Ten, Ten, Ten

When my brother Gerard was little, and learning to count, he and my dad would slowly count together. One to five would be drawn out and slow, six and seven even-paced, but right about eight, and certainly after nine, they would make a sudden race for ten, and together they would nearly shout "Ten! Ten! Ten!"

and that is just how I am feeling as this day rolls around, and my first child, the boy who made me a mother is ten. Ten. Ten!

It's cliche to say it all goes by too fast, and in our case I don't think it's always true. Some days, even a year can fly by, but other moments are so weighted with importance, or joy, they seem to be almost outside of space and time.

He went on his first road trip when he was three weeks old, to go to my cousin's wedding. He slept on a wing chair, wrapped up like a little burrito.

He is getting tall these days, taller than his dad was at that age I think, and though he has puppy feet, nearly too big for his body, his movements are smoother as he gains more control, and more awareness of his limbs. 

He ate an entire papaya and chicken quesadilla at the Mai Tai bar in Oahu when he was only ten months old. Later that year, the chef came out to see the baby who was eating the wasabi mashed potatoes at the Four Seasons in San Francisco.


He has a great sense of humor, and a laugh that is infectious. My favorite is when he giggles so hard that he has to take a big breath. He stands still to let his little sister tickle him, and will come over to the couch for a family tickle match.

The first time he held his own cup and took a drink, we were at an Indian food restaurant and he was more than two years old. 

He moves so quickly it's hard to believe doctors thought he'd never walk, and he loves to test adults by pretending to meander before he breaks into a full run towards any exit that has been left open.

He took his first steps across our living room while he was yelling something at us. We couldn't understand him and he was so frustrated he got distracted and walked seven steps. 


He likes to be outdoors. I think he would be happiest on 40 acres; a place with a grove of shimmering trees, and a small brook with pebbles lining its banks. His love of nature inspired our AdventureVan purchase, and his love of the AdventureVan inspired our cross country journey this summer. He is a road-trip, roadside diner, let's-just-pull-over-here-for-the-night type of kid; his flexibility amazes me.

He went to sleep-away camp for the first time the summer he was five. As we drove away and watched as he ran off smiling and laughing down a leaf strewn hill forcing his counselor to chase him. 

He's showing an interest in technology, gently touching the screens at home on devices, and using the mouse at school to get through stories he likes on the computer. I love the sibling dynamic as he tries to grab the iPad or iPod from his sister and laughs as she shrieks to keep her hold.

He got into the car by himself last week, no physical prompts at all, and when we went home he went in through the gate without holding hands, and without running away.

He is affectionate, and more and more often he leans in to show his desire to be near you. His wordless gestures teach me that my body language, my movements, the spirit I carry through my home is often more influential than my words.

He got out of bed when I passed by his room tonight. He gently touched my arm before he turned and ran back to his bed. He buried himself in the pillows laughing.

******

Happy Birthday sweet boy.

I Feel Hopeful

When I was younger, it never occurred to me that my life would be anything but better the next day. As much as I was a pragmatic young adult, choosing to work instead of take that Europe trip, taking the solid job in front of me rather than risk for anything else, somehow I was still the optimist. I always thought that if a bad thing happened, I was supposed to learn from it and move on, and never experience that kind of pain or disappointment again, because I had already learned that lesson. I didn't think you had to live through bad things more than once.

I did not fully prepare for things like financial stress, career disappointment (mine or my spouse's), or losing best friends. My heart could not fathom the disability, or dead babies we have met along the way, which perhaps is better because I think some things are just too big and too sad to prepare for. It's better to be hopeful, and encounter pain, than to wait and anticipate hurt. My heart is a little bit achy today, and not because of any particular tragedy in my own life, but in the lives around me. So instead of mourning their losses, or taking on their worries, I was thinking this morning about smells, and sights and sounds that make me feel hopeful, like the world is still filled with promise and good fortune and possibility. 

