29 January, 2008
Here is the kind of voice mail you want to receive from your child's teacher:
"Mrs. Alice" [this is said with a snicker because she knows I HATE it when she calls me Mrs.Alice.]
"Mrs. Alice, I am calling to talk to you about Jake. Nothing is wrong. Actually it is great news. Jake pooped on the potty." [in the background there are cheers and claps.]
Of course I called immediately.
Apparently Jake was having free choice and was playing on the ground with something (with some other kids in his class...also a big deal in my opinion.)
He got up, ran to the classroom door, and jumped up and down.
Bless his 1:1 aide's heart that she is so observant of his behaviors all the time, and knows many of the subtleties of his eyes and gestures. She said "Okay Jake, let's go to the bathroom."
They went across the hall, into the stall, she pulled down his pants and pull-up for him and HE POOPED. [note to self: Jake is going to KILL ME if he ever is able to read this...am I? ... oh never mind right now his stories are my stories, and I want to share.. so there]
So he pooped and Anna cheered and took Jake back to the classroom where everyone cheered for him. Anna told him he would have ice cream when he got home from school.
Instead I took ice cream for his whole class! He was very proud of himself, and very happy to eat an entire bowl of ice cream.
Just after the pooping episode Jake went to recess with his class. Lke most seven year olds he enjoys climbing on the play structures.
He climbed to the top of the structure then came down on a "bridge" area. He looked at one of the aides and it appeared he wanted to jump down to her.
She said "No Jake. It's not safe."
and he said "Let me!"
she repeated "No Jake." then, "It's too high."
and he said again "Let me!"
she told him "no" a final time.
"Fuck. Fuck. Fuck."
[note to self: NO MORE SWEARING IN OUR HOUSE!]
Again his language was perfect for the context (just not appropriate for a child?)
Squid pointed out that Jake has actually repeated a word now. We have always joked that his words are "disposable" he says a word on one day and it never appears again.
25 January, 2008
Jake and little Hawk are so precious. Hawk just plays around his feet and Jake does this kind of dance to avoid him. Wolf has stopped crying every time Jake enters a room. Apparently he has finally dropped the grudge against him (once, about 6 months ago Jake ran full-steam into him...whoops).
Went to the San Jose Children's Discovery Museum the other day with all of the kids and my dear friend Bridquet and her darling daughter. Bridquet has an older son with disabilities, but he wasn't there. I looked at her and said "I get it now. I finally get this place." She asked me whether or not we were going to cry about finally "getting" the allure of a discovery museum. How amazing to go to a place like that with a neuro-typical child, one who is interested and interactive and fascinated and pulling at my hand to explore something new at every corner. and climbing, and making friends and fighting for territory and talking about all of it.
More than once, I have taken Jake there, tried our best to enjoy ourselves and left after an hour, lamenting the dollars spent on admission, cruddy kid lunch and gasoline. Then more sadness at feeling like a bad mom for not wanting to take my special needs kid to a place, any place, that is not necessarily right for him because it causes me mental anguish.
We're getting better as a family. I am more brave. I am more tolerant. I have more reasonable expectations for myself and Jake and for the rest of the world, but it's a process...for now I think I will skip the season pass.
21 January, 2008
There are babies everywhere..or more accurately toddlers (her boys have just turned one)..and Jake has not stepped on a single one.
Jake has been very happy to play on the front deck since it hadn't been raining. of course now the rain is back and along with it very cold weather. I still let him play on the deck today while it was sprinkling. He came in on his own when it was raining too hard. He came in and when I asked him if he wanted some warm cozy clothes He stopped in his tracks and stood net to me. He let me help him out of wet sticky clothes that were hard to get off his body, and was extremely compliant in getting two layers of shirts on along with sweats and socks.
It seem like he is following directions better these days.
examples, last Sunday, his Oma, Cookie, went downstairs to say hi to him while he was playing in his room. She headed back upo the stairs and called behind her, "Jake,come upstairs and say hi to Papa when you're ready." He marched right upthe stairs behind her and went over to the couch and pounced on Papa.
twice in the last week: me "Jake if you want more to drink you will need to bring me your cup." and the cup is then off of the floorin the hallway and back on his little counter where he eats his breakast.
19 January, 2008
Last time we had daytime help with Jake was December 21. We have been out two times at night (after kids are asleep), but other than that I pretty much have been on duty.
Jake is back in school and Lucy goes to her little home daycare on Tuesdays and Thursdays for a few hours (or more)... so it's not like I have it sooooo bad or anything, but the afternoons can be really very hard, but they haven't been.
