, you know, that's responsible parenting. She very capably decided that she could go to at least two schools if the hours were different, and then she put her hands over her eyes and said it was “much too hard to decide."
I agree.
I agree.
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