• stacks of lumber
• cooking stores with rows of pots and pans and little tiny dishes for specific things
• ribbon
• dawn
• finishing a book
• new lipstick
• the first rain on oil soaked streets, and the bright green of leaves that have just been washed for the first time all summer
• getting off a plane and having the weather be completely different from the weather I left.
• pens that work without shaking them or holding them at the correct angle
• when my husband sends me a recipe he thinks we should try
• IEPs that go well
• singing in the shower
• realizing that I am singing in the shower
• watching my daughter sing, and make up her own songs
• the smell of onions cooking on the stove in olive oil
• shoe polish
• painters tape

I need to take Lucy to school, but I think I may add to this list later

A Metaphor I'd Rather Live Without

*written Thursday night*

There is a mouse in my house.

a mouse.

in my house.

and you know what? I am SO GLAD THERE'S a MOUSE IN MY HOUSE,

because at least it's not a rat.

okay first of all, before you think I am a loon, there's really only one little mouse and it is very tiny of the field variety.

Here's the thing. I've heard that bugger trying to get into my kitchen for the last week.  We have an older house and an empty field, and apparently when they built this house they didn't really make it mouse-proof on the east side. Actually, we had a problem once before several years ago, and I sealed up all the holes, took fine mesh and stapled it across all mousie highways, but this one skinny little thing managed to get into the space under the kitchen cabinets and could not find its way out.

So I knew that that sound, whatever was behind that little wall, that creature couldn't get in to my house because it is sealed to make it into the kitchen. Over the course of the last week, each night, that sound got louder, and in my mind, the mouse grew bigger. It grew to be rat sized, it became a giant rat, then a terrifying oversized rat, and finally tonight, I was quite certain some miniature chupacabra was behind the cupboard, stalking my family, walking on the edge of the foundation, scratching the wall. The sound has haunted my sleep, made it hard to work, and occupied my mind nearly all day with me trying to figure out just what to do next to get rid of the giant beast behind the cupboard.

Well, that giant beast eeked its way somehow through the tiniest of openings, and just made a run for it down our hall and into the closet. There's a mouse in my house. a tiny little mouse.

Ha HA! It's just a little tiny mouse! Nothing to fear at all. Manageable! Quickly taken care of!
I set out two glue traps (go ahead, call PETA), and I have a broom next to me as I work, and tomorrow the mouse will be gone, and I will patch up any little holes in our defense system, and it will be taken care of.

and so.

and so that's it. There's no rat in the cupboards. There's no infestation or disaster, and it wasn't chupacabra, or a giant rat, it's a field mouse.

That's what I do to myself all the time...about everything. I build up a small, easily accomplished task, until it becomes so big that it occupies most of my active brain power, and I become immobilized  by the weight of what I need to do.

Then things pile up, physically, emotionally. The stack of mail, the unfinished writing, the clothes that the kids have outgrown, looming. And of course, there are all those things "on my list" I should do for my children, and for my husband, and maybe even for myself. They are little things mostly, which are reasonable, feasible, and within my range of abilities, like paying the car registration, and emptying Lucy's suitcase from her last little overnight, and taking the pile of shirts in my trunk to the dry cleaner.

If I could just tackle one, or three, things at a time I can take care of all those mice. And if there are too many, I should be able to ask for someone to help me without feeling like a complete loser. More importantly, I need to remember that a mouse can never turn into a rat (though there may indeed be a few rats that just start out that way.) I can manage nearly everything I encounter in our little life here, if I just address the situation, right when I should, in the moment.

ready?
answer that email | return the call | write the check | rsvp | clean it up | throw it out | donate it | repair it | tie it off | paint it| return it | bag it up | wipe it down | write it down | look it up | compare it | be grateful | reach out | stand up | lead | nail it to the wall | follow graciously | speak up | wrap it up | listen | put it away | ask | plan it | mend it | try it | polish it | fold it | put it away | make room for it | research it | read it | scrub it | make it fit | give it up | fluff it up | keep it up |

then rest

Acceptance

the kids four years ago August 2006

The Goodnight show is teaching the word "sibling" this evening.

myGirl: Oh! I can call my brother my sibling!

Daddy: Yep. You're very smart sweetheart.

'Nina' on television: Do you go to school with one of your siblings? That can be fun!

myGirl (to the television people): Nope. I do not go to the same school as my sibling.

myGirl (excitedly, to her dad): Hey, when I grow up and I have autism like Jake, we can go to the SAME SCHOOL!"

Daddy: Oh sweetheart, you aren't going to have autism when you're older.

myGirl (slightly deflated, then with building enthusiasm): Oh...well, that's okay. When I grow up, my girl will have autism, and SHE can go to the same school as Jake!"

