Surprise! Seriously? Yes Seriously

My sister rocks. I have an awesome husband... and in case you were wondering, I also have some very fun and lovely friends.

I actually was surprised on Friday night. Now I don't want to be cynical or anything, but I am not surprised very often, not by bad behavior, people who steal my wallet, traffic, weather changes, or poopy diapers as we are walking out the door. I have learned to anticipate almost every single one of life's little disasters because they all happen to our family, every single time they can. So, you know, I am not surprised.

I am however, completely taken off guard when people a) like me b) do nice things for me without me being in complete crisis c) take care of me without me knowing what is going to happen next.

My sister Demanda managed to gather up some of my favorite women, and make a plan to go out on Friday night they all kept the secret! We picked them all up on Friday night in our AdventureVan and went to three of my favorite places.. all to celebrate my birthday!

I was supposed to have Demanda and Jaster and her boys for the night because I thought they were headed down to the OC and stopping on their way through. When she got here I kept asking her, probably more than 5 times if she was kidding; if perhaps there weren't actually three boys hidden in her suitcase or something. But no! She came all on her own, and said she had a surprise for me.. and [gasp!] I should go take a shower and look beautiful. I started to cry because I feel like I plan every single thing ever, and here was something fun that was going to happen and I was not responsible! I had already had a day filled with snotty noses and crying children and earaches and trying to work while my precious little Lucy climbs all over me and reminds me that I never play with her because I am always working. It had really been a fun day.

Then Descartes came home from work early, with champagne, my favorite thing in the world besides my family and friends. He popped the cork, poured me a glass and I ran downstairs and got gussied up. I even put on my new boots. I know they are so ridiculous aren't they? I love them. I had already secured a babysitter, thinking that we would just go to dinner downtown with my sister.

The three of us scooted on down to Savvy Cellar where we devoured some charcuterie and some [more] champagne. Then zipped back up the hill to get the first gal on the list. Yay!

Sage was waiting in her front window, and I immediately understood why she had tried to convince me earlier in the day to stop cleaning up for my sister and take a nap. Next, we went around the bend and picked up Strecks, which is really lovely, since she's a new friend to me this year. Her daughter was the very first person Lucy played with on the very first day of preschool. Those girls are total BFFs and I think Strecks is very cool. She's also a good liar because she asked if I wanted to go to Bingo night, when she knew that we would both be drinking up delicious wines instead.

Then we went all the way up the next hill, because apparently everyone I am friends with or related to lives off the side of a hill or a mountain... and picked up Squid and Jenijen. Squid of course is also a sweet deceiver because she tried to make all of these elaborate plans to maybe meet up for a drink, but you know "maybe she wouldn't see me" because she and Jenijen were going to be seeing Avatar (and here is where I stopped and spent about 20 minutes trying to turn a beautiful picture of Squid into an Avatar. Here is a tutorial if you are thinking about it yourself. I am not that cool, nor do I have that kind of time.)

We also scooped up Pollyanna (from up on her hill) who brought along with her a horrid cool birthday sash for me to wear. It read "Birthday Princess, and I was "required" to keep it on until I finished my first beer. There was a sparkly wand too! MaryMoore met us at the bar (she had driven from her hill too.. jeesh I am serious.. everyone lives on a hill).

We took over a few tables outside at The Refuge, one of my favorite places to go. Jaster, Demanda, Squid, Seymour, Descartes and I have all put a dent in this place before both together and separately, so it was sad that Jaster couldn't be there because hey... Seymour joined us too! We were kind of crunched into the table, so much that I couldn't even get up to kiss anyone goodbye (sorry Seymour), but it was a nice kind of cozy, and the beer is just so good. They no longer carry my favorite Allagash Curieux so I had to switch to a new one Koningshoeven Quadrupel, which was also heavy and delicious. We had all sorts of ales and eats. It was lovely and lively and there were cupcakes from Vanilla Moon which were really decadent and with so many flavors to choose from, made me feel like I was tasting wedding cakes all over again.

