We are Packed

For the first time in the history of our family we were packed nearly 24 hours before our departure time. I think other people live this way all the time. Those are probably the same people who have centerpieces, and welcome mats.

I have decided that I will make a checklist for our weekend Tahoe trips so I can experience more of the peace that comes with being all zipped up this many hours before we leave.

I am still trying to finish my work, but it is looking like I might still have some to do Monday night. The good news is that Honolulu is 3 hours earlier, so I will gain more time to finish. Just occurred to me I should stop writing here and get reading over there.

Next stop The Royal Hawaiian. Maybe I'll post from here:

Hurry Up and Celebrate...go go go go go

• Sort suitcases and realize that even after purging we have enough for each member of the family to have three of their own.. including the dog. We keep buying new luggage because the old ones are worn out, but we don't get rid of the first ones.
• color hair (me only) again. and again when that color is no good. and probably one more time because in my quest to save money (hello $250 at the salon? whatever.) I have now spent 8 hours and $100.
  
• clean up all of the Christmas cookie mess. Did I really use 40 cookie cutters?
• make bacon, because everything is better with bacon.
• send husband for haircut. Barber needs a weed-whacker.
• buy disposable gloves for all of the nasty things I must deal with in a small airplane bathroom.
• make Lucy try on all of the clothes I bought her in July praying they would still fit in December, because there is no place to buy clothes for 80 degree weather in December if you live in Northern California.
• Print out Christmas card address list and make address labels. Christmas cards are being FedExed to Hawaii because the company screwed up and mailed me 500 coupons for a diner giveaway in Minnesota instead of my Christmas cards. Don't forget to bring the stamps. Have forgotten where I put stamps. Happens every single year.
• buy birthday card for good friend... fancy pants dinner party tonight.
  
• clean up the dog poop on the side yard.
• clean out the car.
• complete two days of work in one day or plan on using laptop at MaiTai bar on Monday.
• brush my teeth
• try on every summery outfit I own, lament lack of discipline in sticking to exercise regimen, pack clothes even if they are a bit snug. They will magically fit in Hawaii, and I am not buying anything else for this trip.
• Pack Christmas stockings. Santa must not forget the children.
• Be thankful we have friends who will drive us to the airport at 6:15am on Monday morning.
• clean house
• take out trash
• make to-do list for house sitter
• remember to take the chargers for the phones, the camera, the laptops, the wi-fi card.
• remember to smile because my life is wonderful.
  

Shattered

Lucy just spotted a shattered glass in the china cabinet. It's really surprising it's taken this long to have something break in there considering the fragile contents, and the fact that the china cabinet is still standing at all is rather amazing since it is seems to be in the direct path of most children who visit the house, and is on Jake's twirly evening path when he starts doing laps around the upstairs.

The china cabinet has been in my family for years and years. I think I am at least the fourth generation to have it in my house. It's filled with tea cups from my great, great aunts, and old keys Descartes and I found in a flea market in Nice, and a dashboard hula girl I use to determine whether we've had an earthquake (is she shimmying?), and a raku duck from Canada and the champagne glasses we used to toast our future on our wedding day.

It was one of those beautiful Flutes that must have fallen over last night when Jake used the china cabinet as a football training sled. It fell on to a rocks glass of unknown origin, and cracked the smaller glass into multiple pieces of jagged expensive lead crystal.

I found the key to the old lock in a bowl on top of the cabinet and opened up the doors. Lucy was so excited to see inside. I showed her the artifacts of my life while she held the little key to the cabinet. She ran her little fingers over hand blown glass, and we talked about the words "mementos" and "keepsakes". We talked about champagne and raku ducks, and caring for things so we can pass them on to the next generation. Then Lucy dropped the key into a little toy bucket that happened to be on the floor near the cabinet.

"We can put the key in there mom, and Jake will never find it because he's not smart."

My heart shattered. I got tears in my eyes and a lump in my stomach.

She knew by my face she had done something wrong. She immediately asked to "stop playing glasses and eat some pancakes." I asked her to come sit with me for a minute to talk about what she had said and she didn't want to. She was visibly uncomfortable.

I wasn't angry, I just wanted to talk with her. I know children are mean to each other all the time. My brother called me stupid and ugly, and many other nasty things when we were tweens and though it is extremely rare now, I'm sure he's called me a bitch more than once in the last ten years, and I know he loves me. I know we say mean things about each other all the time, but Lucy has never made a comment about Jake's disabilities except to tell Grandma once, "Uhm, hims doesn't talk so much."

So I convinced her to sit in my lap, and I asked her to not ever call her brother stupid again. She got very defensive and said, "I did not say he was stupid, I said he wasn't smart!" Which shows you exactly how I heard the words. Which of course sent me down a rabbit hole worrying that I had actually added negative vocabulary..blah blah blah.

and so I gave her a quick couple sentences... "We don't always know how much Jake knows because he has a hard time communicating with us, so it's possible, indeed likely, that he understands a lot more than we think." and "There are going to be people out in the world who are not going to be kind to our family or to Jake because they will think he's different, but you are supposed to be on his team, so please don't ever say words like that again."

and innocently she said, "I'm sorry mommy, I just wanted to hide the key so Jake wouldn't get into the cabinet and hurt himself on the glass."