Daddy: You mean your daughter?

myGirl: Yes, my daughter will have autism, and SHE can go to that school!

Grateful

• In 'n Out Burger opened up in our town (mixed blessing!)
• I was able to change out the DVR with no problems... a tele that cannot be paused is just not a part of my daughter's understanding of the world.
• my children are so happy at school.
• every phone call I've had in the last 24 hours has been from someone I am happy to hear from.
• we are going camping this weekend.
• the plane that crashed 300 yards from my husband in the lagoon near his office, crashed 300 yards away from him, not any closer.
• my son really wants to play on the iPod touch. I think we may have a winner here.
• both of my children are asleep, and so is my husband.. I've checked on each of them.
• the campground my hubbins chose for this weekend is a 10/10 in the California camping book.
• I have really interesting, smart friends. I can spend hours at a time talking with most any one of them, and still want more time sharing stories. 
• After 4000 miles on the road, my husband and I can't wait to get in the car again with our kids and drive across the state for some quality outdoor time.

I have a great life, really I do. And, as I sit here with Mama Mia in the background.. I am also very grateful that my precious husband can sing so much better than Pierce Brosnan.  In fact, whenever Cris Daughtry comes on the radio, Lucy asks me to turn it up so she can hear "daddy."

It will be fall.. NOW

Jake is downstairs whooping and hollering, happily. Lucy is asleep in the guest room, having convinced herself that she sleeps better there. Descartes and I have taken up our places on our respective couches, laptops in laps, remote controls within reach. The beer is cold, the night is warm and we are safely snuggled back into our fall routines.

Even though the temperature hit nearly 100F in my backyard this afternoon it could not dissuade me from making home made sugar cookies and some royal icing so Lucy and her girlfriends could cut out shapes and decorate them as part of their afternoon play date. I put a ham in the oven. I contemplated the split pea soup I would make.

Jake's birthday is a month away, which means his IEP is in a couple of weeks. Which means sign ups for the amazing respite weekend camp he goes to must be soon. Then there will be Oktoberfest and Halloween, and Thanksgiving and Christmas, and while I will miss the music in the parks, a summer staple in our town, I am looking forward to back-to-school nights, and a new year of the Special Ed PTA, and the calm that will come after the weather cools and the rain comes.

I think I like fall the best. Perhaps it's because I still anticipate a new school year as if it were my own accomplishments that will transpire, and I have always been great at starting school years. It's a sort of rebirth, tabula rasa, the blank notebooks, the sharp pencils, and all those new school clothes. [here's where I would insert a picture of me wearing an Esprit color-block sweater made of scratchy wool with green corduroy pants...a photo from 7th grade when I used nearly all of my back-to-school clothing budget on one outfit because I loved it so very much. My father, a psychologist, let me experience this fully...coming home with only one beautiful esprit bag and a few basics, like socks, underwear and white tennis shoes. Later he felt badly for me and bought me a 3/4 length butter-yellow down coat to add to my wardrobe. It should be noted here that I grew up in Orange County, where the average temperature in the winter months is never lower than about 65. I was able to wear the sweater/cords outfit one time in sunny Orange County, but did wear the set in Germany in October. It never stopped itching me.]

The kids are happy in their classes. Jake's class is mostly the same, with a few minor staff changes. He fell in love with a new aide to the class, and when I met her the other day I could guess why, with her pleasant demeanor and beautiful smile. Every time I step on the campus at WunderSkool I get a little teary-eyed. The people there are so friendly and they genuinely seem to like their jobs, and their jobs are our kids. Every day I feel like Jake is cared for and learning.We are doing some new things with "talkers", and we tried out an iPad last week. He was very interested. Tonight he broke into his sister's room to sneak the iPod Touch from her, or at least see what she was playing. He seems to be more interactive in so many ways lately. He is less frustrated, maybe because he knows we're listening and we believe in him.

Lucy was so excited about going in to Room Two that she could barely contain herself on Monday. They call it pre-k, and while there's no algebra yet she does have homework sheets. We're learning together how and when we sit down for school work. When I started to get frustrated with her "I know Mom. I KNOW." attitude I took a deep breath, and remembered to be grateful for all of her words even if she was sassy. We'll get there, but she is hard on herself, and I had to talk to her about the difference between finishing first and being (or doing)  the best. First is always better in her book, and I can tell she rushes through everything. In the three days she's been there, she has already stopped scribbling everything in, and is paying attention to whether she's supposed to write a lower-case or an upper-case letter.

