21 May, 2008

Drawn Together

This is the piece of art Jake did with his buddy as part of an art program we put together in our school district.

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18 May, 2008

17 May, 2008

My Dad's Student



Out of all the students we have seen over the years, at the mall, the museum, the zoo, BART, Safeway, you name it.. after teaching for 30+ years in the OC, clearly my dad has had a lot of students...this was, by far, the best "Hey Dr. B. I was in your class at FCC/UCI and I loved you class moment.

That is Chip, of Chip and Dale at the character breakfast at Goofy's Kitchen in the Disneyland Hotel.

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15 May, 2008

Hotter than DWC

Is there anything hotter than Deadwood City right now? It is 103 in my backyard. Jake is disturbed by the lack of outside play.. I am perhaps remembering that as a kid in OC we had days that were too hot and smoggy and were not allowed to play outside for fear of triggering school-wide asthma attacks.

I don't think it is even smoggy here, but I still worry about Jake, who would not necessarily know that he was getting overheated, playing outside to long. SO he is bored and tapping a plastic rake, and spinning a lid... and that makes him happy, so stimming will be okay while I pack Lucy's things for our trip.

13 May, 2008

Elevated beta-Alanine

Yeah. So that's what I've been Googling for the past hour. I don't even know what made me look at a 4 year old blood test with a spread of numbers indicating the various levels of amino acids for Jake... but I started looking, and then I really started looking because I remembered that he had elevated beta-Alamine.

So what? So nothing. Every few months or so I pick all of those "odd" things out of Jake's old medical records and Google them again. It happens sometimes that I will find an article at www.pubmed.com

This time I found another parent who has a boy who had a new autism dx and elevated beta-Alanine.

So now there's two of us Googling it, and probably only stumbling upon our own queries.

Anyone else ever had a kid with Cerebral Palsy ataxia, ADHD, panic disorder, sleep disturbances and Autism who had a blood screen that showed elevated beta-Alanine?

Go. You know you want to check that last "AMINO ACID, PLASMA" screen

11 May, 2008

Descartes' Birthday Present to Me


I forgot to post this earlier. My birthday is in February, but it took a long time to get framed.. so very kind of him, it's the cover of the book Can I Sit With You? Descartes is always good at thoughtful gifts... for Mother's day today he managed to find good candy corns (in May!) a kumquat tree (one of my favorite fruits), and we went together on a family adventure up and down the Peninsula searching for and eventually buying backyard patio furniture.
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That's blood on Jake's face. He started bleeding while we were in Ikea. He wasn't upset, just sort of cracking up (which is, now that I think about it, a way that he deals with pain ugh.) We sort of made a hurry up decision and got out of the gigantor store instead of fighting our way back up to meatballs in the cafe which we had planned on (Lucy was singing a meatball song.. poor girl.)

Instead we drove the kids through McDonald's. Lucy and Jake were pleased to see chocolate shakes, and Jake apparently has entered a new level of eating.. he now eats like a man. A man. Crickey he ate a 5 piece chicken select meal with a bloody mouth. Lucy then proceeded to pour nearly an entire shake down the front/side of her. We heard a large "Uh Oh!" as we had started to drive away.
It's a little blurry, but here's the photo...

10 May, 2008

Regret

I haven't been posting much lately. Twitter has been fun (see right hand bar below) but in general I think I have been very down on myself about how I am helping Jake.. or rather not helping Jake become the little boy we think he can be.

I am constantly tortured by how annoyed I get. How I lose my patience. How I must hire someone to do tasks with him that make me sad and frustrate me and keep me from caring for the rest of my family. I watch other women with their kids, all the things they do to help their kids grow, and I feel a constant, ever constant feeling that I am not doing enough. That I am in fact not doing anything but waiting for time to pass. My feeling of regret for time lost, for therapies untried, looms over me until I can barely breathe, let alone write down what I am feeling.

I am so ashamed that even this outlet can't hold it all. I have the very best of friends and I can't even bring it up because I am so scared they will actually say out loud how disappointed in me they must be. I guess it's time for therapy.

or at least time for me to read Dear Abbey... who I variably read or don't read since I rarely get to a newspaper lately, but this morning I glanced at her Q&A and saw a line that I will keep in my back pocket "regret is the cancer of life".

Is there chemo available?

06 May, 2008

gonna make a poor man's pina colada with pineapple juice and malibu rum. yucky yum yum.