AdventureVan

We had a big weekend after a sort of harried week, running around trying to prepare for this big weekend. We called banks, moved money around, photocopied and faxed papers and made a zillion phone calls. We oiled, smogged and waxed and wiped, then packed and drove to Tahoe, and everything went exactly as it should.

Our family loves a good adventure. We plan well, and try to account for most contingencies, but the story is always better when things go wrong, as long as those things do not interrupt sleep or safety. In an effort to thwart those particular types of problems, and with great hope that we will be able to have Jake and Lucy experience as much of this country (continent?) as we can help them experience, in spite, and a bit because of disability, Descartes researched, and we just bought this weekend...

AdventureVanthis really is a photo of our van with Lake Tahoe in the background.

Sorry that this "MonsterVan", as little Hawk called it, has only this small picture to post so far. I have yet to photograph the entire thing myself. This van will allow us to go camping with Jake and know that he will be safe at night, locked in tucked away and cozy. It has 4-wheel drive, so we can set up camp in locations that are more off the beaten path, which generally means farther away from other people and their cars. We can keep Jake safe in the woods, near bodies of water, cliffs and rocks, but it is nearly impossible to protect him from careless drivers in campgrounds, or the evil scowls from neighboring campers when he is hooting and hollering with happiness.

AdventureVan is gigantic, seats 12, has a pop up top to provide a sleeping area, and provides our family with the comfort of being able to carry everything we need.

Descartes spent a lot of time researching these types of vans. He actually told me he started to look when Jake was only 3 or 4, after he realized that our family's camping experience would probably need to look a bit different than what camping looked like when he was a child. The first thing we had to do was trade our beloved LandCruiser, but I know it was time to let it go (notice the mileage on the odometer over there). We took some great trips in that car, and it was the first major purchase Descartes and made together after we were married. I stepped outside the house just as the new owner of the Cruiser was starting the engine, and I was suprised to have my eyes well up. I know it's going to a good home, a Daddy and his two beautiful girls. We all ended-up with what we needed.

As soon as the papers were all signed and keys traded, we put in all of the car seats, noting how easily they all fit across the bench seats. We put Wolf, Hawk and Lucy across the back, Jake had his own row and Jaster and Demanda sat in the front bench. We enjoyed lunch at one of our favorite Mexican food places, Taqueria Jalisco, where the seating is easy and the customer service is kind and the food is delicious. Then we made Descartes drive us all around and all the way to Red Lake
Jaster and Descartes did a happy dance on the banks after they discovered that the lake is indeed frozen over, and already shows signs of ice fishing, with 3 or 4 holes drilled already. I smiled happily because the children were all asleep (except Jake of course). A happy, driving, napping van. Descartes guided our crew back to South Lake through a snowstorm.

Our first big trip will probably be to the Grand Canyon, but we will put the van to good use before then. I'm hoping for a grownups only trip to the wine country. It needs to be vacuumed and spit shined a bit, but it is so cool and the kids love it, and my husband is happy. The kind of happy that I haven't seen sustained in a while, and it looks good on him.

We made a good choice.

Who ARE you?

Jake's face is so bruised from his fall that the facial recognition software on mysuperMac doesn't know who he is.

It is less black and blue in some places, and more in others. It is ugly.

Jake's precious teacher called me yesterday and suggested that since his Motrin had probably own off, perhaps I should pick him up from school...and so with Squid's two daughters already trapped in the car, we drove all the way to Wunderskool to get Jake. He was so happy to see Iz and Mali that I think he forgot about his nose for a bit. In fact, I swear I saw him blush when Iz said she liked his shirt later when we were in the car.

After Mali convinced a stranger  her new best friend, Jake's teacher, to open the bathrooms so she could go, we all piled into the car and went to Lucy's school. We were quite the entourage, with Mali skipping ahead, Iz chatting chatting and Jack lagging behind trying to shake me off of his arm while he wandered at his own pace, swollen-faced and silly...then we added Lucy.

It was a herculean effort to get them all off the playground, but the promise of Dairy Queen had ALL of them clamoring to the gate and heading towards the car.

Dairy Queen went so smoothly that I actually said out loud to Iz that I sometimes wished I "had this many kid."

Don't worry. Not. Gonna. Happen.

Doesn't that Hurt?

Jake is on his way to school now, the van slowly winding its way down the Peninsula until coming to rest at his personal oasis, WunderSkool. The doors will open and one of the precious, talented and caring aides will greet him...

and this morning they will gasp. Jake has a big old broken nose. It's so ugly that I haven't taken a photo, and probably won't post it because it will require a disclaimer.

Here is my artistic attempt using a stock photo from Adam:


It didn't actually happen on my watch, and for that I am grateful. Doesn't that sound awful? I just worry all day every day that something terrible will happen to my children, something that I could have prevented had I just been parenting a little bit more diligently.. well this is one of those times when I was not even in the building... so phew... Somehow I am perfectly aware that accidents happen and have no blame or harsh words for anyone else should my child be injured in their care, but, in my typical style, I have very little forgiveness for myself should something happen.