We wrapped it up and headed down the street to Cask. We lost Seymour and MaryMoore, but settled down with some red, white and champagne. It wasn't very crowded so we got a real chance to talk and laugh, and take a few photos. We closed the place, and our trusty driver, Descartes shipped our tired bodies around town, dropping ladies off on doorsteps.

It really was a lovely evening with great people and wonderful food and drink.

Thank you. Thank you. Thank you.

(All pictures by jenijen, unless she was in it, in which case I probably took it. There are more pictures coming...)

My Bad Dreams: MMR, Wakefield and Advocacy

It doesn't happen often that I am asleep for enough hours in a row to dream, but last night I got there. Unfortunately my only dreams were those of unvaccinated children, and sickness and rallies and something about a huge "pile of advocacy" that I was responsible for sorting and re-building properly so we could all climb to the top. Yeah, very restful.

After the news yesterday that the General Medical Council found Andrew Wakefield "had acted 'dishonestly and irresponsibly' in doing his research." My stomach just sort of kept churning.

You see, this just means more children will go unvaccinated and be exposed to horrible diseases, and it means I have more work to do. Anyone who does not believe that vaccines caused their child's autism has even more work to do now, because Wakefield just got more air time. Andrew Wakefield's unethically performed project now has another platform to do damage, because his supporters are loud and they have a passion that is untethered to reality. In the face of science and studies and information, they cling to anecdotal evidence, and if they are threatened with truth they do not calmly listen or examine where their logic may be false. Instead they insult people (like my brilliant friend Kristina), or they leave nasty notes here on my blog, and on other advocates pages. With Wakefield in the news, the media will go round and round again about "the controversy" of vaccines (like that news guy I used to like Matt Lauer). The Age of Autism herd, Jenny McCarthy and her McAutism clan have more things to set on fire now. All of Wakefield's supporters will just add this to the list of "big pharma" and "government" keeping us all in the dark, harming children on purpose. They must come to his defense because the truth would be too painful and would undo their entire existence.

So now I need to push more for real help for families affected by Autism. I am not going to say I am on the "other side" because I fight for those people's children too and for all those children who are "healed" but still need a full-time aide. I don't want there to be sides, I want all of our children to get the help they need now. I want families to have the support they need, and I want my child to have a place to live when he's grown and I am gone. So it's back to work.

Here you can sign the petition to encourage First Lady Michelle Obama to meet with Autism Families because when Wakefield's bogus findings show up on the news, monies are swayed away toward vaccine/autism "research" instead of helping actual families.

and don't get me wrong, I am very glad Wakefield was officially, and for public record, found to be unethical. After reading through most of the 143 page document, it is clear that he went rogue and did not act in the best interest of those children. But because of this statement:

The Panel wish to make it clear that this case is not concerned with whether there is or might be any link between the MMR vaccination and autism.

I will be most happy when his name can slip off the front pages and we can all get back to the business of caring for our children.

Thank you to Shannon Rosa, Liz Ditz, BBC news, and Brian Deer

Breakfast Cookies

(this is cross posted at (Never) Too Many Cooks where I had a sneaky little guest post.)

My son eats a lot of food. No really, a lot of food, and since he has a physical disability, he needs quite a bit of help at meal time. Breakfast is always a blur at our house, and in an effort to be most efficient, get out of the house on time, and offer Jake more opportunity for independence, we have tried every cereal on the market. They all end up in little pieces at the bottom of the box, or scattered all over the floor. So we want him to be able to feed himself, and it has to be fast, and his sister has to like it. Frustrated by the $4.00 price tag on 5 ounces of granola nuggets, I decided to try to make cereal cookies. This is my first try. It is basically a takeoff on any oatmeal cookie recipe, with cereal instead of the oatmeal.

I use a professional grade KitchenAid stand mixer and aluminum jelly roll (cookie) pans in a non-convection electric oven.

