Little T's first steps
Not to be outdone by his sister, Little T took two steps yesterday from the couch to the coffee table. Go Little T!
A mom with a movement disorder blogs about life with a typical daughter and a son with special needs including a left arm with a shrinking tumor. Both kids delight and challenge me everyday. "May you live in interesting times!" is a Chinese saying that can be considered both a blessing and a curse. I always live in interesting times. Lately I've tried to make this into a more of a recounting of the boons in my life aka the things I have to be thankful for.
Not to be outdone by his sister, Little T took two steps yesterday from the couch to the coffee table. Go Little T!
Special K has asked me several times to learn to read. Before we started, she could already read several words like "ok", "no", "on" and "Deeprun Tram".
As soon as the reading books arrived, Special K wanted to read them. She read the first two books of the first set of the Bob Books. Together we read the first book of the first set of Dora Phonics Together we read the first Dora book and book 9 of the Bob books. The Dora books are way too advanced for the absolute beginning reader, but she really loves Dora.
I taught my sister to read almost twenty years ago, and the Bob books are a lot easier and more interesting than the Peter and Jane books we read. However Special and I started to have the same frustrating problem where phonics didn't make sense to Special K. They never made much sense to my sister either. Sure Special K knows every letter sound and can sound out C A T, but to get from there to the word 'cat' is a huge leap.
In reality I don't read that way and my mom tells the story of how she tried to teach me to read. "r-a-t, what's that word?" I replied brightly "Mouse!" I remember a teacher taught me to read in preschool, but I forget quite how.
I've memorized thousands of words and word chunks. On the rare occasion I encounter an unfamilar word, I never sound out the word letter by letter, I process it as a chunks. With my sister, phonics only made sense after she had learned to read as tool to learn harder compound words, not as a tool for learning to read.
I was beginning to think the same might be true for my daughter, but the Bob books are much more clever than the books twenty years ago. They have words like Mac, and Mat and rhyming words like bags and rags. After she read bags, I told her rags was very similar to bags except it started with r, and she got it.
I've heard of some other movement like whole language or some such. If I had more time and patience, I might look it up. I took a brief look at this DISTAR book, and to be honest, it looked so tedious and difficult for the poor parent, not to mention the child. You had to move your hand in a certain way. A total nonstarter for a person with a movement disorder. And each lesson didn't seem to tell a story. What's the point in reading to a 4-year-old if you can't read a story? But then I'm afraid most reading theories make me want to beat my head against a wall. "Did you bother to make it fun and exciting?" as well as fit with your theory.
But if you have any fun and exciting recommendations, please let me know.
I buy organic milk, because they give tons of hormones to non-organic milk cows to make them produce milk. The other day I learned from
Now there's a Dairy Scorecard which rates organic dairy for the entire country.
If you live in California, Straus Family Creamery and Clover Stornetta are both rated 4 out of 5 cows. Organic Pastures is rated 5, but it sells raw milk, which I would never give to young children, and I've never seen it anyway.
Interestingly I do think the Straus Family milk tastes the best. But it's somewhat annoying as it's not homogenized. I didn't regularly buy Clover Stornetta, but now I'll look for it. I think organic milk tastes better in general. I can drink 1% organic milk. Non-organic milk, I need 2%.
I have a new title for my first non-fiction book. It has sat comfortably for over a week with me. I think this one will stick, at least until the publisher gets a hold of it.
On Saturday morning I met with a mom, a friend from my Haas days about one of the most difficult chapters of my book. When I told another mom I was writing this chapter, she gave me a horrified look and said with a pregnant pause "That's a weighty topic.". Frankly I agree, but it belongs in the book. My friend thought overall it had the right tone, style and content. Such relief.
I feel like a new mom to this book. I feel like the book chose me and it's not an easy child. It keeps me up at night. It makes me cry. It makes me relive a year I'd rather forget. Sometimes I feel just as bewildered as any new mom. But at last, with some helpful comments, the book proposal has passed from its ugly and awkward newborn stage to a more polished adult form.
As a new mom at times I knew I was winging it and I feared the authorities would find out this gimp had this baby girl and come take her away. I don't feel nearly as scared and insecure as I did in the first few weeks of motherhood. It is after all just a book. And I also know a lot more about writing than I did about motherhood. But I've also learned that just admitting it out loud helps a lot.