Jake and I went to The Psychiatrist last week. Jake is medicated. I know some people think this is wrong, but it the right thing for Jake, and for our family. When Jake takes Adderall he is able to be present in the classroom, follow some directions and learn.. he can also sit nicely enough to eat meals at a table. He can even manage to use a fork (pre-loaded by us). Basically, the extended release was wearing off as he got home from school leading to very rough afternoons.. rough like Jake couldn't sit for dinner, couldn't take a bath with his sister without kicking her, and couldn't follow any type of direction. We also saw tears, temper tantrums and, well he was just nearly beside himself every afternoon.It was the perfect storm..Jake has an expectation of how he feels all day, and it was gone, I have an expectation of how many directions he can follow, and he couldn't follow any, I am tired from being me all day, and, of course, we have "the Four O Clocks" at our house like any/all families do.
So we are now giving Jake 5 mg of a shorter release of the same med. Basically he is now in control of his emotions and his body until bed time. Phew.
16 January, 2008
Queer Open Mic
$1 - $5
at Vince and Pete's Three Dollar Bill Cafe
1800 Market St, SF
Queer Open Mic hosts Cindy Emch and Mollena Williams are hopping mad excited to be rocking out January with readers from the Can I Sit With You Project including Sarah Glover, Liz Henry, Michael Procopio and touring contributor SJ Alexander. This important book co-edited by special needs parents Shannon Des Roches Rosa and Jennifer Byde Myers is a collection of stories about schoolyard social experiences, both good and bad. All proceeds from the the event and from the sale of Can I Sit With You? go directly to SEPTAR, the fledgling Special Education PTA of Redwood City (www.septar.org).
Queer Open Mic is a twice monthly gathering of poets, performers, writers and artists of all types to come together and share art. Proto-feminist and genderqueer in scope, QOM aims to combine raunchy enthusiasm, warmth and community, unapologetic queer, radical politics and sweet rhythms to create a space for spoken word, poetry and performance that is multi cultural, multi gendered, completely inclusive and dynamic. QOM is hosted by Cindy Emch and Mollena Williams. Please show up around 7:30pm to sign up on the open mic list. You're encouraged to read one piece of work that is five minutes or less. And by encouraged we mean threatened with spankings, shoe throwings and general hilarious tantrums if you don't follow the rules.
About the Performers:
Liz Henry lives in many intersecting communities, as a feminist, poet, translator, blogger, science fiction fan, queer & genderqueer writer, and computer geek. She's had work published in Parthenon West, Xantippe, Lodestar Quarterly, Poetry Flash, Two Lines, Cipactli, caesura, other, Literary Mama, Strange Horizons, and has been publishing zines and little books since 1986.
SJ Alexander lives in Seattle, avidly follows the doings of Britney Jean Spears, and is a Kennedy Administration buff. SJ writes almost daily at "I, Asshole" online.
Sarah M. Glover is a recovering C.P.A. who lives and writes in San Francisco. She is currently using her young children as guinea pigs while manically scribbling away about ghosts and fairies. Hopefully, the scribbling will make it into a book before they leave for college.
Michael Procopio lives in San Francisco, but has yet to figure out the precise name of his neighborhood. He is a food blogger who dislikes the word "blogger" almost as much as he does the words "moist," "classy," and "slacks." His likes include the drawings of Edward Gorey, Cotswold cheese, and the musical stylings of Jacques Brel. His websites are www.word-eater.blogspot.com, and www.kqed.org/weblog/food .
12 January, 2008
We're parked on the street so we could save the $10 parking fee. Normally I would just pay for the convenience, but a person came today to give us a bid on the backyard. Now I am in a big hurry to rustle up a bunch of cash so the backyard can be a safe, contained place for Jake to play.
10 January, 2008
Using a very large genome scan, the researchers also discovered that the genetic abnormalities—either a deletion or a duplication of a section of chromosome 16—were not directly inherited from either parent. Instead they developed spontaneously during the embryonic stage of development, possibly due to interplay of various genetic factors inherited from the parents.
Through the use of new and very costly chromosome micro-array tests, doctors can detect the abnormalities in autism patients and their parents and then predict the risk of recurrence in subsequent pregnancies. "We are beginning to develop a full understanding of the autism spectrum disorder genome which…ultimately will lead to the discovery of treatments that have the greatest promise," says Eric Lander, director of the Broad Institute of MIT and Harvard, which took part in the research.
We did so many genetic tests on Jake, I wonder if we already have this information on him? Will have to dig into his records.. they probably weren't looking at chromosome 16 then.
06 January, 2008
it was literally killing him to be nice.
You see.. I am not nice and I am not cute. I know these things about myself. I'm okay with it. I have tried being both, or one at various times in my life. For a few moments I might pass off either characteristic, but the truth is, I think it would really kill me if I had to be nice.
I think I am a decent person who does the right thing nearly all of the time, at least I try to. (I give blood, volunteer at the library and take stray dogs back to their owners). I also think I 'clean up good', that perhaps I have a more 'classic' look about me (think big ol' Renaissance art figures?!) but "cute" is just never a word that someone would use to describe me.
and nice? Yeah. Nope.