Okay since this is not all about me... poor Jake.. Descartes got the bleeding to stop fairly quickly, and Jake was never crying or upset at all. He just doesn't like to hold still. By the time I got home a half hour later Jake was playing and laughing and his head was swollen and turning colors. We gave him some motrin. He went to bed.

We haven't had a major injury for awhile.. not since the nail in the foot? Does that mean we had an injury-free summer? I know I'm missing something.. oh there was the time when he badly bruised his gentleman's region.

But whatever amount of pain he may be in he was sure ready to go to school this morning, waiting at the door again, and hiding his face from me when I said, "Let me look. If it's too bad maybe you shouldn't go to school." He said, "Aw Maaaaw, " and laughed and ran away. Okay fine. Go. GO to school... then I can just sit here and wait for them to call me to pick you up.

So I decided to be proactive. I just called school and warned them. His lovely teacher said, "Well, if there is any fresh red blood I'll call you and we can talk, otherwise if it's just old blood...it's got to go somewhere, so that's fine. Have a great day."

okay then...

Sleep Perchance to Dream

I should sleep. My babies are sleeping, my husband is sleeping, the dog passed out hours ago.. and here I am awake and so.. I will post a few photos:

Here is Lucy loving Leelo's 9th Birthday party.

Mostly because she got to wrestle all over her Daddy with one of her best friends Mali. Descartes is a very nice Daddy.

Jake had a great time at the party too. He even went into a jumpy house all on his own without any pushing or cajoling, although he preferred lying on his side and having the birthday boy's daddy talk to him through the netting. I think Jake likes all of the vestibular stimulation of a jump house (autism) but dislikes the feeling of instability (cerebral palsy)... kinda sucks when your comorbids are in conflict with each other. He usually spends his time at jumpy house parties trying to get behind the giant slides to see the blowers.

Over all we had a great time at the party. Lucy was over tired, but generally, it is always just so nice to be with "our peeps". We can really be all of ourselves with this group of people, and I think we all co-parent very nicely, providing hugs and hair tousles and chasing random kids back into the room if they have escaped down the hall, praising one special needs kid for helping out another "more special" kid.

My children feel safe and happy with these people, so Descartes and I do too. It's also nice that there is a mix of kids; boys and girls and age ranges and neuro-typical and non-typical development (way to go Rosenberg's for having a great group of friends!) .. and p.s. the staff that was working this particular day was very helpful and actually acted like they liked us, and our kids... and we were not a distraction from their lives. They worked hard and smiled and showed patience for our children.

It is just so great to see Jake laugh and smile again. It's like we have our boy back after 2 years. He can go to dinner (twice this weekend), experience new routines, open doors, laugh at his sister. He is growing and learning. I think school is going so well, that even though he may be starting "an episode" I think he is handling all of it so much better with the support and structure of school and the happy parents at home, that one dose of Maxalt may sweep whatever brain aches are starting to appear. I asked him tonight if his head hurt and he made this weird face, not a yes, but not no either. He's been doing I Dream of Jeanie squints for yes.... but he was trying to answer me. We are going to get there, a little bit at a time.

It just feels like we are on track right now, except for the laundry and the dishes, but those things are every day (all day!)... right now we are even keel, able to take on a smidgen more work or study...or perhaps a touch of relaxation?


Every once in a while it feels like we are all okay, and it's alright to rest for a moment,

and dream, just a little bit.

and with that, I am off to bed.

My Own Little Symtom Checker

With one reported case of H1N1 (that I know of ) at one of the kid's schools, it is no wonder that I wanted to be certain of the symptoms...by the end of my reading I was sure I had it without getting up from the couch. From some time last week:

H1N1 Symptoms from the CDC website	“It’s that time of the month, and this month is worse than others” Symptoms or "Wait, Am I Pregnant?" Symptoms	“You have two children, who without a doubt are the most precious things alive on this entire planet, but it’s possible that the term “It takes a village” was really just talking about raising those two kids” Symptoms"
fever *It’s important to note that not everyone with flu will have a fever.	put your sweater on then take your sweater off. Repeat all day long. or slightly elevated body temperature	sweaty brow
cough
sore throat		hoarse voice
runny or stuffy nose
body aches	body aches	body aches
headache	headache	headache
chills		chills, because even though everyone else in the family is wearing a jacket you were running too late to go back in the house and get yours
fatigue	fatigue	fatigue
sometimes diarrhea and vomiting	vague nausea	nausea caused by eating the wrong foods quickly

Today We Honor Those Who Serve

Do you know how amazing it is that I even exist?

My mother's father was on the shores of Normandy that June day in 1944. They called him "The Old Guy" because he was 31 years old. We called him Grandpa Vic, but his given name was Joseph Victor Aloysius Bell, and he lived through that first wave of soldiers who hit the northern coast of France on D-day. He was a radio guy, a Tech5 which is a corporal I think, and he apparently connected calls to General George S. Patton many times.