On Saturday I was pleasantly surprised. I half expected the mom to tell me 'bad things'. Instead she said it was really good. I'm competent. I don't suck. I accomplished something really difficult.
I still have a long way until a complete book, but amazingly I'm a third of the way there. Part of me knows how this happened since I sat there pounding away on the keyboard, and gods know the revisions have been painful, but part of me is as amazed as any mom. "Look at how it's grown!" I exclaim.
Last night we went to a lovely party and my friend Tamara performed a feeding miracle with Strata's turkey chili.
Little T ate at least 30 kidney beans. He's never eaten that much in an entire day before! Tamara put each kidney bean on a spoon. He took the kidney bean between his finger and forefinger, put it in his mouth, chewed and swallowed it like a normal person. I was so shocked and amazed and happy.
He will sit and eat for fifteen minutes. But normally eating one tiny toddler bite of food literally consists of a one-minute inspection. It's a combination of a fine food taster, a royal food tester for poison, and toddler food masher. He twists and turns his morsel of food inspecting it from every angle. His eyes squint suspiciously. If the food fails some part of his test, he throws it on the floor. Next he delicately touches the food to his lips. Then he inspects it again and puts it whole in his mouth. He spits it out and inspects again. Then he chews it once, carefully extracts it from his mouth, and inspects again. It takes a very long time to eat a piece of food if you can only handle tiny pieces and take out the pieces between each bite. Therefore in fifteen minutes of eating he manages to eat only one to two tablespoons of food.
A couple days ago he ate half a sausage and we were also amazed. I think switching to Prilosec is really helping. Or his GI system is finally healing from the chemo and steroids. Or Tamara really is a miracle worker. But I hope for Little T's sake that he doesn't need Tamara to eat properly, because she lives in Vancouver.
I spent Saturday and Sunday morning alone with Little T. C and Special K went on their annual camping trip with some other families from our playgroup. We all had a lovely mellow time. Little T basked in all the mommy attention and smiled and laughed most of the time. Even at bedtime, his fussiest time he didn't cry, too bemused at the novelty of having his mommy put him to bed. C and Special K hung out and played with all the other families.
I really enjoy being able to spend time alone separately with each child. I spend time with Special K every day when Little T takes his nap and Little T gets his time when Special K goes to preschool. I like how C and I can take one child or take both children.
I'd been feeling vaguely wistful that a friend of mine was pregnant with her third child. Before we had any kids, C and I had originally planned to have three children. Then after Special K was born, I wanted one and C talked me into two. But the mystery third beckoned. I wondered what a third would look like. I still thought having a third seemed crazy with all Little T's medical needs, but that reason always seems lame. Not to have a child because your second child is so demanding is not a satisfying reason. It doesn't give me the sense of completeness I need to say "We're done."
But this weekend gave me a sense of peace. I love my family the way it is. We have four different but compatible personalities. Fortunately C and my complementary personalities combined to produce siblings that not only get along for the most part, but seem to genuinely like each other. The mystery third's personality could shake things up. Three or five's an odd number that leaves one out and we're definitely not having four. So we're done. As we say at Bryn Mawr, "done is good." Are you happy with the number of kids you have now? Why or why not?
at
6/26/2006 03:40:00 PM
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Labels: Motherhood, My cogent opinions
Poor C is sick on Father's Day. He had a fever of 100.4 last night. His fever is down to 98.9 now, but he watched Brazil beat in Australia the World Cup then went back to bed.
at
6/18/2006 06:38:00 PM
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Labels: Silicon Chip of Life
When I have time to put butt in chair, I'm writing or doing something involving writing. It seems to make me happier overall.
I submitted my breastfeeding article to Mothering. I never thought I'd say this, since before Little T was born, I'd rather stick a fork in my eye than submit anything, but I was glad to submit something that was done and I like. As we used to say in college, "Done is good." Thanks to C and
I'm ironing out issues of my non-fiction book proposal. The biggest issue I need to resolve is a title that clearly communicates the main theme of the book. I thought about it a lot, but failed in my first attempt. Titles matter a lot to me when I'm writing. What the publisher names it is a separate issue and I'm flexible.
I revised my science fiction story "Cascade". It's an experimental story, quietly twisted. C says "it's journalistic in style." It figures. I write mostly non-fiction. It's still not done either. I work on it as a break from my book.