My Friend Betty

Betty died this morning. Of course I would have known that she was sick had I actually delivered the library books last week when I was supposed to, but my life got in the way and she fell ill and went to the hospital, so that when I went today (and towed along my best friend and her precious 2 1/2 year old to visit some "Grandmas") she was gone.

Talk about feeling like a heel for not delivering the library books on time.

I have been volunteering for the library since 2003. I think it's been that long. I deliver books, to a few others previously, but consistently for the past 5 years 5 YEARS! to Betty and her friend Marie at an "old-folks" home nearby. Marie is still alive and kicking. She told me not to cry. She reminded me that Betty was 91, and that she had a great life. and it's true, she did, but I will miss seeing her and hearing her stories and watching her take joy in my daughter and share concern for my son.

So here, for the record, lest I ever forget such a beautiful human are some things about Betty.

  • Betty was a smart woman, clearly using every year of her life to gather more information and hone it for precision communication. She was quick in conversation and more recently when she began to forget some words, she wrote them down, so she wouldn't get frustrated. She just carried her list, adding words as she lost her ability to recall them without the aide. I told her that made her pretty smart. She told me it was a pretty annoying thing to not be able to remember the word "muffin".
  • Betty was beautiful, and it was obvious, even at 91 that she had been an athlete, and not surprising at all that she didn't stop playing tennis until she was 82.
  • She was an artist, painting large canvases with all of the joy that color brings; the blues of the coast and the flowers of the field. Though her canvases grew smaller over the years, her love of color grew bolder, and her hand more free. I enjoyed every painting of hers I ever saw.
  • She loved my little girl, and was so, so pleased when I became pregnant with Lucy. She was so thrilled when she found out that Lucy was Lucy and not Lance or Lucas. And her eyes twinkled every single time I brought Lucy to see her.
  • She marveled at my husband's role in our family, ever impressed that he both went to work every day to provide resource for our family and managed to change diapers and bathe children when he came home. She said quite often that I had clearly chosen an amazing mate. (It is nice to be externally reminded sometimes.)
  • Betty had a great sense of humor, or at least one that I appreciated because she laughed at all my jokes, and was wry and dry right back to me.
  • She hated being old, which comforts me knowing that she doesn't need to suffer through it anymore. She was never in poor health that I saw, not really, but she was bored with an active mind and a body that wouldn't jump and leap as it had in youth. Since she couldn't run about as she had, she read, sometimes 20 books in a month.
  • Betty reminded me of my grandmother Lotte, a woman I miss every single day of my life. I felt so privileged, so lucky, to be able to have met a second woman who had so many qualities I admire.
  • She was a good friend to Marie, and ostensibly a loving mother, who raised three very independent daughters.
  • She was a good friend to me, always speaking frankly, openly, asking direct questions about Jake and always offering suggestions or encouragement.
  • Betty loved hearing stories about Jake's successes, and she always, always, asked about this health and development if I did not offer the information.
  • She loved beauty and color and music and filled her life, and even her small room with all of those things.
There are lots of things I will never know about Betty. She wasn't really my grandmother. I just borrowed her for a time. I somehow doubt her family will even contact me, although I left my information. I was just the library book delivery girl to their mother. They do not live near here, so they don't know that we visited once a month for nearly five years, that she knows so much about my life, that she encouraged me to have another child, even knowing that it was a scary, possibility that I would have another child with special needs. They don't know that she wept when she found out that Lucy was "just fine", and got weepy when Lucy said "Hi Betty."

They don't know that she gave my daughter a first birthday card and that we exchanged Christmas gifts. They probably don't know that Lucy and I made special trips to the flower shop for Thanksgiving, and Christmas, Valentine's, Easter and Mother's day, where Lucy picked out flowers or plants to give Ms Betty and Ms Marie.

It doesn't matter that they don't know those things, as long as Betty knew that we loved her, and I think she did. I hope she did.

01 May, 2008

Super Geek!

I just reformatted my computer. It's really not hard. Ijust popped in a disk after sorting through hundred and hundred of files.

In fact it was sort of like organizing a bunch of paper, setting half of them on fire then pulling out a new notebook.

My computer is no longer singing that high-pitched sad whine...perhaps I can rejoin the wired world.

We are back from Seattle and the show was fantastic! Sage was HIL-LARRY-US. I love to hear my husband laugh like that. More when am not so cranky because it was much too wonderful a weekend to spoil with computer drama.

We have a reading next week at Angelica's Bistro downtown, so make your reservations.

Wednesday May 7th 7:30pm
Angelica's Bistro
863 Main Street, Redwood City, CA 94063
Tel. 650.365.3226

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