05 January, 2008
Have you submitted your story? email@example.com
We ate lunch there, which generally works very well for us.. but I forgot that on Saturdays there's "jazz" band in the foyer (which goes echoing up into the second floor glass ceiling area bouncing around and around!) oh yeah then there was a screaming little girl, AND a kid who opened the emergency exit door.. 'Cause there is nothing like all of those noises to make for a relaxing lunch.
Anywhooo, we survived and Little Lucy picked out her own bed. We skipped the toddler bed and went straight to a twin bed. Yikes! We actually went to a loft bed. It's white and pine and looks like an IKEA bed but ya' know what she LOVES it! We put it together in less than 2 hours! And tonight when we put Lucy in bed she just crawled on up to the pillow, put her little head down and waited for us to cover her up. She has not resurfaced yet. She was so happy.
I, on the other hand, had tears slipping down my face as we undid the crib.. ooops they are at the corners of my eyes again! My little baby...grown up already?!
On the way to IKEA Descartes and I had a conversation about storing the crib. Storing the crib?
Huh? Why do we need to store the crib if we aren't having any more kids?
Hmmmm? Hmmmmm? I wonder?
We recorded the debates tonight, so we are just starting them.. and as the program opened Diane Sawyer and George Stephanopoulos were talking about how hard it was for these candidates to get to this point, here I was thinking that they were going to talk about intelligence and savvy and what they were actually talking about was how little sleep the candidates have had in the past ten days.
Ten days with only 3-4 hours of sleep. Wow. Sounds pretty rough.
Good thing none of them are Jake's parents. Descartes and I once went over 50 days with a screaming Jake who couldn't rest his little body for more than 20 minutes at a time and could only scream between those small bouts of sleep.
Looks like running for president may be easier.. I laughed out loud and had to rewind and listen again.
I do not like Mitt Romney. Nice to know that at the very least, in my very uninformed state, I have consistently not appreciated what he has to offer the country.
04 January, 2008
- Sage had to borrow our house for bathing (hope it's okay that I shared Sage) because her house was not cooperating in the plumbing department... sand bags and a new sump pump probably mean she will not be bringing the kids over later for a bath.
- I made a home made chicken pot pie while the power was still on this morning..as it turns out we never lost power and the chicken pie fell into the category of "Uhm, you don't need to make that again honey."
- Jake went out the dog door during a very, very bad bout of rain (while I was changing my shirt..he's that fast). I had to chase him on the deck and bring his wet self back in. Oddly enough, even though we bathe him every single night he still smelled more like wet dog than our dogs do.
- I changed my shirt again.
- Lucy emptied the dog food all over the kitchen floor. Luckily it is dry food that had been placed in freshly washed bowls.. but I still think that CPS would not approve of "Chicken Soup for the Soul Adult Dog Food" as a healthy snack for children (again Jake is very quick).
- Lucy climbed over the side of her crib and came back upstairs refusing to take a nap.
- I got a migraine and threw up.
- While I was throwing up Lucy got a ball point pen off of the counter and drew all over part of her face (by accident I think.. she was trying to put the lid on and had the lid in her mouth.. hmm do you think she is copying mommy much?)
- While I was throwing up our larger Golden Retriever Chandler (he came with the name from Retriever Rescue.. and yes it is short for Chandler Bing) decided that he finally would deal with the rain and go outside to pee..only I had closed the gate so no one would escape anywhere while I was yakking...so instead.... oh yes, he did.. he PEED ALL OVER THE KITCHEN FLOOR! Do you have any idea how much liquid a golden retriever bladder can hold? Well it is enough to cover a 10x12 (or so) kitchen and the stairs that lead to the back door.
- I began to mop? wipe? hose down? saturate with spic and span? the kitchen floor.
- I paused and called Descartes to give him an update on where our family was for the day.
- Descartes came home in remarkable time considering that half of the streets in our town are flooded. He also picked up all of our recycling bins that had floated/been wind-gusted down the street.
- Descartes convinced Lucy to take a nap while Jake played quietly in his room so daddy could work and mommy could take a nap.
- I slept for 1 hour and 45 minutes..migraine gone.
- We fed the kids and did bath time..except Jake was in a pissy mood and decided to kick his sister so he went into the shower while Lucy took a bath.
- Jake refused to get out of the shower, and while I was dealing with him Lucy pooped in the tub. Fanfuckingtastic!
- Children eventually went to bed, tub got bleached and beers have been cracked.
Hope you had a nice day.
03 January, 2008
Squid saw another perspective entirely, which is that it is great news because now we know he doesn't have the hurdle of delayed myelin. She sees the possibility of more potential or something positive and hopeful. That's why it's good to have friends. When all I can see is the bottom of my half empty cup.. someone adds marshmallows.
We have just decided to hire someone to finish the patio and walkway project in the backyard.. not giving up.. we are still going to do the bathroom ourselves, just trying to respect our marriage and the very small amount of time we have. I would rather die with a little debt and stay married to my wonderful husband...than fight to the death about a stooopid backyard.
so if you know a good paver/brick layer type person who wants to give us a deep discount because we are such nice people (HA!)