Busy Days of Summer

What a great week at the Lake house. Happy, tired kids and happy tired parents. Someone told me I looked rested today, someone else said I looked like I'd been "hiking or something." All I know is that I had a great time.

We had Sage and her family come up for a few days, and while I didn't manage to get a picture with all the kids together,  they got to do lots of things that they like. We went swimming at the beach, and went out on the boat and identified a rare bird for our neighborood. Jake got to chill on our hike, dribbling pine needles and rocks through his hands on the trail that used to be the train bed for the railroad that was built to supply the workers at Hetch- Hetchy.

 Kids and grownups scrambled all over boulders and only one foot of one adult, and one foot of one child got wet in the fun. Not bad. There were very few scuffles amongst the kids that were not resolved in under 5 seconds, and every single one was caused by Lucy being in someone's space. If ever there was a child who wanted a big sister it's Lucy. Thank goodness we have so many close family friends who will be able to step in to that role over the years.

Jake wore a hat. Woot! This is something we've been encouraging for the last two years, and it is really feeling like we can almost call it a success. With a history of melanoma in the family, it's especially important that we do what we can to protect the kids' skin. He lets me put sunblock on his face now too. Those ears get sun blocked every day, rain or shine!

Lucy got to drive around with the roof open on Daddy's Jeep. Even better when Descartes went back to the Bay area for a couple of days I got to drive around in the Jeep with the music and the sunshine and the bluetooth connection, and the awesome handling of the car, it is really hard not to smile the whole time you are driving that car... especially if you are driving it in to Yosemite because Oh My there is so much there right above your head.



I took the kids in to Yosemite by myself on Monday when Descartes went back to the city to work for a couple days. It was exhausting and awesome. Being responsible for little people all by yourself a long way from home with no local safety net is apparently something that gives me a bit of anxiety. It also made me feel powerful, strong and very cool. I'm sure driving with the wind in my hair and sun on my shoulders helped me get through. Did you know I am younger, more beautiful, and always recycle when I am in that car? Did I mention that we love the car?

Lucy asked me to take a picture of her where she is holding up the biggest rock ever. I think she got these crazy photo ideas from Mali and Iz. I will be studying how to get proper forced perspective shots so we can get them over with. By the time I take her to Pisa I want to be able to get that cool shot with her kicking over the Leaning Tower.

Lucy is loving being a little Junior Ranger. In fact, when asked to wear a hero costume to camp past Friday she chose her ranger outfit with hat and vest, because she thinks Park Rangers are like "heroes for the planet." This is one endeavor I do not mind indulging so that means a pin purchase and stamps from the ranger stations in our little passport book. It's been a learning experience for all of us, because as it turns out I did not know that garbage that you might find in the National Park that is over 50 years old should be treated as a historical items. So congratulations all you hippies who left your soda cans in the campground, they are now artifacts!

We explored an area new to us in the Yosemite Valley, the Happy Isles Nature Center. Most of it was very wheelchair friendly, and we were able to park about two miles closer with the disabled placard making the actual hiking part possible. We've been very good about asking Jake if he wants to walk or ride. I forget sometimes that his low tone means that he really will be tired and might not even be able to walk well towards the end of the day.

He and Lucy have both been pretty good sports given each of their limitations. She's only 6, and her little self gets tired out seemingly out of the blue. I think her blood sugar drops and she just plummets. She goes from greatest kid ever to, uhm, not the greatest kid ever. We can fix that most of the time with something from the bottomless snack bag that goes with us wherever we go.
There is so much to see and do, and there are all of those animals and birds to check out, I'm not sure that we will ever get tired of this beautiful place. It doesn't hurt that there is pretty decent pizza and if we stay too late, there's that awesome, inexpensive all-you-can-eat buffet in the evenings in Curry Village. We even discovered that the Pizza Deck has good beer (and commemorative glasses!) I'm not much for Hefewisen, but on a hot day at altitude it sort of hit the spot.
There was an Independence day barbecue, which included an airshow, and music, and many multi-generational families. The world is small, so of course the table next to us had a family that had retired to the Lake from my hometown, and the father had worked with special needs children in his first years of teaching. His daughter went to my rival high school. And there were many people who just stopped by to say hello to Jake. What was nice is that they all said hello to him before they said hello to me. Jake thought the tiny pony was pretty funny but chose not to pet him.

