Julia ZhiKuang is 18 years old. What a journey! Unexpected and unimaginable but the very stuff of our family. A very, very happy birthday, my dear girl!
State of my world:
Julia’s head scratching has not abated with the delousing and aftermath. She is losing hair and areas without hair are increasingly visible to the casual observer. I think she is doing most of her scratching at night before she goes to sleep and when she is alone in the bathroom. Anxiety, habit, stimming or something else? Years ago, the way she finally stopped scratching her skin was on a three-strike-and-she-was-sent-home-from-school program. It was radical and it worked. I don’t know right now how much scratching is going on at school — I’m checking. I don’t think that school staff would be willing to put such a discipline into effect. Of course, if it is mostly at night, that it wouldn’t work anyway. I am in full worry mode. We will visit our doctor next Tuesday and her shrink on Thursday. OT is working on it as well. Needless to say, I am without control.
I spoke with a local reporter yesterday about Shabazz High School and my experience last spring when Julia applied for admission and was first asked for an interview and then rejected before the interview took place. I talked about inconsistent messages and requirements, and apparent exclusion of kids with IEPs. I told him that just before school closed for the summer and we were about to travel, how I got a call that they were reconsidering everyone who had applied and was rejected. (I don’t remember if it was rejected without interview.) Julia couldn’t interview before traveling and when we returned home, I check out the requirements again. Julia had been summarily rejected for not doing grade level math. Neither the requirement for doing grade level math nor her math skills had changed. I decided not to put her through an interview. I acknowledged to the reporter that the school has been good for kids there and I didn’t want to jeopardize the school for those kids. And yet, what of kids like Julia? I am conflicted. Continue reading
Julia survived cheer camp. So did I.
From what I heard from the coach and what I gathered from Julia, she did not participate much on Saturday. She was content to sit on the side and watch. I have seen her do that before and if such behavior helps her integrate into a new situation, it is a good way to find herself. It must have been pretty overwhelming with cheer teams from all over doing all those cheery-type things very loudly. An unfortunate side note, Julia had her phone with her and she spent a lot of the day texting with girls back in Madison. On one hand, it was good practice, but on the other, I’ve seen this behavior consume all her attention and make her unavailable to do much else. The next day, Sunday, Julia did participate and she said she had a good time. I don’t think she performed with her team at the end of the camp but she enjoyed what she did. Continue reading
There are a few more vacations days with pictures that I want to remember that I have not posted. I’m going to retro-post the entries. This post is written on 14 August. I do miss the loveliness of an Australian winter day.
This was our last full day in Australia and we packed in as much as humanly possible into our hours. We started our morning at Taronga Zoo. It was so easy to hop onto the bus a few steps from our cousin’s house, we could have been home. One of the sweetest things about re-visiting a travel city is that each time we returned to Sydney–we had three stays of varying lengths–we grew more comfortable. Certainly, there was still lots of the city and surrounds that we did not experience, but because of our cousins’ and friend’s personal tours and our own wandering, by the end of our travels, we moved around the city easily. Continue reading
(Written 26 August 2018).
On Monday, we visited the Sydney Fish Market and just typing those words, my mouth begins to water. It isn’t that I haven’t been to wonderful fresh fish markets on the east and west coasts of the US but midwesterner that I am, my trips are few are far between. Reminding me somewhat of Seattle’s Pike Place Market but the Sydney Market was all about the fish. Busloads of Asian tourists pulled up and emptied out ready for lunch. So were we! We ate outside on a deck overlooking the water. Sea gulls competed for our sushi which drove Julia a bit nuts. After our sushi, Steph suggested we get some very big shrimp, cooked and ready to peel. I didn’t think we could eat any more but more than a dozen of the shrimp disappeared very quickly. Continue reading
(Written 28 August)
Sunday with cousins.
Sunday morning Scott picked us up for a drive and more Sydney views. Writing a month later, I don’t remember the interesting walk but perhaps I can impose on Scott to remind me. The cliffs are wild and beautiful. It was a spot where people trying to end their lives pondered jumping, but nearby the top of the cliffs a solitary man lives in a small house. When he saw people contemplating their final decision, he would come out and speak with them, invite them in for a cup of tea and somehow I imagine, a slice of cake. Life the story of the boy throwing starfish back into the sea, the kind man managed to turn many people away from the sea. Continue reading
The week has completely run away from me and now we are traveling in three ( yes, 3! Eek!) days. So, before traveling I am posting pictures from our NYC visit and from the Penguin Project production. And then I’ll get back to travel prep.
Favs from MOMA:
This is a picture of Julia walking to class. Her case manager sent it to me yesterdy. He wrote: “Hey, I was following Julia and a peer in the hall, talking like best buds. Not sure who her friend is, but I’m happy she has made strong connections with reg ed peers.”
It is a great picture.
When I looked at it, my first impulse, after a good hearted motherly smile, is to race to the story of Julia making a friend, going over someone’s house, talking too long on the phone, telling secrets to someone (not me), going to a sleepover, having a party. And then, I stop. Continue reading
It seems like a long time ago now that we, make that I, reclaimed Christmas. I don’t expect that the winter holidays will always be perfectly smooth but our last Christmas and then New Years cruise seemed to reset my holiday clock better than anything else. Distinct differences and concrete plans worked miracles. Prior to last year, I was not only missing our pre-death holiday ‘routine’ but also missing the friends with whom we shared many thanksgivings and a few Christmases—people and plans I thought would never change. Then there was change. Ah, embracing those Noble Truths.
Last Friday, another holiday clock ‘got’ reset— Passover. David and I enjoyed hosting seders since before we were living together. How many years ago was that? (Only Jan knows.) Our seders evolved and sometimes disappeared while we were in school or traveling. When we lived on Washington Boulevard in Indy, we had room for big parties and we indulged. I don’t remember when David started writing our Haggadahs or when we began expecting Cheshire to play or write something for the celebration. We cooked, many times for days. I think it was the only time I’d take a day off work to get ready. Continue reading