My mom says he didn't tell many of the bad stories about war, only the interesting ones (watching three beautiful girls walk arm in arm on the streets of Paris, each with a different shade of hair: two of which were blue and red). He shared with my mom only one story that was not all rosy: Their unit had been bombed heavily, and one (very) young man was shell-shocked, crying, screaming- hysterical. Apparently my Grandfather slapped the young man across the face then rocked the lad in his arms like a baby until he finally calmed down much later.

Most of my memories of Grandpa Vic need prompting; he died when I was in third grade. I do however remember the smell of his pipe, and the neat little cabinet he had to put his pipe and tobacco in. I remember his sparkly eyes and handsome smile. My brother has inherited his beautiful wavy hair that looks combed all the time, and a body that always looks strong.

I may not remember that much, but I do remember he loved my mom. He loved her so much that I can recall the way he looked at her and spoke to her. I know that feeling now that I have my own children: he loved her like he was amazed she existed, every time he looked at her.

I honor him today, and my great grandfather Jack who served in WWI, although I suppose I should remember them officially on Memorial day since they have long passed from this life. My "Unka Dunka" who served in Desert Storm and whose body has never quite recovered from his injuries there, still soldiers on, soldiering from such a young age. He's retired now, but still wears that same haircut I'm sure.

Thank you Veterans. Thank you.

Not in Any Particular Order

• I heard a story of transformation last night that brought me to tears. I have said many times about how different the road ends up looking when you have a child with special needs. Sometimes, many times, nothing looks the way you had envisioned your future, not the number of children you decided to have, or the kind of home you thought you'd live in, or the travel you thought you'd take, or the career choices you would have made, or the activities you thought would occupy your time. Most of the changes in our life are for the better, or have made me a better person, and the woman who spoke last night shared her journey of youth to adulthood, to parenting, to special needs parenting, and ultimately to a place that is taking some of those dreams and hopes she had as a young woman and moving the pieces around so that some of it will work again in this so-different life she now has. It was inspiring, and courageous and a joy to witness. I hope each of my friends has a similar reawakening.
  
• In our own corner of the sky, Descartes has been researching "adventure vehicles" or at least that's what I am calling them. They look a bit like this or like this.
  Could be the perfect way to go camping with Jake and Lucy. We aren't gonna be the family that takes a year off and travels around the world with the kids. As adventurous as Jake is with trying food, I don't think he would be happy with that much constant change. Maybe Lucy and Mommy can take a few adventure trips out of country when she is older, but we need to figure out what our family looks like if it doesn't look like all of the things Descartes and I planned. Off-the-beaten-path camping might be a happy thing.
  
• Descartes and I have sort of decided that we are going to try to take our kids to as many National Parks as they will tolerate before they start leaving home. Descartes' family was sort of a road tripping family, and while I think my mother would rather eat dirt than sleep on it, we did our share of National Parks when I was a kid too. As a family, we've already been to Point Reyes, Muir Woods, Golden Gate, and Yosemite, and Jake has also been to Fort Point, Alcatraz, Pinnacles, Lassen, Yellowstone, and Grand Teton. In fact, Jake took some of his last baby steps right on the boardwalk next to Old Faithful. The day we got home from Montana he walked by himself across the living room (he was two)
  
• For some unknown reason a subscription of Golf Magazine recently started coming to my house. I canceled it this morning. Some marketing company did a very bad job determining my behaviors.
  

Forward

I am not much for forwards.. in most cases I immediately go to a Snopes-type website and send back the link that "proves" that onions do not ward off the flu, no, Michelle Obama does not have the most staff ever for a First Lady, and the ACLU is not about to remove cross-shaped headstones from federal cemeteries. In reviewing the over 11, 700 emails in my Gmail inbox, a search for the term "Fwd:" returns "thousands" of entries. I got as far as 1,900 before I decided that I did not need to know the actual number to prove my point. They are mostly from less than 7 people: 4 of them are family. Back when I worked in an office for a 40+ hour a week job, when the computer was not my own, I actually asked two of those people to stop sending forwards at all because I could never guarantee that the contents of their emails would not be overtly sexist, racist, homophobic or some other less egregious form of fodder for firing me from my very politically correct company. I could not delete some of those emails fast enough, and not just because I did not want to get caught, but because I did not need to have "that kind of stuff" in my head. I don't think most of it is funny, or even amusing, and because of the way my memory works, some things get seared in there forEVer. The movie Seven *really* did a number on me.

But today my mom sent me a link titled Random Thoughts, and I thought, hmm that's a list I might write myself, kind of, well, maybe not, but I kept reading the email. It's not some amazing thing, don't get all excited...

1. I think part of a best friend's job should be to immediately clear your computer history if you die. (now luckily, I am not doing anything illicit, or at least not anything the most conservative person in my family would be that upset about.)
   
2. Nothing sucks more than that moment during an argument when you realize you're wrong. (this never happens to me hahahahahahahahahahahahahah)
   
3. I totally take back all those times I didn't want to nap when I was younger.
4. There is great need for a sarcasm font.
5. How the hell ..... are you supposed to fold a fitted sheet? (as it turns out, I do know how to do this. Here is a good place to learn how if you don't know. Yes, I just put a link to Martha Stewart in my blog post.)
   