We did a lot of boating on the lake. This kind of cruising makes Jake very happy. He happily wore his life jacket and made me feel at ease enough to sip wine. Some days we took the boat out once in the morning and again for a wine and cheese cruise. It is such a luxury, and I cannot thank my husband enough for his ease on the water, parking the boat, picking us up on other docks. He makes it all look so easy. For the big celebration we entered the boat parade and while they don't give out a second prize, apparently we would have won it. It was supposed to be an historic event, so my darling husband bought hula-hoops and we went for the gold with Olympics 2012. That's the London Eye and Big Ben. We also had a cauldron and the Olympic torch. Little Lucy yelled "GO USA!" for about an hour. We had no colored paint for anything, so if you'd like to know how to make latex house paint go from beige to slightly not beige we don't really know the proportions, but it took coffee grounds, coffee, soy sauce, and a dash of Worcestershire. Pathetic, but very fun. Big Ben is very textured, and smells just plain odd.

Jake went back to summer school and has had positive reports filled with happy sounds and "cooing" as his teacher told me today. Lucy is settled into a new camp where she swims every day, so that little fish is happy and completely over tired by 4:30pm. I am trying to get back to work after weeks of sketchy Internet service. And Descartes and I are both trying to get back to a world where beer with lunch is not normal, and there is no ordering two-for-one pina coladas for me.

Tomorrow is music in the park which we all enjoy, and it just makes me feel all the more thankful because it seems every city in which I rest my head, is a pretty awesome place. Cheers!

Is the Gate Locked?

check. double-check

We don't ever really relax. We think we do. We get babysitters and go out for drinks with friends. We take turns keeping an eye on Jake, but really there are only five days a year I do not worry about my son: the 'week' he goes to camp. Other than that, my mind, and quite often my body,  is on duty twenty-four hour a day. Part of that responsibility is just what it feels like to be a parent, but I've seen other parents with typical kids, and I see how they can let go of their child's hand in the store, leave the car door or window unlocked, leave the back gate without double-checking the double-lock. They can expect that their child is not going to shimmy through the dog door, and just about disappear in silence.

But there are places that are easier than others. Places where I can let my guard down a little bit, because I either have the safety in numbers of responsible adults, or a well-enclosed space, or just one other person who completely gets my kid, and can recognize things that will be dangerous even if they look safe for another special needs kid.

Our house is one of those places, and thankfully we own our home and can make improvements and adjustments to the walls, and fences without asking any one's permission. Our home is safe, but not without some very serious rules, and a lot of attention to detail. If you come to a closed door or gate in my house...there's a reason, and it's probably not because I don't want you to see me naked. If you make a mistake and leave even one gate or door open, there could be consequences that range from, dirty shoes on the bed (so don't care), to a child covered in dog poop (completely annoying), to a boy who has wandered past the driveway (very worrisome, and I can guarantee that I will cry when we find him), and of course, there's death, because we really can't be sure of Jake's safety awareness, and it's not like he is just going to come back on his own, unless he decides to return through that open gate. Lucy just turned five, but after a pre-teen visitor to the house left the back gate open, I told her that no matter who comes in behind her, even if it is a grown up, it was her responsibility to make sure the gate is locked after any time she passes through it. She gets it, and has done it without complaint, but the amount of responsibility we must place on her is nearly unbearable to me.

Mt. Tallac at sunset.

Tahoe is a safe place for Jake. My sister and her husband, and their children all look out for him, know his abilities, and know when he is not okay by the tone of his vocalizations. The backyard is large and gated and filled with toys and tan bark and a trampoline where the little kids entertain him with their bouncing, twirling and bickering. I know that Jake cannot escape from the backyard, so when Demanda and Jaster clean up the entire place for Jake (thank you thank you thank you), all we need to do is periodic checking for dog poop, which you would do for any bunch of kids playing. With everything taken care of, we can sit on the upper deck, all four children within our view. With nice weather and a frosty beverage this almost looks like relaxing.

And even luckier, I have a few friends who either have Jake-safe homes all the time, or who care about his safety enough to change things while we are there. One family has cleaned up a dirt area and put in palm-sized rocks for Jake to tumble, and ensures that the pool gate is locked at all times, and another has a big front yard that is fenced and filled with dogs and kids who will not let him go out the front gate. We have still more friends who try, in every way, to make their houses a place where we can bring our entire family, by checking gates and keeping the front door closed, even when it's an Open House.

But as much as I really do not want my child to be injured, there is another part of him being safe in our home, in our extended-families' homes, and our friends' homes which may be even more important; it's acceptance. Acceptance cannot be nailed into a wall, or double-locked. Creating an environment of acceptance is not as easy as just sweeping up.