Ingredients

• 3 eggs (I used large, not extra large)
• 2 sticks of softened butter (I do not ever bake with margarine)
• 1/2 cup brown sugar
• 1/2 cup white sugar
• 2T vanilla extract
• 1 cup white flour
• 2/3 cup wheat flour
• 3/4 tsp baking soda
• 3/4 tsp baking powder
• 1 15 oz box muesli cereal (I used Safeway brand)
• 1/4-1/2 cup oatmeal (as much as needed to make the batter more on the stiff side.)

Directions

1. Pre-heat oven to 350F
   
2. Cream butter and sugars
3. Add vanilla
4. Add eggs one at a time, beat until smooth
5. If you are a good person you will sift your flours, baking soda and baking powder. But since you are not a superhuman, just try not to have any hard nuggets of baking soda or baking powder..then with the mixer on a low to medium speed, slowly add the flours, baking soda, and baking powder.
6. Mix in the box of muesli. You could hand mix at this point, but I have a heavy duty stand mixer, so I make it do the work.
7. Add in the oatmeal a little at a time until the cookie dough is more on the stiff side.

I use cookie sheets with parchment paper to cook most all of my baked goods. It allows me to place all of the batter onto the sheets, then I can slip baked goods onto the counter and a new sheet with raw dough onto the sheet and pop it back into the oven faster. No lag time between baking and I don't need to get my hands dirty very 13 minutes.

I tested three different sizes for the cookies. A 1 tablespoon dough ball makes a normal-size cookie, and was more on the soft side. A 1/2 tablespoon dough ball, made a small cookie, and would probably work just fine for most people, but I really wanted them to be "one bite" cookies so there would be less of a chance of my kid taking a bite then dropping the rest. I settled on a fat 1 1/2 tsp. So I just scooped up batter 1 tablespoon at a time and divided it into four little dabs. This made cookies slightly larger than a quarter, which was perfect for my family.

Bake cookies for 13 minutes at 350F, slightly less time if you want them softer; we wanted crisp. This recipe makes uhm, a lot of little cookies; it filled a 10 cup container.

I do not know how long these keep, they were finished within 3 days. Even my husband ate them (note to self: do not tell husband that muesli has dates or he will never eat them again). I have several other types of cereal in the cupboard, so I'm going to keep making different kinds until I can find the tastiest, highest protein, lowest cost, batch of breakfast cookies that my family will still eat. Once I figure out a few that work, my goal is to get a ton of cereal on super sale, then spend a day and make batch after batch of breakfast cookies, and freeze them in 1 gallon zip-top bags. I'm sure they will freeze well, since oatmeal cookies do. Of course the way my family mowed through them, it's possible I won't need to freeze any at all.

I have a lot to say

about the recent BBC news report on the findings of the General Medical Council who found Andrew Wakefield "had acted 'dishonestly and irresponsibly' in doing his research."

But before I write down all of my feelings I need to reread the actual report
find it here: http://www.rescuepost.com/files/facts-wwsm-280110-final-complete-corrected.pdf

because unlike those AofA people I want to read, and think before I speak.

but I will say, that this does not surprise me:

"The doctor who first suggested a link between MMR vaccinations and autism acted unethically, the official medical regulator has found."
BBC News

If You Don't Try, You Can't Fail

So I've been thinking lately that I have been holding back...sort of unwilling to unleash myself on the world,

because I don't want to fail.

It's not specific things, it's sort of a general feeling, though there are certain markers, like I haven't been writing as much here or anywhere. I just sort of feel stopped. or stunted. or hesitant. or unsure, or like I am playing it all a little too safe? (the picture to the left is Lucy when she was, uhm, 6 months old? *way* too young to be holding up a helmet that big, but Descartes title this photo "Safety First" and it cracks me up every time I see it.)

I think I have spent so much of my time worrying about Jake's school placement, that when he settled in to the Morgan Center so quickly I did not quite know what to do with myself last semester. As relieved and grateful as I am, I feel like I lost my footing. A little bit similar to the time in my life (13 years ago this week!?) when I stopped writing dark and dreary poetry because I fell in love with Descartes and I was so joyous, and found myself so enamored, bewitched, captivated and charmed by him that I had no room left for all that angst.

