25 June, 2010

Summertime and the Living is...

easy? hard? scattered.

Things are scattered. I think I have more time, but there are more children around, but Lucy has been at camp in the mornings, and at a play date nearly every afternoon, so really there are less, but Jake requires constant monitoring, so I am sort of trapped in the kitchen dining area of my house, or the back yard, so I can't get anything done. Oh, and I feel guilty for not playing with him or taking him any exciting places.

Everything seems to be breaking around here, so I've been running around buying parts, or taking things apart and looking at online schematics, and trying to figure out whether it is better to buy new or fix the old. I was able to fix the washing machine, which made me feel pretty awesome and also pretty annoyed that I spent more than $200 paying someone to fix the exact same problem when it broke last September. The dishwasher is no longer making that terrible noise after I took the entire thing apart and cleaned every tiny part of every tiny part. When someone says "They don't make 'em like they used to." I will now nod my head in absolute agreement.

I have a lot of goals for myself this summer, but I just can't seem to finish anything. Which leads me to one of my first goals of course... I need to let some things go, including giving myself a hard time about everything.

Here are some other things I am going to let go of this summer:
  • other emotional baggage
  • old cookbooks
  • ratty t-shirts, even if I think I should "keep them for painting"
  • baby toys, unless Jake really, really likes them
  • towels we have taken, almost always by accident, from Super8, the gym, and various hospitals. They are thin and nasty and never ever get soft.
  • paperwork that does not matter. Seriously, do I need all of those old phone bills? WTF?
  • clothing that does not look good on me
  • shoes that do not fit
  • beauty products that are past their expiration 
  • luggage that is beyond repair
  • cracked laundry baskets
  • pens that don't work
  • mugs I do not like
and that is just the beginning, but I am trying to make small goals and meet them rather than say "I will clean everything out of my house." That makes me feel defeated when I can't get it done.

I need our house and our life to make more sense than it does now. If it is this hard for me to accomplish great things here, I can't imagine how much harder it must be for Jake who has difficulty processing. He works so much better in an orderly environment, and I have more patience for sitting and teaching when our life isn't strewn about my field of vision. Lucy will benefit too, she is trying to figure out how to prioritize things in her world, and learning habits which will follow her for a long time.  If I can teach her now how to have a place for things, how to make order out of chaos, she will go farther and do more in life than I have.

Jake goes to summer school right after the 4th of July holiday, and Lucy has at least two more weeks of camp, so I will have some quiet sorting time when they are off being crazy kids, but it isn't too much longer until we need to prep for our cross-country trip. I have already begun the lists for that.

and by the way, making lists is a great way to avoid doing work. I am an expert.

18 June, 2010

Happy Happy

right before she makes a wish
She's four.
and she knows to keep gates and doors closed so her brother doesn't "get lost forever." She likes Dutch Babies for breakfast, and playing babies. And wow, she really is a great mother to all of those little plastic dollies. They listen to her and she puts them down for naps, and she rocks them and sings to them and teaches them life lessons.

oh my little bald baby
She loves the soundtrack to Glee Season 1, and understands why someone should not, but might still, "Bust the Windows" (Out Your Car.) We discuss these things on the way to school each morning, along with the prospect of seeing aliens, or at least talking with them using the Dish. I found out today that she can name all of the planets in our solar system, (although one of them is "Jupe-peh-per.").. and did you know that the sun is a star?

When she grows up she wants to be a Cut You Open Surgeon or a Baby Doctor (obstetrics, not pediatrics), or a dog walker. She is willing to go to college somewhere far away, but has every intention of living with us for the rest of her life.

lined up to sing at school
She knows the city she lives in, and can count to I don't even know how high, and add little numbers and crack eggs without getting any shells in the bowl, and she knows that two quarters make a half and two halves make 1 cup.

with her cousins Easter Sunday
She loves the colors pink and blue and purple, and has fallen in love with headbands and ponytails. She loves to dress up. She has worn her Easter dress at least three times a week since March. Thankfully, it's a machine-washable white dress with polka dots and pink tulle underneath and she wears it with tennis shoes. She has worn it gardening, shopping, cooking and to school for every single free-dress day.

sweaty little
party girl
She has no patience, unless you are sick, or frail, or elderly, or hurt, or small, or sad, or tired, or lonely. She knows we stop to help people in need, and we don't stare, we say hello. She has friends and she loves them deeply. Her family is very important to her, a constant topic of conversation, and she grasps easily the ideas of birth mothers, and the mothers that raise you, having more than one set of parents or a family with two mothers or two fathers. She is not bound by blood, she loves and is loved by the amazing community that has embraced us, and has the same sense we do about the friends who've become our family.

Very little gets in her way. She's not afraid of dirt, or the dark, or touching dead lizards. She can keep up with Tahoe boys, and she hikes in princess dresses. She gets emotional, hysterical, and when she can't find her way out of a tantrum she begs to be held, my arms somehow helping her put herself back together.