I am getting back into my groove too. I walked the Stanfurd dish walk the other day, which is probably no big whoop for most of y'all, but spending 1:50 minutes in a row without my children, focused on me and my health? That hasn't happened in a very long time. We also had a very productive meeting for The Thinking Person's Guide to Autism. I'm so excited that this project is going so well. We have really collected a great bunch of information from parents and professionals and adults with autism.

**********

post script: it is now 1:18 am. Lucy is next to me on the couch, unable to sleep. We are watching "Gulah Gullah Island". Not my favorite, but I figured she shouldn't be watching "Blindness."

Who's Your Teacher?

This morning I was talking with my friend Pollyanna. We've known each other since our first kids were babies. Jake was less than 6 months old and her daughter was nearly 2 months old. I had specifically chosen a playgroup of first time moms with babies who were younger than Jake. I knew already that something was different about my son, and the longer we could "look normal" while I figured out what was wrong, the better. Of course the playgroup was all girls, and they all passed him by in a matter of months, but by that time I had somehow managed to rope in a few women to be my friends, in spite of my different, but beautiful boy. While I don't see all of those women now, I know that in addition to Pollyanna, I could probably call at least two of them right now and they would help me if they could. It was, for the most part, a great group of people.

So, of course our first children are all the same age, and should be going into the same grades, etc. When I was talking with Pollyanna, I had to ask what grade her daughter was going into. Perhaps if I were a better friend, I would know these things, but mostly, I realized, I should know because my son should be going into the same grade, or it should be close, maybe he should be in the grade above hers. I should be at least as accurate as to be within 2 years...and I had no idea; just couldn't come up with it without asking, or starting to do some math, or counting all of Jake's teachers, which would just put me in a dark place because I am still not over kindergarten.

And while my conversation was such a nice welcome home after so many days away from my community, my tribe, after I hung up I was melancholy. A piece of my heart, in spite of being so full of joy it could burst, was sad. This has nothing to do with Pollyanna, or either of her beautiful, talented children... in fact I should celebrate the problem I have... I will never need to worry about what grade Jake is going into ever again; as long as he stays at WunderSkool, it will never matter. He may change classrooms, and certainly, at eighteen or so he will switch to the adult program, but as long as he is a part of that program, it just won't matter. All that matters there is his development, his needs, his growth, his happiness; the things that are important.

So why the frowny face jennyalice?

Markers, milestones, certification, progress checks... they are those bits of childhood that made our parents proud, or got us grounded. The little slips of paper in the mail from the state, "Your child is gifted." or "Your child meets the state standards for reading." There was the "N" for "needs improvement" I received erroneously in second grade, right before spring break, which made me lose my sh*t so badly that I cried all the way home on the bus (having looked at my report card even though you weren't supposed to look at it before your parents did...). That little "N" made me so upset that my dad, who was somehow home, and not at work, drove me back to school so he could speak with my teacher who thankfully was still there. Those report cards, checking the list on the wall the week before school started to see who your teacher would be, the anticipation of a new desk...shopping for school supplies and back-to-school fashionable clothing purchases... I don't really need to worry about any of that for Jake. None of it.

I buy clothes in the fall because he normally has grown so much over the summer it's a necessity. I clean out his backpack and lunch box, because they are filthy, but he's been using the same backpack and lunch box since I put him on that little yellow short bus 7 years ago. He will go to the same classroom, at the same school, for a very long time, and he can't even tell me if he has apprehension about the one new thing he'll have tomorrow... the bus driver.

I'm not grieving really. I'm not feeling all that left out. I just noticed. I noticed that we are different at our house, again. Even in the simplest ways, our house will continue to run differently than other houses with kids the same age. And while we will go through many of these little things with Jake's little sister, we aren't racing to Target today to get Jake a pencil case, and some wide-ruled paper.