Acceptance is knowing that my son might trample your new grass, or steal the top soil out of your planter, and inviting him to play nearby them anyway. It's not really keeping track of the number of little things he's swiped off your counter, and hidden or broken. And not being too bothered by the copious amount of food that always seem to be at my child's feet. It's inviting a child, my child, with 'toileting issues' to come swimming anyway. It's believing my son has something to say. And it's forgiving me when I can't clean up our debris and dishes because we "have to go RIGHT NOW."

It's inviting us over at all.

And it's inviting us back.

I am thankful.

****

a version of this post was an editor's pick today at OpenSalon.com

Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

Give Me A Little Sugar

I went to Jake's school yesterday for the parent group meeting. I love going on his campus.. it is so filled with great people and interesting kids (and adults).. and friendly office staff. Each time I step on that campus I am reminded how lucky I am to have my son at such a great school, and grateful that he is thriving there.

Jake's been having a lot of trouble sleeping lately. I'm not sure if it's growing pains or nightmares or pre-teen angst, but he's been up and out of bed as many as ten times a night. Sometimes I hear his feet patter across the hardwood, other times he whoops and hollers (which his little sister just loooooves.) It doesn't really matter because unless I am really, really sick,  I can hear my children through closed doors with the television blaring... I can hear when a blanket has slipped off the bed leaving a little tushie uncovered. Is this a mom thing? or a skill I have picked up because Jake requires such constant monitoring?

Lately if I hear him all the way out of bed and coming down the hall I will greet him and lead him back to bed. He usually dives back in, but more recently he's been leaping in to bed, then sitting back up and looking right at me, as if he is asking for me to sit with him, or lay down and sing to him, or pet his hair.

He has added a new level of relationship to his repertoire, and with these new developments we are experiencing more snuggling, more hand holding, more gentle swishing the hand across a person's back, and, at school, I saw him lean in for a hug from a peer. Not a class aide, because he is generally pretty friendly with his aides.. but another child in his class! Apparently the boys have mutually decided that they are best buds, and the other little boy hugs Jake and speaks to him in sign language, and Jake laughs and reaches out to hold on to him...and there's smiling, so much smiling!

And Squid and I had a good laugh because she had heard that her son had become best buds with Jake in another classroom. She was surprised to learn that it was our Jake! Our boys are seeking each other out, standing near each other...hugging?

Our nonverbal, English-as-a-native-language in a predominantly Spanish-speaking school (previously), Jake has still had friends, he even had a girlfriend in first grade (the daughter of a class aide fell madly in love with him!), and everyone seems to know he has a good sense of humor. I'm not surprised really, because as not-nice as I think I am, I have managed to collect a lot of wonderful friends, and I don't think there's a person yet who hasn't liked my smart, kind, always-does-the-right-thing, husband.

I didn't know I had a check-box on my "Life List for Jake" that had anything about ensuring he could establish friendships on his own, but of course I did, I think that must be normal, because I know I have it on Lucy's list. Nice to be able to check a few things off now and then

Posted By Popular Demand: Cake

It is my sister's birthday next week, so while she was visiting this weekend, in between the reveling and the beer-making, and the beer-drinking and the concert-going, I made her a cake.

A few of her favorite foods in life are mayonnaise, chocolate and apparently Bordeaux chocolates from See's Candies..that last one I actually didn't know about when I chose which cake to make her, but this cake sort of managed to hit all those sweet spots.

I remembered that I had read about a World War II era cake that used mayo instead of eggs and shortening because as two of you may recall, and a few more of you may have read.. there was rationing during the war...back when people actually had to sacrifice some of their personal luxury for the benefit of a greater good...but I digress.

Wikipedia tells us "Tires were the first item to be rationed in January 1942 after supplies of natural rubber were interrupted. Soon afterward, passenger automobiles, typewriters, sugar, gasoline, bicycles, footwear, fuel oil, coffee, stoves, meat, lard, shortening and oils, cheese, butter, margarine, processed foods (canned, bottled, and frozen), dried fruits, canned milk, firewood and coal, jams, jellies, and fruit butter were rationed by November 1943."

And since necessity breeds ingenuity, the bakers, really, the women of that generation, found new ways to make their cakes..voila... the delicate deliciousness of this cake was born.

This recipe comes from America's Best Lost Recipes: 121 Heirloom Recipes Too Good to Forget in which I have found several great recipes, for obscure and once well-loved foods like Runsas, which are also called Bierock which my family loved.

