Kodachrome

Jake as a little guy at Disneyland late at night

We used to spend a LOT of money developing pictures. Capturing Jake on film required expert photography skills combined with the fastest shutter speed and endless rolls of film. It took money,  patience and diligence and perseverance, and faith, and will, and cooperation and effort.

so little

At some point I lost all of those things. and I began to let go of the idea of ever having a "real" family photo. I stopped trying to take a picture of Jake doing normal every day activities. I saved my strength for holiday photos.

Then we got a digital camera, a nice one.

and we started all over again. And we figured out that it wasn't just about the latest technology, or spending the most money, or getting leg cramps, or making sure Jake's shirt was clean.

preschool graduation day

We have a child with autism. We have a child with autism and cerebral palsy, and some panic issues and some migraine issues and some sleep issues and God only knows what else. And one of his "issues", or skills, or (dis)abilities, is avoiding a camera lens, or at the very least he won't tolerate a camera with a person behind it. The reason we had a hard time getting a good picture of Jake wasn't really about us not trying hard enough, or not caring enough, it was just a part of having this special needs kid.

Lucy was still being talked about in weeks in this photo

and I cannot help it, it makes me sad. I want to not want that "beautiful family in white cotton sitting in a field" photo.  I want to not really care that there seems nothing suitable to frame and give a grandparent as a gift at the holidays... or the looming Mother's Day. I want to not notice other families' adorned tabletops and hallways, lined with school photos, each one a masterpiece, a moment in time framed and hung for all to see the missing tooth, the self-styled bangs, the galliwampus shirt collar.

We don't really have those moments. My sister is a photographer by trade, my husband has captured amazing pictures, and many of the rest of the family are prolific in our clicking so as to produce at least some good shots if only by the grace of statistics...and still we cannot capture him. When we do get a shot, it is never with a straight on look. I just do not ever get to really look at my own son. Not since he was an infant, when, as irony often deposits itself into my life, my son demanded constant eye contact or he would fuss and fuss; he was so intense, and I would just stare at him for hours.

Jake at Dream Machines

What I would give for just one hour with those eyes again. I tried this weekend when we went to the Dream Machines event on the coast, to capture him, and his joy. I sat beneath him, next to his wheelchair (which we used for most of the day since there was so much walking and possibility of getting run over by, oh, I don't know, A Monster Truck).
I told him I wanted to take his picture and he started to laugh, and put his hands out in front of him, so I put myself to the side and just put the camera near him, which was funnier to him, but harder for him to avoid.

Jake thinks I am hilarious

I realized another thing as I was clicking furiously, knowing that I would need to delete 80 or 100 photos for every one I found that was worth viewing. I realized that Descartes' younger sister hates to be photographed, and Descartes doesn't really like it all that much either. This is foreign to me, since I grew up in a family of narcissists (and I say that in the nicest way, my dear siblings). I don't remember ever being shy for a camera unless I was in a bathing suit, or wearing the fat suit of adulthood. We hammed it up, and leapt in front of each other and put on tin foil hats or dramatic big, poofy, curled hair just to be seen.

So perhaps there's another dynamic I hadn't thought of before, one that isn't so tragic and dramatic. Perhaps Jake just doesn't want his picture taken and is being a pain in the but like any kid who doesn't want to make a nice smile or stand still or wipe their face for a photo. Maybe he is just different than Lucy in a very normal way. She is a dancer, an orator; she poses, and waits for the shot. Maybe it's okay that he watches, and laughs, but keeps his distance from center stage.

I'm Just Doin' My Job

Lucy is growing up very quickly; filled with opinions and self-direction that is not always in line with my needs.

Last night Lucy was being a pistol, bickering about everything. It felt like it was one tantrum after another. I sent her to her room, and sighed heavily to my son's aide.

Mentally exhausted, I went back to making home made meat balls, and dough for calzone. [see? we don't eat junk food *all* the time.]

Lucy yelled a bit more, and I told her from down the hall, that no one was going to speak to her until she used a kind voice.

Her response? "Mother,  you are being hateful and mean!"

The aide told me, "When they say things like that, that's when you know you're doing your job."

I responded with pride, "I KNOW. She just said that with the nicest tone."

Kid Snippets

a call from Jake's school yesterday:
"Uhm, we couldn't find Jake's notebook."
This is because I'm a flake and couldn't find it after a week of spring break. Couple that with my trip to New Orleans, and that pretty much means I sent my non-verbal son back to school to explain his week of break, on his own. Smooth. Very smooth parenting. Gah.