This is My Country

I'm having such a great time on our trip. It's really amazing to me how diverse the land...and the people are in this great country. I may be liberal, but the conservatives can't steal my love of country or my ability to display the flag at my house, though you probably won't finding me with a flag lapel pin any time soon. I love this country, and my heart swells with pride when I think about how lucky I am to have been born here, and had the ability to have an education, and marry the person I wanted to marry. Knowing I can raise my children with clean water, and an abundance of food,  instilling our family's take on religion without persecution. And we can travel freely from place to place, without fear. It is truly a privilege to live here.

Visiting Washington, D.C., looking at all of the monuments to some of the greatest community builders the world has ever seen, makes me weepy. Our first President, George Washington, leading a group of disparate people in unity to help build our country. Abraham Lincoln, who held the country together, when slavery, and economics nearly shredded the fabric of the new nation beyond repair. Franklin Delano Roosevelt, seeing clearly that each person had value, and as a society we have a moral obligation to take care of each other, a concept that presses upon me as a parent of a special needs child who will always be on the receiving end of society's beneficence.

The amount of leadership and personal integrity those people must have displayed is astounding. I've already mentioned how moved I was by the John Adams series, and the personality traits it brought to light for us all these years later. I think anytime I see great leadership, or community building I am moved. BlogHer'10 gave me some great moments, especially watching Lisa Stone, an amazing community builder herself,  interview the the International Activist Blogger Scholarship recipients.

The speakers:

Dushiyanthini Kanagasabapathipillai, Sri Lanka, publisher of Humanity Ashore
Esra'a Al Shafei, Bahrain, publisher at www.mideastyouth.com
Freshta Basij-Rasikh, Afghanistan, writer for the Afghan Women's Writing Project
Marie Trigona, Argentina, publisher of Latin American Activism

I was especially excited to hear Esr'a Al Shafei speak with such passion. I think my favorite quote was. "If you're going to piss a lot of people off you better do it very well." Which is exactly what the founding framers of this great nation did when they cleaved our future nation from the Crown.

myBoy at the FDR memorial in Washington, D.C.

It was an honor to hear those women speak, and a great feeling to be a part of BlogHer. I've met many wonderful women, who are now part of my community, my little world of Special Needs, and the advocacy and activism that come with it. 

And while I'm not saying that the International speakers are in the same exact same category as Washington, Lincoln and Roosevelt, in many ways they are. They are trying to make unheard voices heard, finding a way for their needs to be given credence. They are sewing up differences between religions and cultures, and encouraging a fresh perspective on old topics. And with their work, so important, and probably unappreciated for many years, they are reminding us to value the least of us, and to honor the best in us. 

****** 

I do hope you're following us along on our cross country adventure. http://www.haveautismwilltravel.blogspot.com

Family is Family

We've had a nice trip so far. I feel so lucky that the kids were able to see/meet so far, an aunt, an uncle, two cousins, three second cousins, and 5 cousins once removed. At last I think that's what they're called.
We are exiting the freeway RIGHT NOW to go see Niagara Falls.

Okay, right after I wrote that we got off a ramp and saw that the clearance was only 12 feet.
We are at 12 feet 6 inches...at least.
So here's what I know:
New York State troopers are very kind.
It takes 5 lollipops to get myGirl througha call to the NY state police.
My husband and I are GREAT together in a crisis.

More later.. gotta go look at those falls (we made it!)
More later.

Conferencing

So I'm at BlogHer '10 in New York this weekend...I left Descartes and the kids in D.C. Last I saw them we were all hot and sweaty and tired from walking all around the monuments on the mall. They dropped me at D.C.'s Union Station, and I had a nice air-conditioned train ride in to New York. This was followed by a very hot, sweaty walk to the hotel, because, while I did navigate the train to subway connection, and I got on the right train...I was not paying attention and got off on 42nd street (which made me start singing) until I remembered that the hotel is at 53rd. Wow. With luggage and a laptop bag, and a purse to carry, I'm fairly certain I lost nearly all the water in my body.

Though I'm in New York for the weekend, we've started our Big Adventure, officially, and I hope you'll follow along at www.HaveAutismWillTravel.com on Twitter we are http://twitter.com/autismtravels

I leave New York on Sunday, and will take the train to Pennsylvania, a state I've never visited, then Descartes and the kids AND the grandparents will pick me up and we will really be on the road.

Then we are off to several New York destinations, Niagara Falls, Chicago, Mt. Rushmore, The Badlands, Yellowstone...and then it gets a bit hazy for me, but Descartes knows where we're going.