It's just a quirk, a little glitch, but I really do feel off kilter.

"Nobody in Life Gets Exactly What They Thought They Were Going to Get"

Descartes just quipped that it took Conan O'Brien leaving the Tonight Show to get us to watch it again, which may be true, but I do think he's a good guy, more in the vein of Johnny Carson instead of Jay Leno.

from his farewell speech last night, :

"All I ask of you is one thing: please don't be cynical. I hate cynicism -- it's my least favorite quality and it doesn't lead anywhere," he concluded. "Nobody in life gets exactly what they thought they were going to get. But if you work really hard and you're kind, amazing things will happen."

- Conan O'Brien, The Tonight Show, January 22, 2010

Current Curiosities

• how did I lose my cell phone case, but keep the cell phone?
• how did my house get this messy *while we were sleeping*?
• why didn't we start watching "Making Fiends" a lot sooner?
• why is Conan going off the air and Jay Leno coming back?
• why did I let a three year old learn about the joy of bubble gum?
• where is that bag?
• why won't my bangs grow?
• how did the Birthday Girl get on to the bar last night while wearing that dress?
• how am I going to entertain my children today?
  

Helping in Haiti

Our family donates to the Red Cross, Descartes having seen them in action when he lost his family home in the Berkeley/Oakland Hills fire.

They have made it very simple to donate. Simply text Haiti to 90999 to donate $10.00 to Red Cross efforts. It will be billed to your mobile phone bill.

I also received the following list of charities from Lucy's school. It was compiled by the National Association of Independent Schools.

• Mercy Corps
• Save the Children
• International Red Cross
• World Vision
• Catholic Relief Services
• UNICEF
• International Medical Corps
• Network for Good
• CARE
• Operation USA
• Operation Blessing International
• Convoy of Hope
• The Global Syndicate
• GlobalGiving
• Beyond Borders
• Network for Good

Hand, Hand, Frozen Fingers, Frozen Thumb

Squid interviewed me for this article about how children like ours handle truly cold weather.


1) How do your child's sensory needs color their response to cold weather?

Jake does not seem to notice hot or cold, generally speaking. If the covers fall off he curls into a ball. If he's hot in the summer he falls asleep next to his window on the floor. He loves the outdoors more than he dislikes the elements, and would happily play in our backyard well past the time a "typical" child would seek warmth. (This is a picture of Jake in our backyard in a little fish pond we no longer have because he would get into it whenever he had the chance no matter how cold it was outside.)

Because we have to be aware for him we try our best to clothe him in the most appropriate outfit for the cold. I try to wear a similar number of layers and fleece/wool combination so I can help gauge when he might be too hot or too cold. We spend hundreds of dollars each year to get him the new size of snow overalls (bibs), snow boots and gloves. Of all the children in the (extended) family, it is most important to get Jake's outfit right, since it seems to make or break any snow event for the rest of us.

If Jake is not comfortable he will whine or drop to the ground repeatedly until we remove him from the situation or correctly diagnosis his need. Once we figure out the problem, he will generally have a little more patience for us to fix the problem, but if we don't he lets us know he's done.


2) Can you relate a particularly memorable, related incident?'
My family loves to ice fish, and even hosts an ice fishing even each year (you should come... it's great fun!). To get to our favorite lake there is a very short hike, perhaps 30 yards up a berm and over the edge, then there is just a large bowl of flat easy walking. It seemed simple enough, and we really try to do things as a family so we all ventured out. We had a complete outfit for Jake top to bottom, he was even amenable to hats then, and really the only thing that wasn't quite working were his boots. They were just a little bit too big. This would be manageable for most kids, but Jake also has low tone so every step he took his little foot popped out of a boot. Then Descartes tried to carry him, and every other step, a hat, or a glove or a boot would come off. It was mostly funny, but so exhausting. Luckily my husband is strong enough to carry Jake, and we are smart enough to carry extra socks. Jake recovered eventually, but he was so frustrated the day was cut short. (I am pretty certain this is a photo from that day.)