6. Was learning cursive really necessary? (I think it is sort of sad that the human race will eventually forget how to do this, because when you write things down with your own hand it is harder to ignore what you are saying and how it might hurt someone.)
   
7. Map Quest really needs to start their directions on #5. Pretty sure I know how to get out of my neighborhood.
8. Obituaries would be a lot more interesting if they told you how the person died.
9. I can't remember the last time I wasn't at least kind of tired. (I am actually trying to track this a little bit. Here is a good place to make your own challenges for healthy living.)
   
10. Bad decisions make good stories.
11. You never know when it will strike, but there comes a moment at work when you know that you just aren't going to do anything productive for the rest of the day.
12. Can we all just agree to ignore whatever comes after Blue Ray? I don't want to have to restart my collection...again. (Now that we have children we have fallen off the early adopters program and get teased *before we even leave the store* about how smal our flat screen television is.. thank you Sage's husband, Pops!)
    
13. I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten page research paper that I swear I did not make any changes to.
14. "Do not machine wash or tumble dry" means I will never wash this -- ever.
15. I hate when I just miss a call by the last ring: Hello? Hello?, but when I immediately call back, it rings nine times and goes to voicemail. What'd you do after I didn't answer? Drop the phone and run away? (this is actually my brother's biggest pet peeve)
    
16. I hate leaving my house confident and looking good and then not seeing anyone of importance the entire day. What a waste.
17. I keep some people's phone numbers in my phone just so I know not to answer when they call. (I am not this evil..ever, well, almost never...)
    
18. My 4-year old son asked me in the car the other day "Dad what would happen if you ran over a ninja?" How the hell do I respond to that? (with Lucy we get questions like: Who will I live with when I get older? How will I know when it's time to live with someone besides my mom and dad?)
    
19. I think the freezer deserves a light as well. (actually, my freezer does have a light, and a seat heater and a moon roof. This list writer must have the next version down from mine. That always happens to my dad. If he did buy the version with the light in the freezer, it would malfunction and melt everything in the freezer, or his moon roof would leak and ruin the upholstery.)
    
20. I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lites than a "K". (I just recently understood this commercial, having heard it for years and thinking they meant, literally, "every kiss begins with Kay". I thought that was a sad statement that it took jewelery for anyone in the world to kiss... what they meant was the play on words that "every kiss begins with :K:" the letter duh. the word kiss begins with the letter :k: AND the jewelry store Kay Jewelers begins with the letter :k: Uhm yeah.. I am still a bit stunned how not smart that whole thing makes me feel.)

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

In other news, the book My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities has just arrived at my house. My dear Squid and I each have a piece in this amazing book. I am so honored to have been included amongst these very real stories. My mom just called and told me it is a "box of Kleenex" kind of book, which makes sense to me since she is Grandma and can't "fix" anything for anyone in this entire book, including her own daughter's life. I have developed a small part of me that has grace (it's still really very small, but I am trying). This part of me feels very badly for my mom, and others in her position. They grieve once for their children, and how hard their lives have become, and they grieve again for the disabilities of their grandchild, and all of the dreams they had to do those grandparent-type things like take a child to her first opera and take a jaunt on an overnight train and go to Paris (okay I was lucky.. those are things I did with my grandmother). I haven't read very much of the book yet as I have been trying to organize my time all over again having added a new regular work gig to my already pressing desire to be a good parent and better-than-mediocre wife while attempting to not epic fail as El Presidente of the Special Ed PTA. It will all come together or it won't, and the book will get read in the car at stoplights and on trips to Tahoe I suppose, but I am very excited about it. I ripped open the package and read Squid's entire story. She is really a great writer and I am more than flattered that part of her story is about the time we first met. It is a rather precious story, and when I am reminded of it it makes me smile and be so thankful for this wonderful community.

**********

We're good. Can you tell?

Being Neighborly

There was a knock on the door last night, just as I was about to bring Jake in from the back yard and serve him up some dinner.

When I opened the door I saw two people who looked vaguely familiar, like I had met them before, even spoken with them, but never been this physically close to them.

It was our neighbors-our new neighbors, who I have only really seen over the short fence on our side yard. It's possible I have only ever seen the husband perched on a ladder.

They were standing there, smiling at me from the front porch, which is only used by Mormons and the UPS man, staring into my downstairs hallway, which doubles as a dirty laundry chute from the stairway that leads to our kitchen, and the rest of the public spaces upstairs. Upstairs: public space. Downstairs: our den. I don't mean a t.v. and plaid couch sort of den, but a lair sort of den. Some friends of ours have probably never even been downstairs. It's where we sleep and do laundry. We nap and have pillow fights, and watch the fish in the tank, but that's about it for the downstairs. Over a thousand square feet of den, private sanctuary. It is also a disaster with boxes and bags of clothing our children have outgrown and shoes that don't work for anyone in the family, unmade beds and pillows askew from those weekend pillow fights.