World War II Chocolate Mayonnaise Cake (all italics are my own notes)
Ingredients
Cake
2 cups all-purpose flour
1/4 cup Dutch-processed cocoa powder
1 teaspoon baking powder
1 teaspoon baking soda
1 cup mayonnaise
1 cup granulated sugar
1 teaspoon vanilla extract
1 cup water



Frosting 
(I doubled the amount of butter, brown sugar and milk, and used 1 1/2 cups of powdered sugar to make my frosting, because we always like more frosting. I think if I had used the entire amount of powdered sugar it would have been too stiff.)
4 tablespoons unsalted butter
1/2 cup packed light brown sugar
2 tablespoons milk
1 cup confectioner's sugar

Directions

Adjust an oven rack to the middle position and heat the oven to 350 degrees F. Grease and flour a 9-inch square baking pan. (Because you make this in a 9x9 pan you can actually use your counter top (toaster) oven to make this cake, thus avoiding heating up the entire kitchen!)

Whisk the flour, cocoa, baking powder and baking soda in a medium bowl.

Stir the mayonnaise, granulated sugar, and vanilla together in a large bowl until smooth. Add the water and stir until combined. Whisk in the flour mixture until incorporated.

Scrape the batter into the prepared pan (you can actually let kids lick the spatula here without worry since the eggs in the mayonnaise have already been cooked! A great cake to make with little kids!) and bake until a toothpick inserted in the center comes out clean, 30 to 35 minutes. Cool completely in the pan, at least 45 minutes. (Many people leave this cake in the pan and frost it there. I flipped mine upside-down onto a serving platter before frosting it so it would look more birthday-ish and less Grandma VanZanten Poor-Man's Cake-ish..but let me tell you Grandma VanZanten's cake was AWESOME!)

*****
For the frosting, melt the butter in a small saucepan over medium-high heat. Stir in the brown sugar and bring to a boil. Boil until the mixture begins to thicken, about 2 minutes, then, off the heat, carefully stir in the milk.

Return to a boil, then remove from the heat to cool until just warm, about 30 minutes.

Stir in the confectioner's sugar and spread the icing evenly over the cake. The cake can be stored at room temperature for up to 3 days. (if it lasts that long!)

Enjoy!

While You Were Out...

So apparently the world does keep turning, even when I am not on Twitter, FaceBook and every other form of social media on which my moniker aspires to perch. I lost some followers, but since I don't even like that word it doesn't bother me much.

My family is on the mend too. February was a blur of illness and fever and snot, and for me it also included my first nebulizer, steroids and some heavy duty antibiotics.

Sage reminded me that probably the best lesson I could possibly learn from being sick for 25 days is to learn how to ask for and accept help. This is a big one for me. When I ask for help I feel like I am failing, like I am letting everyone down, and I hate that feeling.

I am grateful that my closest friends don't wait for me to ask them for help, and they jump in and shuttle my kids, cover my work, make me dinner, buy me groceries and call to check in on my feverish little self. I chose well, and I'm so glad they chose me back.

What is interesting to me is that I love helping people. It pleases me when I can make someone else's life easier, so why can't I just accept help...especially in the beginning of a problem so it doesn't spiral out of control later? I think I actually know part of the answer...Jake.

I feel like I am going to have so many BIG THINGS I need help with in life that I sort of don't want to use up all my chits asking someone to pick up two rolls of paper towels from the market for me. When Jake stepped on a three inch nail, I needed someone to take care of my daughter right there at that moment, and I had that in two minutes. I guess I don't ever want that feeling like "Oh I just asked her to do this little thing and that thing, so I don't really want to ask again for this."

Now I know I have close enough friends now, after being a part of both this special needs and the greater community, that I really could ask for just about anything and someone would help me. I know an amazing, powerful, get it done bunch of people, and yet I am loathe to ask for help. Even when someone is offering, and it's easy and they are already there, in the store, I feel like I am being lazy, or not self-sufficient. And even as I write this I sound like a ridiculous martyr.

Yeah, I know.. get over it. And I'm trying. I am.
and I really want to thank my friends for taking care of me and feeding my family here, and thank you, dear sister, for taking care of my sick husband and my babyGirl for those 3+ hellish days. Descartes could not have asked for a better nurse, and it is a darn good thing I sent those two to Tahoe, because I probably would be dead if I had tried to take care of Descartes that weekend too.

***********************

This morning Descartes got up with "all those children".. I have not slept so soundly in a hundred million years, just 1.25 hours past when I would normally get up, and I felt so much better. Sadly I think I get my best sleep between 5:30 and 7:30; these are also the hours when I have been nursing, or getting children ready for school for nearly 10 years. Oh my God ten years.

***********************

We took a hike this afternoon, not a long one, but just long enough for me to realize that I didn't do much walking for the past month. Jake did such a great job. He walked the entire time without dropping to the ground once or trying to run away. He held Descartes' hand the entire time up and down some steep hills. We went about a mile round trip, which may not sound like a lot, but when you have a kid with cerebral palsy that you don't think will ever walk.. it is life changing for our family... and yes, Lucy hiked in a princess dress, and heart-covered tights and pink converse with multi-colored stars. We were quite a sight.