"We are wondering if everything is okay. He seems really hungry."
Initial panic, easily put to rest by laughter, because my son goes through phases where he eats everything in sight from 9am-3pm then nothing in the evening, or nothing all day, then has an 18 course dinner. He must be in his day phase. He's fine. He must be going through a growth spurt...again, which means I need to buy 5 more pairs of pants in the next size.

"No, I mean he's really, really hungry."
Mild panic again: do they think I don't feed him? Does he have a tapeworm? Of course he has a tapeworm, because that is exactly what we need in our family right now is to deal with a tapeworm.

"He ate half a bag of pretzels."
Phew. Nothing wrong there. Unless they mean one of those Costco-sized bags, but I think they'd be more specific right? RIGHT?

I end the call with the promise that I will replenish the cupboards at school, and a request that they please let the boy eat whatever he needs.

******

this morning in the Not-so-Mini Van:

"Mom, why did you make that frustrated sound?"

Okay good, she still doesn't recognize swearing, or maybe that time I actually didn't swear. Sh*t. I really need to watch my damn mouth. Sh*t. Sh*t.

"Mom, who made you frustrated?"

Oh, I am so tempted to call out her father, her precious 'I love my daddy more than I love my mommy' father, because he seriously left me with a car that is not 'a bit low' on gas. The damn car, after moving 15 feet from the driveway, has a little orange light on that is saying: 'Ha Ha! I know you have no credit card and no ATM card, and you spent your last dollars buying gas for your husband's car yesterday because you didn't want to leave him with a car with no gas in it. Ha hahahahahahah! You have no money, and no gasoline.'

"Well, Lucy. I just want you to know, that when you use someone's car you should always make sure that you fill up the tank, or at least make sure they have enough to get them where they need to go."

"Is that why Daddy gave you monies? Did he forget to put gas in the car mom? Is the engine going to stop working mom? Can we still get donuts?"

Sh*t that girl is SMRT. Remind me not to have any conversations in front of her ever again. Sh*t. STOP SWEARING jennyalice! Oh good this is only in my head.

"Lucy, calm down, we are fine and there's time for donuts and we will not run out of gas.

Because, thank God! there's a gas station nearby.

"We're all good Lucy.

*****

Frustration

• I was pick pocketed in New Orleans this past weekend. Awesome. (p.s. New Orleans, you were a lot of fun and I am never going to see you, and your hustling inhabitants ever again...adieu.)
• I am supposed to get registered (and fingerprinted) for the state to prove I am who I am, so I can be my son's home health care worker. 
• I have had this job since he was born, and with that particular title for more than three years. This is the first time they have wanted to check my id.
• I was randomly assigned this month (April) to provide documentation.
• Two of the weeks of April I had a child on spring break.
• I must attend a 2.5 hour "training" and provide my documentation at this training.
• There is no childcare available at the trainings. My childcare provider that was supposed to be around during those spring breaks has run off to another country.
• Half the mandatory trainings are held in Spanish only, and I am not fluent.
• The last English training for the month that is during a time that I am not in charge of my children is today.
• The first DMV appointment I can get to obtain a new driver license is June 3, 2010 at 9:45am.
• I cannot find my passport at home. Sadly, I believe it is in my safe deposit box (do not ever do this!) and I need, ahem, ID to get into my safe deposit box.
• To get a new passport...if indeed it is lost... I will need a copy of my birth certificate.
• To get a copy of MY birth certificate I will need to appear in person, with a state issued ID... in an office over 500 miles away.

I am going to curl up in a ball now.

King of the Road

So I am on my own at the airport. I've had my bloody mary and my espresso and the somehow necessary, bar stool conversation that bored me to tears, and the other that made me want to trade business cards. I made sure the lady in the wheelchair hadn't been abandoned, and now I just need to wait for my flight to board.

It was so easy to get through security. It surprises me that single people can take so long when we have near perfected, after many errors, the art of getting through security with a kid with disabilities, then we added Lucy!  I realize as I go through the checkpoint, then sit here or there, just by looking, no one knows I have a special needs kid.

I move through much of my life now with people who know my story, and my child, my children, my SEPTAR, my advocacy is such a part of who I am, I am surprised that people don't just know all about me. I think there is some sort of mantle upon me, but for most people I am just a blonde woman wearing jeans.

And when I casually use the words CP or Autism, I am taken aback by the "oh I'm so sorry" and "wow. You're a great mom." Most people don't have a special needs kid, not even a special needs cousin. In my world, it's surprising when things go right, but for most people, my world is really foreign, and possibly scary, and certainly not part of a casual conversation.