So I quickly I invited them upstairs, with their sweet plate of cookies (didn't they just move in? wasn't that my job?) and surprised the heck out of Descartes and thrilled Lucy with our guests. I announced that this was actually all much better that they had stopped by unplanned, because if I had ever waited to feel like my house was clean enough for neighbors...especially new neighbors.. then they would never see the inside of the place. We sat in the living room and chatted while Lucy annoyed enchanted everyone with her antics, and Jake played in the back yard.

They are a lovely couple, perfectly friendly and nice, and distantly work-associated with a dear friend of ours, so practically vetted as well. They bought the house from a misfit son and his estranged brother, who unequally inherited the house from their recently deceased mother. The house was sold in haste and not well-maintained for at least 20 years, so consequently these new owners have been doing a lot of work fixing their first home. They are outside all the time; in the back, the front, the driveway. They walk their dog. We are not used to young (our age) neighbors. They might want to be friends. They might come over again.

I'm not sure why that is such a strange idea for me. I grew up in a neighborhood, with neighbors. Everyone had open doors and kitchens with different types of food being served depending on who the mommy was: ruglach, home made tortillas, or Hostess cupcakes, or seaweed and rice rolls, and everyone had KoolAid or Country Time lemonade. My mother walked every day with one or more of her girlfriends, her neighbors. I think I was in every kitchen or living room on our 28+ house lane save for one. Even crazy Margaret with the 14 poodles invited us in once for candy. The POW and his wife invited us into their garage, which was essentially their living room, for Popsicles, and it turns out Daniel's dad was not a Russian spy, they were just a family from Russia, so once that got squared away we went their too. Every mom knew who every kid was, and everyone had each other's phone numbers.

So what's my deal? Maybe I've gotten used to our privacy? Descartes made us live on a hill, so the houses are all bit off set, and as I said earlier, our front door is not often used since it is two full flights of stairs from the sidewalk. Maybe this is the last step in being a grown up, as if the mortgage and the life insurance and the two kids and the Desert Sand Mica Not-So-Mini Van were not enough, maybe having neighbors, our age, next door, being all mature and responsible with their yard work and their car washing and their furnishings that match (although I actually don't know this to be true) maybe it just makes me look a bit at our own life, and it makes me a wee bit uncomfortable.

I so do not have it together. Not. Even. Close. I think I was just starting to be okay with that.. you know, take small steps towards together but not sweat it so much.. and then poof, here they are, those neighbors, with their precious plate of cookies and their kind smiles. Can you believe I'm moaning about nice neighbors? Especially considering we have the not-quite-committing-any-crimes, still-falls-into-the-mischief-category family across the street, using band saws at 2am and helmetlessly riding mini-bikes up and down the sidewalks. What a whiner I am.

The cookies these kind new neighbors brought last night are almost gone, my children saw to that, so I need to go figure out what I am baking to send back to them on their plate. I think that's what a good neighbor would do.

Time for a Good Cry

the car hydroplaned no less than 4 times today

with kids in car
hours I spent driving on a flooded highway

and I dodged cars who swerved into my lane from the left
and the right

sheets of rain
rivers across the lanes and at every intersection

60mph gusts of wind

and the f*cking parked car got me

Just Glue It

I know I am a bit accident prone. There are a number of reasons...impatience, more things to do than time to do them, over-confidence in ability, taller/bigger than the average person (I'm 5'11 so I don't fit as well, into cars for example), and of course the genes I came with that wire me more for a nimble Scrabble game than world class goal tending. Still, after all these years I am surprised when I see blood dripping off my left hand (it is always my right hand attacking the left...perhaps my right hand knows I'm destined to go to hell and is trying to hack off the offending parts?) I get irritated when I run into things, or worse when I find a giant bruise and can't remember where I got it because I have run into so many things that day. So there I was again, sewing shears in right hand and blood on my left, dripping onto the fabric below. *fanTAStic*.

I took a strip of clean t-shirt that was destined for the rag bag (I had just actually cut it into pieces not 5 minutes before) and tied it around my finger, checked on my son who was playing ever so nicely out on the deck. Then I sat down on the bed and cursed a blue streak. (hmm I've never actually used that phrase before).

I called Descartes and asked if he could work from home so I could avoid taking Jake to the doctor with me... this story starts to bore me here, but let me just say that I made an appointment with a doctor in an office for a time that worked that day with childcare, Lucy pick up and our dinner guests.

I got a call from the advice nurse, who wanted to know the size, shape, number of blood droplets currently falling etc. Then she told me I needed to go to Urgent Care. I assured her that I was all taken care of, having smartly made an appointment with a Medical Doctor. She deflated my triumph with this lovely moment, "We can't do sutures in the doctor's office."

I'm sorry. WTF? I bet I could drop a few stitches in on the side of a trail, with a regular needle and dental floss (but Wow! would that minty wax hurt!) How is it that doctors don't do stitches anymore?

I called back Descartes. He stopped at Ace hardware. I poured rubbing alcohol over it, pinched it together and he glued it together with Krazy Glue. It's not pretty, and it's not completely healed after nearly a week, but it's okay. I'll live (clearly), and I have about $500 more dollars in my pocket for skipping the stitches.