Experience

just ran naked into the Pacific ocean as the sunset faded into the water.

Damn. I have a great life. Thanks for watching the kids Descartes!

Jack Handy by Jennyalice

Tonight I talked for a very long time with my dear friend DB (Descartes did too.. which is impressive because Descartes probably doesn't even know where the phone hangs up in the house he uses it so infrequently). DB is in a place few of us ever thought she would be. She's probably going down the path to being a "divorcee". Phew. Wow. 

So a whole new chapter of life, and so we talked through what it means to be this "new person". Actually we talked a lot about deciding who exactly we are in this life, any life. I am trying to be the same person wherever I am, with the same moral code, a similar disposition; dynamic but stable. Somehow I want to recognize that I am this person now because of all that I have encountered; the fabric of my life makes me who I am but doesn't dictate my future entirely. I know  I am not going to wake up and be someone new, and neither is she, but I can make changes, make choices.

While we were talking she said please just email me some of these things we've been talking about. They don't encompass our entire conversation, nor is it my new mantra, but here are my "Jack Handy" thoughts for the evening

I am trying to be a woman first who has a husband and children. I need to be me first. I need to figure out what it means to walk a mile in my own shoes. If I do not know who I am  I cannot effectively be much to anyone else, not my spouse or my children. 

I spend time with people I respect and admire. I want to cultivate relationships with those people who have attributes which I want to emulate. I do not waste my time with people or in places that do not add to my heart or spirit. I start fresh every morning. I wash my regrets away at night when I wash my face.

I do my best. 

I choose the right thing whenever I possibly can. 

I love.

Clean Not-So-Mini Van, Friends and Art

I cleaned out my car. This means I now have at least 2 Costco-sized, and 3 Trader Joe's bags filled with krap in my kitchen and guest room. That's the bad part. The good part is that I was able to pile friends in my car yesterday and wind our way all over the Bay Area.

Emerald Hills at Ep's house is a peaceful way to start an October morning. There are quail and deer and birds and had we stayed even a few moments longer we would have heard the bees buzzing in her lavender bushes. It is a slice of country just blocks from my own home. It is one of my new favorite places, which makes sense to me as this is now the second woman that I really like who has owned the house.

280 North is always a beautiful drive. The lanes are wide and the road sweeps in gentle curves back and forth... and people drive fast. I love to drive fast. From the back seat I am asked by Captain Blog "Are you a lead foot?" I ease off the pedal as Squid reminds the carload of potential San Bruno area drivers that this particular area is a happy hangout for the Po-lice. I ease our way into a pack of cars who have slowed to 70 and realize that I rarely relax.

The Golden Gate Bridge shed its fog for the morning and a necessary potty break landed us in the Vista Point parking lot with clear visibility all the way back to the San Francisco peninsula. I take a short walk around the parking lot and returnto my seat behind the wheel thinking, "Wow. We sure are lucky aren't we?"

Sebastopol is farther away than I remember, but not so far that my coffee cup still has some warm caffeine when we hit some sort of magical coffee hut/hip people mash-up. I enjoy a Lattacino, which is perfect for me unsweetened with less milk than a latte and more than a cappuccino. There are lots of children with striped tights and layers of clothing.

We head into downtown and unleash ourselves on the farmer's market. DT and I debate whether we need to create a makeshift icepack so we can enjoy tasty cheese later at home. We meander about. I eat a peach the size of my daughter's head and buy award winning honey and a loaf of bread which I share a bit of, but mostly I hold it and nibble on it as if it is a lollipop in my hand.

Do I have this out of order already? probably. It was the Sebastopol Art Trails, and at Squid's invitation we (mostly) follow a schedule of bliss which also includes time for amazing artists, lunch on a patio, a visit to a nursery and because we still had time a new tea house. One of my favorite stops was Patrick Amiot and Brigitte Laurent Their work is fantastic. It is whimsical and interesting and charming and edgy and beautifully painted and I want a sculpture in my front yard. I buy my sister a calendar, and hope that she will know that I wanted to buy her half the art in the place when she opens up the calendar for her birthday (which is today).

The countryside was beautiful, and while Squid is the most perfect navigator, I almost think she let me meander a bit on those winding roads purely because I was enjoying the scenery. The grape vines are all turning and the apple trees...the apple trees! Everywhere and loaded, and dropping their fruit. It would have been a good day to be a drifting horse, munching gravensteins here and Mcintosh there.