3) Have you had to modify your family's routine or lifestyle (or location) because of your child's response to cold weather?

We have realized over the years that Jake is happiest with 20 acres at his disposal, his parents watching from a distant perch on the porch of a log cabin. Since we no longer go to Montana every summer (why can't everyone else just stay married dammit? We did!) it is a bit harder to find a free range outdoor spot where we can see him and keep him away from traffic. Luckily my sister lives in South Lake Tahoe, with a large back yard and acres of woods behind her house.

Descartes and I made a plan several years ago to move to Tahoe. We love it there: supportive family, beautiful scenery, reasonable cost of living (compared to the Bay Area). We researched available businesses for sale, did due diligence on a sporting/outfitters store and began looking into financing. We started talking about selling the house.. the whole deal. We went to Tahoe on a Friday night, giddy with our plans, sipping wine and laughing with my sister and brother in law about the great life we would have. In the morning, after a fresh snowfall we went to play in the backyard. We bundled our tiny new baby in a bunting and set her on the snow. All wrapped up she giggled and watched as her brother ran around the yard. Watched as he flailed and tore off his hat, and his gloves and hopped out of his boots. We got his boots back on, eventually. We ended up duct taping his gloves onto his jacket with his hands sort of stuck in them. I'm not sure he has ever worn a hat since that day 3 years ago.

When the gloves came off again we were done with the whole thing. Exhausted, we stripped Jake down inside the house and realized that we could never live in a climate any less temperate than the Bay Area. Overnight lows in the 30's perhaps, but winter days in the teens? Though the benefits of family support were so tempting, the idea of epic struggles every single day just to stay safe was just too daunting. If not winter and gloves there would be summer and sunglasses. Tahoe kids wear gloves half the year, and things like hats and sunglasses year round.

We were very sad. It is hard for us to admit defeat; we make plans and we execute them. We don't know what our family would be like without autism so we just keep plowing on making choices and dancing through this life, and most of the time we are happy and strong, but sometimes we are stopped. Of course we could make it work, living in a place with "real" seasons, but would that be fair to Jake, being tortured daily for months on end? Would it be fair to his younger sister to have to wait 20 more minutes each day while we get her brother dressed, the little girl who already has to "wait", "hold on!" and "be patient" constantly?

We still play in the snow, but this New Year's day we played in the front yard, as close to home as we could be, and instead of wearing gloves Jake just went inside every 15 minutes or so and got warmed up. Sure we missed the big sledding hill, but we made a cool snowman and an ice fort, and all of the kids were happy, which of course, kept all of the parents happy too.

Past, Present, Future

Randomly, in the car, on the way home from school today.

Lucy: "What does 'future' mean?
me: "Well, yesterday is the past, today is the present and tomorrow is the future."
Lucy: "okay."
me: "So tell me something you'll do in the future."
Lucy: "Eat ice cream, after dinner."
me: "Yep. And what did you do in the past?"
Lucy: "I learned how to walk."

She is the most interesting little creature.

First there was Hawaii... No, It was Santa Lucia?

So there was this whole "Holiday Season" thing, which made me realize a few things:

I am incredibly blessed, and to find myself going from Honolulu's 82 degree sandy beaches to the shores of Lake Tahoe all in a two week period? That is truly amazing. To the left is a photo of Mokolii in Kaneohe Bay. We went on a little driving tour to get Lucy to take a nap.

I love my family. I was able to see 4 out of 5 siblings, and their spouses and children. Plus all sorts of parents. We are really all over the place on many topics, but one thread that runs through each of us, no matter which side, is humor. We are a funny bunch. There isn't a stone face among us. I have laughed and smiled so much lately, and for that I am grateful.

Life really is more relaxing when there is a mai-tai in mommy's hand.. or daddy's or both.