She loves to sing, and dance and run and only rarely does she blame her brother for incidents or accidents his disabilities could not possibly permit him to accomplish. She is sweet with her brother, but not condescending. Her praise for him, when he does something new or wonderful, is a genuine cheering-on. She almost always saves half her cookie to take home to him. She's sympathetic to his disabilities, but has no problem being upset with him for walking through her play area knocking things over.

She is fiercely independent with her need to do it all by herself constantly in conflict with my need to be on time. And though she sheds me at the gate of most activities, she is still the loviest, coziest hand-holding, creep-in-to-my-bed-at-dawn-to-cuddle,  little girl.
her perfect little hand holding mine
on the afternoon she was born

17 June, 2010

Right Now!

Everything I need to do needs to be done right now.

dinner, fix washing machine, write two essays, promote/market two things, get ready to leave the house, brush my hair, brush my teeth, pick up Shan.
ugh

ready
set
go

10 June, 2010

The Truth of the Matter

Jake usually has a hard time readjusting to life after anesthesia. I remember getting my tonsils out and crying and fighting with my parents for days afterward, my emotions a raging mess. There's a term for it: post-surgical depression, although the term seems to be used interchangeably whether you are discussing the depression after surgery, or the recovery from anesthesia. I suppose most people under general anesthesia are probably getting surgery, so perhaps people don't stop to figure out where the depression really comes from, is it the emotional release after a stressful event, or the medication itself, but back to my point.... Jake has a really hard time.

Once a year he goes under general so he can have routine dental care. It is not cheap, but it sure is effective, and the dentist and the anesthesiologist are both so wonderful, I can't imagine not going back to them each year.

The first time we went it was after I saw something red on Jake's tooth. Sadly it was a cracked tooth, half of it missing, and the one on the other side was cracked as well. And of course we have no idea when it happened or how, but we think it may have occurred from coming down hard on his chin and his top teeth banging down on the bottom during some fall he had at the end of that summer. After we found those cracked teeth they were extracted, or at least what was left of them was extracted; He also grinds his teeth terribly. Then we put spacers in, cleaned his teeth and sealed them.

Another year it meant replacing a spacer which had disappeared (did he swallow it?) and filling a cavity. This year it was simple, remove the spacer (one was gone already...again) and clean his teeth. No cavities, no spacers. His teeth are in great shape. I attribute this genetics mostly, but also to the minor but consistent work we do getting Jake more used to a toothbrush in his mouth (a tooth brush that is actually moving and not just being chewed on) both at school and at home. We also make sure he has water every night before bed, he eats a lot of crunchy, plaque clearing food, like apples, and he doesn't have sugary juices all day long. According to our dentist, it's not the amount of sugar you take in, but the duration that really gets the teeth. Eating a pound of gummy bears in one sitting is less damaging to your teeth than drinking from a sippy cup of juice all afternoon. Thank goodness, because I let him eat a pound of gummy bears just the other day.. kidding.

So the joy of no tooth problems has been slightly overshadowed now by the aftermath of the anesthesia. He spent all of Thursday, after the dental work in the early morning,  being groggy and unstable. You think that kid has ataxia on a regular day, add a touch of Versed to that cerebral palsy and see what happens. I could not be farther than 20 inches from him for most of the day. He was starving on Thursday too, after needing to skip breakfast, and we just never caught up on the calories. It seems like he ate or fell down all day long. More problematic was the "bad butt" Jake had Friday and Saturday. It's like his gut just rots, or perhaps we let him eat too much cereal when he begins to wake up, and that's what actually affects his system. Either way it is not pretty for a few days.

Then there is the crying. The crying with tears just kills me. Both of my children can whine and cry and scream and yell, but if they show actual, real, wet, watery tears, 99% of the time it actually means something. It usually means one of them is in severe pain. The most upsetting emotional outbursts are when Jake cries with tears but without an obvious injury. It breaks my heart; he just sobs and sobs, and the tears slip down his face. It sadder than the Native American in that Coca Cola commercial. (How old are you that you know what I am talking about? Ha!) And the crying seems to come out of the blue. And he can't tell me whether his emotions are just welling up and spilling over because of the anesthesia or if there is a new, sad, unknown-to-mom problem.

And then there's the not sleeping. But I'm not really complaining, because this type of not-sleeping does not include yelling (at least not all night) or self-injurious or me-injurious behavior. Last night, Jake's sleeplessness actually came complete with chuckles, snorts and guffaws.

He was laughing and laughing.. and it was, by this time, about 1:30am. He just would not stop laughing. I had already been downstairs several times, perhaps every 15 minutes or so I had visited his room, and changed his pajamas each time.

Why? Okay, here's the truth.

Jake wasn't just awake and laughing, he was also taking off his pajamas (and diaper) and PEEING everywhere. Well, not everywhere, but in little puddles, next to his bed, in the hall, onto his pajamas. He thought it was hilarious. Each time when I walked him to the bathroom he would laugh even harder and try to go back to bed.