In Graton we viited two artists who share a space, and, I believe a life together, Lisa Beerntsen and Tony Spiers They also had a beautiful garden. They have been a part some incredible group art (Art Farm) which has been at Burning Man. It was neat to see the art in the studio, because my current life path does not indicate an adventure to Burning Man is going to happen. Lisa's art was very beautiful. In some of the current pieces she had incorporated vintage fabric. I love mixed media in general, and I love fabric even if I will probably never win any prizes for my sewing skills. I'm certain I will always have a pile of fabric in a box. Perhaps someday it will be vintage and I will make a mixed media art piece when I retire to Sebastopol.

We also visited Helen Caswell, a beautiful woman with a precious husband. (How many times have I said beautiful?) I would love to be the new renters on their expansive property. I wish she could be in my family, and in an eerie sense I feel like she is. My grandmother was an artist. She was many other things professionally, but I think had she been born in a different time or circumstance she could have made her life as an artist, as Helen has. Sifting through her prints I was amazed to see just so many portraits; so many faces she's painted over the years. I can't imagine having the ability to distinguish each face and render each one so accurately. Don't tell Descartes, but I bought two small prints. They are not originals of course, but I will love them as if they are.

Our last art stop of the day was Rik Olson. A charming man who manages to create beautiful and witty art in so many ways. He is one of the few masters of wood engraving left. It is painstaking work, and making color prints takes layers of art. Ep and I discussed the idea of thinking backwards and in steps and decided it will not be my next career. Rik also participated in this really cool benefit thing where they made prints using a steamroller.

After breathing in a little bitmore apple-scented air at the Olson studio we went back to downtown Sebastapol and tried Infusions The tea selection is amazing here.

Hmm funny here I am getting tired writing, just about the same time I got tired in real life.

The end of my story is that I enjoyed a really lovely day with some very lovely people and came home to my son sound asleep, my daughter awake for a potty break and my sweet husband tired, but just happy to see me, and not cranky at all about having watched the kids for more than 12 hours (of nearly all awake time). I got to read Lucy a story then pass out asleep on the couch before Descartes nudged me to go downstairs to bed.

Clean car, good friends, interesting art and a happy family. Now that's a pile of luck.

Change

Anna, Jake's loving, kind, tender, demanding, experienced aide..is no longer going to be his aide at school.

She can't physically care for him and take care of her body. When she asked about the future, changing her position in the class, being his aide half day etc, on Friday, she had no idea that it would mean that Monday morning she would be somewhere else.

I sobbed on the side of the road after I dropped Jake off at school today. His classroom teacher Janet had tears in her eyes when she told me. She didn't know until this morning either when Anna called, also in tears. It was the right thing for the district to move her. She will be with pre-school kids now; little ones who are a third of Jake's body weight. She will help little 3 and 4 year olds with disabilities and sad mommies, and those people will be so lucky to have her there. She is a good egg. She is good to the core.

and we will be okay. I can say that now, 12 hours later without having the tears in my eyes slip out onto my cheek. Okay I guess not. I am crying again.

It goes like this right? I mean change is the only thing that's constant. It will be a growth experience for all of us. We will find someone else who will care for Jake, and fit into the classroom, and not be bitter that my nearly 8 year old still isn't toilet trained. He or she will help him eat, and encourage him and know soon enough what his favorite book is and remember first to offer him water when he is upset.

I had to explain my tears to Lucy who sat patiently in the back seat eating vanilla wafers while I pulled to the curb and cried in my hands that no I was not mad at her. I said I was sad, and she asked me why.

I didn't tell her the whole truth. I left out the part about how people are unkind, and impatient, and most won't bother to learn all of Jake's subtle cues about when he needs to eat and pee and rest and run. Didn't tell her that while aides get paid a bit more for a kid in pull ups they will begrudge every minute they are in the bathroom with your kid...or worse yet leave your kid in soiled pants and let them get on the bus because they won't be there on the other end of the ride when Jake is miserable and yelling and has kicked off his shoes because he is so upset and embarrassed. I didn't tell her that the difference between a good aide and a bad one will make our home life easy or hard every single day. I left out that an aide without intuition may as well not be there, and that if her brother isn't pushed and held to standards he won't learn and grow and we will lose even more time. I couldn't bare the thought of explaining that most people will just think her brother is severely mentally retarded and never even notice that he laughs at jokes and smirks when he has gotten away with something. I didn't tell her that I was crying because her brother's life is hard on an easy day and finding someone he can spend all those hours with and feel safe and happy will be just one more thing that makes it hard for mommy to relax while he is in school.