Hope There Aren't Any Emergencies

Our emergency contact sheet is laughable it is so out of date. The only accuarate thing on it is Jake's name and date of birth, and our address. It so desperately needs to be updated, and here's how I know:

Since the last time we updated the sheet:

# of people to contact who have moved out of state: 1
# of families we have not seen in person in over a year: 5
# of divorces:1
# of new families we would actually call in an emergency who are not listed: at least 4
# of people who now go by another name because they hated being called "Betty": 1
# of doctors we no longer see:1
# of medicines now taken, not listed: 3 regularly, 2 others on occasion
# of additional diagnosis: 2
# of diagnosis no longer accurate: 2
# of teaspoons more of Motrin Jake can take now:2
# of schools Jake has attended since the phone number on the list was accurate: 3
# of additional cell phones now in use since list was made: 2
# of changed phone numbers: at least 3 (but then again we haven't talked to some of those people in quite a while.)
# of aides we have gone through since that woman was listed: at least 5
# of different office numbers Descartes has had: probably about 12
# of additional children we now have: 1


only the grandparents and my friend Pollyanna will go unchanged... and Jake's list of allergies goes unchanged too.

The Gift of Time, from our Friend Facebook

Stephanie taught me to brush my teeth in the shower for the ultimate in multitasking and to avoid getting breakouts from leftover toothpaste dribble on your chin; that was seventh grade. Kristin tried her best to teach me how to tell time in the first. I learned to love the Dallas Cowboys (or at least the silver pencil from that cool set of NFL pencils) from Craig. And there was that amazing family of singers, Liz, Ann and Mary (and their brothers, Andy, Pete and Jim) who taught me so much about music, harmony and devotion. I learned about Jesus and mayonnaise from Tricia, and went to Hebrew school with Liz. Julie paid me a quarter for each cigarette butt I could find after her infamous high school parties, and I learned how to French kiss from David at the roller skating rink.

I figured out you could talk about race without being a racist with Jeff, and that the color of my homecoming date didn't matter to my parents at all when I went with Tom. Jill (or Jiy'l as she called herself then...) taught me how to rat my hair, and I got scared by a movie the first time when I saw Cujo at Claudia's house. Rachel taught me humility and the value of charity, and I learned how to clean up my own high school parties with Kristi. I learned how to hoist sails with Susan, and had my first crush on Jason.

Tracy and I wrote so may poems back and forth to each other I'm surprised we don't both work at Hallmark (Hugh Prather had *nothin'* on us!), and I bought a bottle of Drakkar Noir for Brian in junior high because I a) loved the smell and b) thought he was wonderful.

I loved the way Margot dressed, and swore that I too would wear a scarf someday. I only began working at the Gap because Emily worked there. She quit right before my first day and I stayed for 11 years.

and of course I could go on and on and on, because I rarely meet someone who doesn't teach me something, and most of the time, when I encounter a situation that is similar later in life, I think of that person most every time. Not most times... really, it's every time. So this means that *every time* I hit a note that fills in the chord, whether I am singing with others or the radio, I think of Liz, Ann and Mary (and their brothers, Andy, Pete and Jim), and Tina too, and Jenny and Briana. Every time. That's a lot of people, and it doesn't even count all of the people from college, like Andria, Katie and Susannah and Stacy, and Susan, and Erin, and, and....
then, not only do I recall their names (or their faces if their names are gone, or the relationship was brief..) but then I wonder where they are, how they're doing, do they have families? Are they happy?

so I have decided that Facebook is actually saving me time. At the very least, it is decreasing the amount of mental clutter I sift through daily. It works like this: I reconnected with one of my college boyfriends, even emailed back and forth a bit, looked through each other's photos. Then, I stopped wondering, every single time I saw a yellow light, whether he was okay, and had figured some things out. He has. He's okay, so I *stopped* worrying every time I saw that yellow light (that trigger is a long story about a car accident he was in with his "next girlfriend"...)

and that family Liz, Ann and Mary (and their brothers, Andy, Pete and Jim)? They are all great too. And so is Tina.

and I know Liz is on a plane to Geneva right now, and that Kristin is having trouble with random texts from Gautamala, and Tom is expecting a baby soon. It's all right here on my laptop.

Facebook, holding on to all of that information, all of that history, so I don't need to any more.

Thank you Facebook. Thank you.

Happy Birthday!

I got a chance to go to Jake's class today for his birthday celebration. He is just so comfortable and happy at school. I brought "naked" cupcakes and cans of that pre-fab icing with some knives from Ikea so each kid could frost their own cupcake. It was very messy, but fun.

What an amazing 9 years it has been. I have learned so much about myself and my abilities and frailties. Jake has grown and learned so many things we were never sure he would learn, and he is hitting another stage of growth... little things, like how he came upstairs for breakfast this morning and sat in his chair to eat, rather than his usual drive-by Cheerio swipe. He stands still to put on his bus harness, and cooperates when getting on his shoes. He is present so much more often these days.. in the moment, and paying attention, wanting to participate, not throwing himself to he ground every 5 minutes because he is so frustrated. He has more patience with us, and smiles more. He put his arm around me when I laid next to him in his bed, and asked for "moh tic" when I asked him if he wanted "more tickles". He is able to share space with Lucy, allowing her to get close to him, kiss him, hug him and tickle him (and "help" open his birthday presents).

and he's healthy, and safe and alive, and ours, and we are happy.