Jane Yolen answered my question "How deep do you think the divide between children's and adults' publishing is?" in her journal. Thanks Jane Yolen.
I also critiqued my friend Mary Anne's new novel.
at
6/18/2006 03:44:00 PM
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Labels: Writing
This 1.1 million-dollar house on our street is almost identical to ours. Both are 3 bedroom 2 1/2 bath houses built nine years ago by the same developer. No, we don't live in a mansion. Yes, housing prices here are crazy.
I got woken up by the 4.7 earthquake this morning. So did Little T. Fortunately we both went back to sleep. Normally I totally miss earthquakes, but I distinctly felt and saw the entire bedroom shake. C felt nothing. I was slightly worried we'd get a big earthquake before we sold our Oakland house. Well that house is all sold now, but perhaps the process gave me earthquake sonar. I've wanted to feel earthquakes since I moved out here over twelve years ago, and never felt a one until today. However I hate being woken up. So I'm not sure whether to be excited or annoyed with this newfound power. Maybe it wasn't an earthquake I felt, but sticker shock from the house down the street.
finished a couple more chapters of my non-fiction book. I revised an article about breastfeeding which I plan to send to a parenting magazine. I sent GREG off to two more publishers.
I signed up for the Foothill Writer's Conference.
We saw Little T's hemo doctor and she said that immunowise he's okay to do everything, which is great news. His blood counts were normal.
We also saw his GI doctor. He has lost weight down to 10.05kg. Some of that may due to losing the excess water he had from the steroids. He's grown 3cm to 76cm. His doctor says Little T is the size of an 11 month old. We had a long discussion about eating and growing. The upshot of it is it's a long long road and that we're going to gradually increase his dose of Prilosec to see if that stimulates his appetite. So far it seems to be working. He actually ate three bites of cheese for lunch as opposed to no lunch.
Okay now I know I'm an bad mom, because this series of doomed ducklings made me laugh out. I think mostly because I think it's a twisted metaphor for motherhood. You try to get your ducklings safely across the street. You're looking for traffic and all kinds of other bad things, but you miss the grating, because it doesn't really affect you. Then the world thinks you're bad or evil, because your ducklings fall down the drain.
Last night I thought I had done something for sure that marked me as a bad mom and would mean my daughter would need therapy when she grew up. Through my stupidity I scuttled our trip to Disneyland this weekend.
Ironically her desire to play Disney games began the whole debacle. The laptop was on the coffee table and she needed help to get the game started. I knelt down to help her. My knee discovered not soft carpet, but a sharp pointing object that stabbed my kneecap. I slipped off this object and onto my daughter's foot, bruising her little toe. In one fell swoop I injured us both. While my injury appears to be mild, walking the few blocks downtown last night made it swell. I'm not up for the marathon amount of walking Disneyland entails. C could have gone in my stead, but sadly we discovered Special K's foot was injured too when she refused to walk downtown. C carried her on his shoulders. And yeah my daughter is more sensible than me since I should NOT have walked downtown last night.
Last night as I lay upstairs putting ice on my throbbing knee, I cursed my stupidity and my clumsiness. Special K has been asking about going to Disneyland for weeks. I wondered if Special K would ever forgive me. I wondered how I'd make it up to her.
But I have the sweetest most forgiving daughter. When she came into our room this morning, she gave me a big hug. She said "It's fine to go to Disneyland later." And I haven't heard a peep about going to Disneyland since then. She seems content to play Disney games on the computer instead. We're going to make the attempt again sometime in July.
at
6/09/2006 03:47:00 PM
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Labels: Falling Down, Motherhood, Special K
Special K sang today at her school assembly, such a singing star. She sang all the words and did all the motions of all the songs. Adoring parents videoed her performance. Last year she huddled on the mat, afraid of the crowd.
When I had to leave to go home for Little T's babysitter (C was staying with her at preschool), I asked her for a hug. She gave me a huge hug with her arms and legs and a big kiss too. So wonderful.