You Gotta Know When to Hold 'em

Shannon posted today at BlogHer talking about the dissolution of the dynamic "Green the Vaccine" duo Jim Carrey and Jenny McCarthy. I am totally with Shannon, that while I am not on board with most anything Jenny McCarthy and her movement spout, I have no desire for any ill-will to befall either of them, (or really any person who is anti-vaccine, or really anyone for that matter). 

Shan's focus was more on the myth surrounding the divorce rate in families with special needs children; some say it is as high as 80%. Mull that one over eh?


She interviewed me for the post, and used an excerpt of my response to her query:


1) Are your child's special needs a factor in the state of your marriage?

2) for better or for worse?


and my answer is...

****

Yes, and while I feel that children change the direction of any marriage, having a special needs child changes the direction of everything in your life, and often.

I feel lucky because I got to figure out really early on that I married the right man, and that I want this marriage to last my lifetime. We have learned how to be a team, how to give each other space, how to argue while still taking care of some pretty big or stinky jobs.

I do think marriage is harder when you have a special needs kid. Just finding a babysitter to go to therapy can feel insurmountable, and where is the money for date night supposed to come from when all of your dollars seem to be going towards therapy or special shoes, or another stroller that's even bigger because your kid still can't walk? Everything is just a little bit harder, fixing dinner, bath time, childcare, hours you keep at the office versus home; having a special needs kid impacts the choices you make in every category of your life, it's not like "marriage" could really stand outside of that.

And all of these marriages with typical kids that end in divorce? Sometimes I get angry... sort of like "wait a minute you have everything going for you there: health, and typical kids, and no short bus, no 2+ hour IEPs and no wondering whether you are going to drive off the road because you're so tired because your kid has epic migraines and hasn't slept in days." I think, "Why is it that we are making this work, and you can't with your simple, easy, carefree life?" And I know that's not completely fair, because every relationship has its moments, it just seems we have a lot of things working against us, and we are still here, together.

So it occurs to me that maybe that's why we're still here, or at least part of the reason, aside from really having liked each other to begin with. Maybe having a special needs kid has cemented our relationship, in ways that only despair, coupled with a deep abiding love for our child, could possibly do.

We have learned how to move through adversity, together, and we share the same dark, dark, humor, and we have remembered to laugh. We have figured out, on our worst days, how to still be good roommates, because we have children to raise, and an example to set for them.

I don't necessarily recommend adding a special needs child to a marriage to strengthen it, I'm not thinking it works that way, but for me, for us, we're going to be just fine; place your bets.

Frozy Toes

We just had a great Easter weekend in Tahoe with my sister and her family. So many things went right. Yes, I said so many things went right.

I think that's how travel is for most people. They just pack their bags and get into the car, or get on the plane, then they check in or knock on the door and then they put down their bags and they enjoy their vacation.

I'm not about to complain about going to Tahoe, don't worry. I already now how lucky we are to have a home there filled with supportive and loving family.. who let us stay there for free (or maybe for a case of Two Buck Chuck). It's just that travel is so difficult sometimes that it makes us want to go back home, lock the doors and have groceries delivered.

Lucy and I went up on Thursday night, so we would be there in time for me to sing with my sister at the Good Friday Tenebrae service. I think it's the first time I've made it in time to practice and be able to sing with her at church. I love singing with her, so it was very special for me.

Lucy and I had such a nice drive. We stopped and ate inside In N Out burger, something she always wants to do and never gets to, since it is often easier for our family to keep driving while I feed kids in the back. She had great table manners and we really enjoyed each other's company. We talked for most of the car ride up.

Descartes brought Jake up after school on Friday, and despite a very big storm, made it in time to put sleepy Jake with the babysitter and still get a chance to go for a drink at a new-ish wine bar.

Saturday we took the kids sledding. Jake didn't last in the sled even to get across the expanse of flat between the car and the hill. The powder was deep, and when he dove off of the sled we were pulling we let him stay there, playing in the snow. I stayed with him for a bit, then Descartes while the other one of us helped Jaster and Demanda with the sledding. Then I heard Descartes holler for me.

Jake lost a shoe. Lost a shoe? Lost a shoe. And of course this was the one time we had left the house without an extra pair of shoes for him. His snow boots had already been left at home, home 4 hours away, so we were pushing it with his tennis shoes. And it's not like Jake is going to tell us where he lost the shoe. Descartes carried him back to the car so Jake could heat up his frozy toes.

It was fine. Jake and I played in the car while the little kids finished sledding, and because they are little and every hill is a mountain, it wasn't too long before the whole gang was back to the car.