Descartes and I really like each other. We enjoyed each other's company when we were alone and when we were with my family, and I cannot think of a single disagreement we had then entire holiday break. Now this afternoon was a whole 'nother story. just kiddin'.


I don't ever need to swim with dolphins ever again. They were cool and all, but after Lucy got bonked in the head (I cannot upload the video clip right now, but I will someday.) I decided that it is sort of like horse back riding for me. I could probably be convinced to do it again, but I will never seek the adventure out on my own (unless I am taking a pack mule into the Grand Canyon, and then, that's a pack mule). That's Lucy being cross-eyed pointing to where the dolphin bonked her, but really the dolphin bonked her on the left side of her head just below her temple. By the way that is a really *really* awful sound to hear.. you know the sound of a 500+ pound animal bashing its head into the skull of your youngest child.

Lucy loves all things dolly and girlie, but she will take. you. down. in a wrestling match. She is truly turning out to be the kind of little girl I hoped we'd help grow. As much as she makes me crazy, she is full of spunk and vigor and beauty and compassion. In Hawaii she kept up in the pool and on the beach with her cousins, all older. She glammed it up with sunglasses and sundresses, but had no trouble covering her entire body with sand, rolling about in its warmth. She was a joy to watch. She had a very hard time when all the slumber parties were over.




Jake still really loves off-roading. We went off-roading at Kualoa Ranch and were lucky enough to have an entire Pinzgauer to ourselves. Jake was so happy. Lucy loved it too. The best money we have ever spent in Hawaii. I love hearing Jake laugh. He's been laughing and smiling so much lately. He won "best grandkid" in Hawaii, due to his complete lack of crying or tantrums, unlike the other munchkins who each had to be reminded at least once that there is "no crying in Hawaii." He received a lot of praise from my parents and I could tell it made him happy. He was a great kid on the plane both there and back, and of course he loves our drive to Tahoe.


We need to buy a small camera. We borrowed one from Descartes' daddy, but it busted itself up half way through the Hawaii trip. I may never get the photos off that card.

I realize the more fun we have the less photos we take... or I take at least. I had my camera in my hand the entire time on the off-roading trip so it wouldn't fly away, that's why we have so many from that day, but I really had a great time for two weeks, and the thought of taking out and caring for a camera seemed too much a barrier. I was actually being with my family in the present.

We came back from Hawaii, unpacked our shorts and threw in sweaters and long johns and went to Tahoe the next day? the day after?

For New Year's Eve we somehow convinced Nonie and Bob Bob to watch all four of our children and Jaster, Demanda, Descartes and I went to downtown South Lake at State Line. I cannot remember the last time I laughed that much in a single night. We played Taboo! for a long time and I'm not sure why but it turned my husband into the most hysterically funny super competitive crazy person. I'm sure the cocktails helped. Next year we are going to send the grandparents to the hotel with the kids and stay at home with the hot tub, the kitchen and the Wii. It was a great way to begin a new year, laughing. And while I had a lovely NYE last year with Squid and Seymour, I must say it was great to wake up to room service and working plumbing.
(I spent New Year's day 2009 cleaning out the pipes in front of my house... so not awesome.)

We drove down to Cabella's in Reno one day with all of the family in our Adventure van... so cool to have the whole family in one car like that. I sat in "the mommy seat" which means I handed out crackers and juice to all 50 kids. Nonie sat in the last row. She gets carsick. We laughed a lot. Our children took over a 125000 square foot store with no problem. At one point I am fairly certain they gave my sister 100 tokens for the shooting arcade if she would get the three, three year olds out of the ice fishing tent displays.

The weather in Tahoe was beautiful. I love it when we are trying to get kid to take a nap and we can take a little jaunt up to Emerald Bay. That's Fanette Island in the photo. The only island in Lake Tahoe.. and I get to see it when we are just cruising around. jeesh. I am so lucky.




My many many thanks so Grandpa PJ and Grandma Corky for the lovely trip to Hawaii and to Jaster and Demanda for hosting us in Tahoe.