As I was driving home, I felt sad both that my girl was growing up and that I hadn't really adored her fully in a while, at least not with my full rapt attention. I'd been feeling tired, or focusing on Little T and his numerous needs, talking to C, or preoccupied with my book. In response she'd been trying to reach out to me, sometimes in positive ways, like trying to pretend we're Wonder Pets, and sometimes in negative ways by whining. And she deserves my full rapt attention just as much as Little T or C. I need to set up special time with her. I did before, but not on a consistent basis. We both really enjoyed it and it was really good for both of us.
at
6/08/2006 06:41:00 PM
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Labels: a scrapbook moment, Joy, Motherhood, Special K
In an ironic twist on the whole physical therapy thing, Little T stood for the first time yesterday. He screamed with terror the whole time, but he stood for a good 20 seconds. C and I were so amazed we just stood there cheering.
Yesterday he also stood on tiptoes at home for the first time. He leaned on a stroller to look at Tovar, [info]smileycynic's baby.
A very kind and generous PT on my special needs parents list drove down to evaluate him. Today distracted with toys, he stood longer and without crying. Honestly he has made amazing progress in the past two weeks. It's like he heard he might have to have physical therapy again and decided to get a move on. She said he has all the skills he needs to learn to walk and he should learn to walk on his own. She said that if he doesn't learn to walk on his own in three months then to get him re-evaulated. That was great news. And I was so grateful to her for coming down and seeing him. That was incredibly nice of her.
So I'll meet with the CCS doctor tomorrow and be all nice. I'll see what he says. Because Little T may well make a fool out of me and stand there too. I'll be glad if he does well.
I still think something's wrong with his gross motor movement or balance and he will need help. Something about the naked fear in his eyes when he stood for the first time which I never saw in Special K's eyes. Sure she was scared, but not totally terrified. She was also thrilled to try new things. There's just something about the things he does sometimes that don't seem normal to me. The way sometimes he just slowly falls and doesn't catch himself at all. Other things that I can't name right now. Maybe he won't need help right now, but later. Maybe he has sensory issues or something. I don't know what his problem is. I just know he has a problem. I trust my gut on stuff, because it's never let me down and when I ignore it, bad stuff happens. So I'll be watching my boy.
I thought the question was interesting enough to pass along. I also wondered Do you see the world the same way I do? Or are you visual, aural, or kinesthetic dominant like the textbooks say?
I don't think I'm visual dominant, aural dominant, etc. Those ways of viewing the world never made much sense to me. When I read a book, I read the words, and memories are formed. These aren't movies or songs or 3D or whatever anyone else has described. I read quickly, so I'm not consciously thinking about this. It's only later I realise I have these memories.
Memories are formed around emotions and feelings, events or characters. There's a single imprint of one or two impressions that form the memory. It could be a taste, touch, sight, sound, feeling, or words. Those are in sharp relief. Which one/s it is depends entirely on the context. With books, words are usually involved, but not always. Then the rest of the impressions are less well defined. Sometimes the sound is music I was listening to while I was reading the book...if I thought the music somehow matched the book. When I hear a particular song, I still remember a particular scene in a book I read as a teenager. Memories form chains. That book reminds me of a talk with my father related to that scene. Particular details stand out that are relevant to me and others fade away. I don't remember what my father or I wore, but I remember the cover of the book in detail and what my father and I said.
When I describe things in my writing, it's because that detail evokes a memory. And when I write, I'm thinking about that memory. Sometimes I decide the scene needs more detail, so I'll go back and explore more.
I used to read and write poetry when I was younger. Now I prefer the more total immersion of prose. Perhaps I'm just more impatient.
at
6/02/2006 06:45:00 PM
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Labels: Writing
Our house in Oakland is sold! We received three offers all above asking. It went for 10% above asking. Woo hoo! The money's in our bank account. Our real estate agents are wonderful.
at
6/02/2006 06:44:00 PM
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Labels: a scrapbook moment, Joy
Gconnor has Sophie, Killer of Socks Well, our cats are also brave sock killers. They hunt down socks from our neighbours and bring to them to our back porch. Right now their trophies include a blue baby sock, a man's white athletic sock and a woman's black sock. I have no idea where they came from. And they remain on our mat. I can't match my cats' bravery. I hesitate to knock on a neighbour's door, sock in hand, and say "Excuse me, but I think my cats might have stolen your sock. Does this sock belong to you?"
I wonder how the cats steal these socks. Do our neighbours hang socks out to dry and the cats steal from the line? Do the cats sidle into the house all plantative and folorn and while the neighbours' backs are turned, my cats sneak socks? Do the cats creep into the house on little cat feet and whisk away socks? The cats aren't saying.