I'm not sure I've mentioned it yet, but we are headed on a cross-country trip this summer. We will be flying to the East coast, where we will meet Oma and Papa and their RV (which they will have driven across the country). I am going to the BlogHer '10 conference in New York that first weekend, then Descartes, and the kids, and the grandparents will pick me up at a train station in a state I've never been to (Pennsylvania?) with the RV with a car in tow. I will be detailing the trip later, but basically we spend a few days with my in-laws then drive the rest of the trip across the country with our little precious children, blisfully taking in National Parks and quiet streams and fabulous diners etc.

Except I just started to worry a little bit. The shoe thing got me thinking. I know if we forget anything we are probably going to be able to afford to buy it along the way, and there is an entire RV for Jack to hang out in if we lose a shoe, but what else will happen? I'm starting to get little butterflies about the whole thing. Detailed checklists will begin shortly.

*****

We will probably be blogging (Descartes is going to go all "bloggity blog!") the entire trip, and we will complete some of the same route that Descartes took with his family more than 20 years ago. It should be neat to take photos and take notes of the same places so many years later.

So Much Time

I made Lucy her favorite dinner the other night...Dutch Baby. Perhaps I will put our recipe here if you really want. Basically it is a thick pancake that fluffs up when it bakes in the oven, then sinks when it emerges (like a souffle). When it's ready we slice it like a pizza and throw a bit of powdered sugar on it. She loves it and I can recognize all of the ingredients in it, so I will make it for her just about whenever she asks.

It is so quick to make, and since I popped it into the toaster oven, it cooks even faster. I still set a timer to make sure I don't forget about it. If it puffs too high it will hit the top coils and burn in quite a nasty way resulting in a sad kid and a messy oven. (Image from Instructables. I could have said it was my photo, but my oven is WAAAAAY dirtier than that!)

When I set the timer for 12 minutes I went about my way in the kitchen, cleaned up the counter where Jake had eaten dinner, opened up some root chips and introduced 5 flavors of odd root to Lucy, put away the last groceries, and tidied the silverware  drawer.

It looked like the pancake should come out, so I took it out, sliced it up, powdered it, set up a little tray table for Lucy who very nicely asked to eat "on the couch under a blanket to be cozy." So I hooked her up and went on to line up the disaster prone plastic container nightmare in the bottom drawer next to the sink. Next I checked Tweetdeck, then went to wash my hands because they felt sticky, and as I dried off my hands...the timer beeped.

I had done all of those things in 12 minutes; and those are just the things I remember.

I always think everything takes so much time, actually, it's more like I have a sense of time that is not quite like most people. I am constantly calculating all day long, how much each action will take

I think unloading the dishwasher takes 15 minutes or more; it takes 7 at the most.

I think it takes 11 minutes to get Lucy from our kitchen to her preschool door. If you only counted actual drive time, I'd be close, but the race to the car with the inevitable falling down or forgetting something, plus the chit chat as we get out of our car at the other end makes this task at least 20 minutes, and it's really more like 25, and by the time I say hullo/goodbye to other parents it is nearly 50 minutes before I'm back at my door.

I know that it takes 3 1/2 minutes, at the most, to get to Sage's house, and it can be done faster if my son has a three inch nail in his foot and she is taking Lucy for a bit whilst we take a jaunt to the Emergency room. It takes 5 minutes to get to the closest emergency room if you drive the speed limit.
Depending on traffic it is 9 1/2-10 1/2 minutes to get to Squid's house. but I should drive slower than I do around those corners. It is 13 minutes to get to Pollyanna's and 29 minutes, at least, to get to BQ's house. It takes forever to get to Orange County from this side of the bay, and Tahoe is 3 hours 35 at 4:30 am and 5 hours 50 minutes if you leave at 4:30 pm.

Somehow, it takes nearly 4 minutes to get from the back of the house to the front of the house where we put Jake on the bus.

It takes 52 minutes to get to Safeway, buy a small bunch of groceries (if there's a list), pay for the groceries and drive home.

It takes 10 seconds for my husband to set my day off right by kissing me goodbye when he leaves for work.

A post for this blog may only take 10 minutes to write, but could take up to 3 months for me to decide to hit publish.

I Love Cats!

I woke up this morning, and the first thing I thought of was CATS! Lucy loves kittens and I think we are going to head on over to the pet store today and get a cat, in fact we may get two cats!

I'm going to put a cat scratch post next to my bed. I've seen one with little jingle bells that tinkle tinkle as the cat walks up a ramp, and won't that be a delightful sound to go to sleep to. OR I could get one of those awesome novelty cat beds.

So that's our plan for today.  We are so excited.

Hey did you hear that Jenny McCarthy has a new program? Check out Squid's blog for more details.