I told her I was sad because one of Jake's teachers had to get a different job, and that Jake was really going to miss her. She asked if it was Anna. and when I told her it was, Lucy said "me too."

We will all miss her.

I picked Jake up from school so he could have some time with Anna who had to come back to his school to drop off her keys. They hugged and we all cried and Jake kept hugging her and loving on her. We gave her a pretty ring as a goodbye present, and I made sure she has all of our information. Her new school is actually only three blocks from our house, so maybe we will get to see her sometimes, but we know how it goes in this life.

I am trying to just sit in the space of thanks. I am so thankful that we had a chance to have her as such an important part of Jake's life. He is a better kid for having her as an aide, and I was so thankful for being able to relax when he was in her care.

and now I am going to drink a beer.

Coolness

We had our reading at Book Passage yesterday for Can I Sit With You? (www.canisitwithyou.org).

It was really pretty neat to present our book in the same little nook of Book Passage that hosts celebrities like Anne Lamott, Salman Rushdie, Lewis Black, Carl Hiaasen, Henry Winkler, Barbara Walters, Mario Batali, Brian Copeland, Maria Shriver, Alexander McCall Smith, Leah Garchik, Isabel Allende, John Gray, Amy Tan.. not all of these people are my favorite authors, but they are names most people recognize.. and I stood at the same little podium and talked with Shannon about our book, the impact I hope we are making, and how we managed to do it all for very little money, all the while adding to the coffers of our Special Ed. PTA SEPTAR (www.septar.org)

You know we are doing a second book. We are still accepting submissions until the end of the month. If you have a story that you would like to tell but aren't sure you can write it yourself I would be happy to ghost write it for you. Just send me an email and I will help. We can even use a pseudonym if you don't want your name associated with the story but you think it should be told. C'mon write a story send it to ciswysubmissions@gmail.com it will make you feel better to get it off your chest.

Thanks for all of your support.

Victories

I'll take 'em however I can get 'em

Just went to the grocery store with both of my children. We are all still alive, and it was actually a "real" shopping trip...or at least we filled the cart. I was just telling Squid that while I'm quite certain I paid more than I normally would for some items, I am willing to pay more if it means that I got to take my special needs kid out on an errand that will be a part of his life forever and have it go better than okay. He was happy and jumpy and squealy and smiling. Lucy was begging for ham and bagels. I was able to keep hold of Jake's hand AND get Lucy her raisin bagel. I am calling that success.

I only got one "oh poor you" look, and it was from another mom with a kid in her cart that was "too old" to be there, playing with a small box. Perhaps her look was actually "oh poor you, I have one of those too."

We got help to the car from a young kid who thought Lucy was the most precious kid who ever landed on the planet. And she is precious, but mostly because she finally fell asleep in the car on the way home allowing me to unload the groceries and make dinner for both kids sans drama and "I NEEEEEEEED that Mommy."

Now I just need to get through dinner and bath time.

I can do it.

I can do anything if I can take those two kids to the grocery store.

Back to School...and work

We had a great weekend post vacation-Jake camp-Lucy sleepover week. It was nice to just be us, at home. We did have Sage and her wonderful family over on Saturday night. They are such an easy crew with whom to pass the time. I love that her seemingly quiet husband has become the joking conversationalist as he has come to know us, and that their daughter is now a little chatterbox where she once looked wide-eyed and a little afraid of us. We are not a quiet family with a quiet life. Even on a sleepy day we still have Jake and his unpredictability and Lucy and her wackiness, and me with my drama and need to please and entertain, and two gigantic golden retrievers, and my dear Descartes who by sheer height can worry some people (it's a good thing he has a baby face...).

It's been a good thing to have people over more often. We will figure it out. Now that the backyard has usable space I don't feel like there is nowhere to go. I know we always have enough food and drink, but I worry about trying to crowd people into too small a space...especially people with kids who need a lot of space, or distance from my special kid. If I can just get a grip on the clothing mountains and the paper foothills variously piled throughout closets and corners I'm sure the place will feel bigger. I saw a shed at Costco last night and contemplated putting it in the side yard and calling it my office. (Don't worry mom...I'm kidding)

Driving around the state with Descartes I realize by all of his comments, how happy he would be, how happy each of us would be, if we had a little bit of fenced-in land that was not so close to neighbors. Jake was always so, so happy in Montana, and of course Descartes loves to build things. If my property in north-eastern California were closer, I'm sure we would have a small cabin by now. It would be nice to have it while the kids were little and still wanted to hang out with us, but I am hoping that within ten years we will be able to buy just a few acres...somewhere.. fence it in, make it safe for Jake and be able to relax while Jake plays in the woods (his favorite thing in the world to do). We've talked about buying a place near here in the Santa Cruz mountains. Something close by we could use every weekend if we wanted. I keep checking the ads... one day we will find the perfect place.