This is a big deal and not because I needed to clean up a mess or six, but a big deal in a much more exciting way. And I'll admit this is where I like to take credit for noticing small victories in the face of adversity, but this little game he's playing means Jake is getting closer to toilet training. This peeing on the floor thing is very typical behavioral development for NT kids (at least some (most?) of the ones I've met.) We have a long way to go, but he is learning and using his body in new ways with different awareness. And yes this is part of what I was talking about in that post about shame, but we are going to get there with good structure and consistency..but hey... Jake can now take down his own pants when he wants to pee! That is a huge accomplishment for a boy who does not have pincer grasp, and has a variable grip. Hooray for new physical abilities!

****

He's down there again this evening wandering between the hall and his room and Lucy's room-- four and a half hours past his bedtime and I know he's awake. He occasionally drops toys over the gate, or more likely a sippy cup because he knows I will bring it back to him, and I can hear his feet slipping across the hardwood. And one of my favorite sounds,  his muffled happy squeal as he buries his head in the pillows and blankets. 

So then, back to it.

08 June, 2010

This Would Make A Great Reality Show

The premise: Without getting divorced, or running off the road, between June 3 - June 16, can you...
  • Plan three birthday parties for an almost four year old? Remember to include the guest list, the menu planning and any communication surrounding these parties.
  • Wash all the slipcovers and pillow covers from two couches?
  • Research, then buy, then install a room air conditioner?
  • Take apart the entire dishwasher, wash all of the pieces, make a repair and put it all back together and have it still run?
  • Butt your nose into the planning of your 20th high school reunion, send out a survey, then breathe a sigh of relief when the other organizers use the data you collected and take back over the planning?
  • Answer 40 emails about reunion any way?
  • Go to Costco three times and Safeway six times?
  • Break down all the cardboard that has been collecting at your house since January, get it in the car, drive it down the hill and leave it for pick up on the correct day/week of the month?
  • Work 18 hours a week at a "real job" with deadlines 6 days a week?
  • Cry over a dead router/modem?
  • Research, install, reinstall, call tech support, give up on tech support, then reinstall successfully a new modem/router?
  • Have your husband out of town for 6 out of 10 days?
  • Take your kid to swimming lessons?
  • Watch a sappy movie about a puppy with your nearly four old, because life is short and she will only be a kid this one time who wants to snuggle and watch sappy puppy movies?
  • Attend a benefit for a really great therapeutic riding ranch?
  • Launch an amazing new project "The Thinking Person's Guide to Autism"
  • Take your special needs son to the dentist where he undergoes anesthesia and subsequently must be watched for 8 hours so he doesn't fall down on his face.
  • Buy your birthday girl a new outfit for her birthday, lose it somewhere in the house and find it again in time for her party?
  • Forget that your special needs son who had dental work last Thursday is up all night, each night for at least a week after anesthesia, and cries easily?
  • Clean out your mini van?
  • Pick up the dry cleaning and wash all the black socks you can find in time for your husband to pack for his business trip?
  • Attend an end of the year party for room one at the preschool.
  • Clean out the refrigerator?
  • Prepare the house for five family members and their one elderly dog?
  • Remember to send a Father's Day Card to one of your dads who is traveling out of the country?
  • Put together any items you will need in August for a cross-country road trip on an RV?
  • Pay the bills?
  • Do all of the kids' paperwork for March, April and May?
  • Clean out your closet?
  • Drive to another city to pick up a prescription for your snk's narcotics, then drive to two pharmacies to get the prescription filled?
  • Feel like a failure because you can only see one way your daughter is going to be able to take cupcakes to school, and that's if Safeway makes them?
  • Order a sheet cake AND a Belle princess cake at Safeway while you're there, because if you are taking the easy way out you may as well make your life really easy?
  • Sleep at least 4 hours each night?
  • Drive without falling asleep each day?

01 June, 2010

Freeze Frame

My sister is a photographer, and this weekend we tried to take a family photo. I had kind of forgotten that we were going to do this, which is better because I couldn't freak out about what we were going to wear (hmm? what DID I pack for the kids besides jeans with holes and dirty tennis shoes?) But this is important to me; one of the things on my 40 x 40 list is to have a picture of my family that is worthy of putting on the wall. Taking a photo of our family is such a tricky thing, and so emotionally loaded for me. Jake won't look at the camera, Lucy, apparently, won't sit still during a photo shoot, I am never, ever, happy with the "weigh" I look, and Descartes has a life-long dislike of having his photo taken (which is odd to me, because he's very photogenic I think.)

Here is one of the pictures from the shoot.. it is untouched, because, why bother to fix such greatness?
my family attempts to be photographed


This photo clearly does not give my sister's work justice, so stop by her website Mandy Martyn Images and look at her other work, (the shots with more beautiful and compliant humans in them!)
http://mandymartynimages.com. She's really very good, so I think she managed to get several photos that have some potential, and I think I saw at least one I liked of me and the hubbins, which is something we rarely have, since one of us is always chasing Jake or Lucy.

[Not to be too obnoxious, but if you like what you see at Mandy Martyn Images, there is still time to vote for her! Best of Tahoe: http://tahoetribune.upickem.net/engine/YourSubmission.aspx?contestid=17288 ]
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