If you've read this far, you found my secret. I don't have my full journal here. My full blog is at waterowl.livejournal.com.
I posted all my public entries from here going forward. I went through a bad patch where I felt too exposed here and retreated to livejournal. It's also kinda a pain to post to two places, but there's prejudice against livejournal.
I may post more of my old entries here, especially if you comment here and ask me to.
I lost ten pounds because I go to restaurants less often. At restaurants I tend to eat far more than I would normally. A restaurant typically serves bigger portions than I'd serve myself at home. At restaurants I am distracted from what I'm eating, because I'm talking. My sister tells me that restaurants pile on the fat to make their food taste better.
Now about twenty minutes after I leave a restaurant, I feel this overfull feeling that I hate. I used to like it, but now I recognise it as "I ate too much." I'm trying to teach myself to eat less at restaurants by telling myself I can take it home.
Think I could make a mint selling a book with my new diet?
Sorta following a similar principle. C just told me about a diet where you eat light virgin olive oil and sugar every day. It's supposed to reduce your appetite so you don't overeat. It's supposed to fool your body into a lower set point for your weight.
I'm now within five pounds of my prepregnancy weight. Other parts of my diet include lifting a 20lb baby and forgetting to eat from stress. I guess that wouldn't sell too well. But seriously I hope the weight loss is a result of my body gradually returning to normal after months of high stress, but I still need to do better,(Edited to clarify) not in losing weight, but in taking care of myself. My weight has never been a real issue. The few extra pounds has just been a symptom of stress and lack of exercise. I'm fortunate because in someone with worse genes or worse general food preferences (I just naturally like fruit and vegetables, can't stand soda, and I feel sick if I eat too much processed foods), it could easily be fifty pounds or more.
One of the items still on my to do list is to buy an elliptical machine. We decided to wait until we sold the house. It will close on Friday. I'll give full details about the sale then.
at
5/31/2006 03:48:00 PM
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Labels: My cogent opinions
I slide my socked feet into my shoes with a soft whick. Little T stops playing with the respite care worker "aaah?" He scoots on his butt, swinging his left arm, and knuckling his right hand, full speed ahead to his traiterous mother. "Aaah" I manage to tie both shoes before he reaches me, but not to stand up before he pulls up on me. He clings to my shirt and pulls "Gah" he says firmly. His meaning and motion very clear "Take me with you." I sigh and hug him tight and say softly, "I'm sorry sweetie. I can't." He arches his back, his face crumples into a ball of misery, and he bursts into tears. He doesn't understand much about the effects of steroids, but he does understand this. He's being left behind. Again. He wails at me and pulls at my shirt again. I hug him and tell him "I wish I could take you with me." and I remember other trips to Trader Joe's.
Back then I used to curse the fact that Trader Joe's carts only held one child. Little T rode in the front. I bought a nursing pillow that also converted to a shopping cart seat cover. Before Little T, I regarded such things as rather a joke -- a marketing ploy for overprotective parents. Special K rode without one, ate dirt and sand. But now Little T rode with a shopping cart seat cover to protect his medically fragile self from all the germs. Special K rode in the back in the main shopping cart. I piled the groceries around her, burying her in frozen peas, bread, milk, and Weetabix. She'd laugh and hold up a chocolate bar. Little T would laugh too. He'd try to grab it from her, but he was too far away. They'd giggle and giggle. Then Special K would hold up a tin of tomato sauce. This game continued until Special K was swimming in a sea of produce.
We'd reach the checkout and the checker would often stare. Some would comment on our strange arrangement "Looks like she's buried" "Is she one of the groceries?" One was almost afraid to reach in the cart. Special K would helpfully dump the food onto the counter. "I'll help!" she'd say proudly. She'd pretend to swipe the groceries on the laser.
Now our shopping trips to Trader Joe's are much more sedate. Special K tried sitting in the cart a few times without Little T, but it wasn't the same. Now she sits in the front. Our groceries stack neatly in the cart. Nobody giggles. Nobody comments. I used to count the days until Little T would be off steroids, and we could all shop at Trader Joe's again. Special K did too. She used to tell me "I want to go to Trader Joe's with [Little T]." But now she doesn't anymore. I don't even know if Little T remembers anymore. But I do and whenever Little T tugs on my shirt before I go to Trader Joe's, I feel sad.