Jake went back to school this morning and Descartes went back to work. They both put on cheerful faces before they left the house, but I know that neither one of them enjoyed getting up this morning. Lucy and I have already had breakfast and played the www.pbskids.org Caillou games. I do not understand her obsession with this whiny, balding, four year old kid, but the television family seems decent enough and he gets busted when he's mean to his sibling, so the lessons aren't bad at all. I need to get Lucy her own computer. Something sturdy she and Jake can use. Jake has always loved computer at school, and with more help and practice it could be a very useful tool for him... and Lucy wants to "move da mouse squeak squeak" and "Click now? Click now? Now mommy?" So I am thinking she's ready too.

Lucy meets her new day care provider this afternoon, but first she must go to her 2 year old appointment. Will there be shots? Hmm must remember to bring lollipops.

Good. Kind. Kid.

I did it. I took Jake out with his buddy from school yesterday.
That little boy was so wonderful. Polite and the kind of kid we only
hope ours act like when apart from us.
He was a joy. Jake was so happy.
It wasn't as hard as I thought it would be. I mean it was later..but that's another story.

__________________________

Okay the other story I can tell now that I am not trying to type from my phone...it was hard because LATER.. I got to thinking about how Jake's friend and I talked about all sorts of things he likes to do, and who he plays with, and when I dropped him off he was able to tell me where he lived, and who his neighbors are. He could read the menu. He ordered his own lunch. He asked if he could use the bathroom. He made a joke about something. Basically he was a "typical" kid (although he is actually more than typical, he is truly exceptional with his compassion and awareness of others and their feelings and needs.)

I got to thinking about the fact that Jake isn't like that. Now we have plenty of friends who have kids the same age who have sailed on by Jake with their abilities, but we have known those people forever, so it is sometimes painful when comparison is impossible to squelch, but generally that just stopped happening years ago. But here was a kid who is in the class next door to my kid. I am not often derailed with this emotion anymore. I know it will happen again and again as "typical" milestones come and go, but most of the time I prepare myself for them.

Last night I just had to swallow that little sadness and be so, so thankful that Jake's friend's parents have raised such a good kid. Thankful that Jake sends some sort of vibe out into the world that draws at least a few kids near him, (even a little girlfriend for awhile!) I praised Jake in the car after his friend left, letting him know that it speaks to his character that other kids like him even though he doesn't talk very much. I told him that some of his friends probably appreciate that he is a very good listener.

I swallowed that little pain (with a little cocktail I'll admit) knowing that I never would have met this delightful boy if Jake wasn't the child he is, and I probably never would have appreciated the wonder of watching a child read his own menu, buckling his own seat belt and thanking me for lunch. I am a better person with Jake in my life. I know I am. So I am choosing to be just ever so thankful to Jake's friend for being nice to my kid, for coming with us to lunch, and for wanting to do it again sometime...also for asking if Jake would like to play basketball at his house sometime.. .because Jake's friend? He volunteered to help Jake play.


Can I Sit With You?
buy it now at http://www.lulu.com/content/1466612

www.CanISitWithYou.org

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.

Now That's Good Customer Service

I just went to the dry cleaner.. not just any dry cleaner...my dry cleaner. Our relationship has gone to a whole new level today.

He said "Jenny?" (and he really calls me Jenny, something not so common unless you knew me when I was a kid, know me from this blog, or have known me a long time) "Jenny, are you sad about something? You look sad today."

wow. that obvious?

So I answered truthfully, which appears to be my only ability lately, and it is not always in my best interest to tell the truth, or at least the truth as I see it, but my yammering has been full of it these days.

I said, "Well, I had a long talk with my mom...and I made her sad, and that in turn made me sad, which made her a little more sad, and a little mad, which made me mad, and a lot more sad, and everything will be okay, but it was just a lot for one day."

and he said, "It will be okay. You love your mom, the way you talk about her. You went on a trip with her last year right?" (which is impressive that he would remember don't you think?) "You love your mom and she loves you, it will be fine. Cheer up Jenny."

and I left feeling like the world is a pretty good place..and then I went to get coffee because I am hoping that caffeine can help put my brain back together.

and who shows up next to me?

my dry cleaner...my dry cleaner who says, "I would like to buy Jenny's drink." and when I protested, he said, "Let me do this for you. You need to cheer up Jenny."

so I let him buy me my double shot of espresso with a little dollop of whipped cream.

and I am, I think, a bit cheered up.

Don't you wish he was your dry cleaner?