Today, we are happy.

A note from Jake's Teacher

"He walked around the school and played soccer (kicking the ball towards the goal). He had a good day. He ate yogurt with the spoon, a little messy, but he ate independently."

So I am calling that a good note home. Jake has been so happy, and calm when he comes home. Tired I'm sure, but a happier child in general. We've been able to walk him down to the van in the morning (we do this as a family with Lucy still in her pajamas most days...we look pretty darn hilarious.) and walk him back up at the end of the day. He has walked nicely to Lucy's class to pick her up after school, playing on the kiddie carpet while we pack up her things each day.

Lucy is thriving at school. Wednesdays we've added soccer, which she love *loves*. She is just growing up so quickly.. how cliche is that? We just finished watching The Wizard of Oz with her. She really enjoyed it, and when I told her I didn't like the flying monkeys when I was younger she reminded me that a) she is very brave, and b) it is just television. It was a great experience to sit on the couch with Descartes and Lucy and eat popcorn and watch a movie like that. Perhaps this next year will provide an opportunity for Jake to do something similar. He is much better in theaters than Lucy, but it would be so lovely to snuggle as a family.

Jake turns 9 on Thursday. Nine Years Old. Wow. Finding a gift for him has always been difficult, or at least it's been hard since he officially left the baby years. This year I think we've decided that we want to get him this bike trailer by Wike. We have the smaller version which he can cram himself into, but it really can't be comfortable for him. He loves to go on bike rides, but I don't see him having that physical capability for awhile, if ever. That is just a lot of coordination. One set of grandparents offered to send him to Winter respite camp, but I am so ticked off at that camp that I really don't want to participate in their shenanigans until they get it together (or at least until I break down and try to get Jake into Summer camp.) I am sick SICK about it.

Actually, it's sort of my "perfect storm" time of year. With school starting and crazy weather and that unfinished summer to-do list. It's always hard for me. I definitely have more optimism and a stronger sense that we are on the right track with Jake, but birthdays are milestones none the less, and I cannot help but note where we are, where we're going and what the road looks like these days. And while I had great intentions, time crept up again, and Jake currently has no birthday party planned, and on his actual birthday I won't be with him. My parents are coming into town on Thursday so we will get together with Descartes' parents to celebrate Jake this weekend. This means sometime between now and Saturday at noon I need to make cupcakes for Jake's class (for Thursday) and a chocolate cake for the family celebration. Lucy has suggested a Thomas the Train cake. Right now we are looking at Duncan Hines.

Despite sounding cranky and awful, I really am feeling happy and hopeful. I'm guessing this time next week I won't remember any of this current anxiety.

50's day for Lucy

I did it.. I made something someone could wear! I can officially cross it off my 40 by 40 list I cannot believe I actually accomplished something....from beginning to end. It's been awhile. My sister, Demanda, was here last weekend and encouraged me through the project. She also made a pretty little underskirt with tulle for the skirt, which Lucy found itchy and took off before we left the house.

Descartes' parents are on their way to our house so I can take them to 50's day at Lucy's school, then we will come home, I will race around like a mad woman packing, and we'll drive to Tahoe!

Thanks to Jaster and Demanda for being our weekend getaway.

I think things are coming together a bit for me..or at least nothing is completely coming apart at the seams right now.

With a Rebel Yell!

This was the hair Jake had this morning.. completely untouched. Last night I took some medicine that made me pass out until about 4am, so it *is* possible that he went clubbing while the rest of the family slept.

*****

We had Jake's IEP yesterday. It was so fantastic to hear things like, "He has so much receptive language. We really need to focus on how he can better communicate his needs to us." They've also noticed Jake's sense of humor. And you know what else? He's not getting away with his "I drop on the floor to get what I want" bit. We have a behavioral plan in place.

The schoool district has been wonderful, and broght the software that had been ordered for Jake last year. The system is called Intellitools and I have no idea how to use it, but I am going to work on it this week at home and then teach his teachers and the SLP at school.

Notes About Jake

These are the notes I gave Wonderskool when Jake began school. I just got a copy of proposed goals from the teacher this afternoon, and we will be working on them together tomorrow morning. I got teary when I read her goals for Jake. It is so very clear that they see him, really *see* him.

The teacher wanted a cheat sheet on Jake so they could know a bit more about him before they met him in class, so here is what I sent:

Language

Jake is considered non-verbal, but speaks on occasion. When he does it is relevant, important, clear, and often funny. He has also spoken in Spanish.

He has sworn in frustration and noticed the rainy weather by saying “agua”. He has made commentary about a bad presentation “That’s stupid.” and expressed affection by saying “love”. He will say “uh-huh” and “no” at least once a day in response to something, and we have heard him say “Mom” more often in recent months. He signs “more” by using his left hand and tapping it against his side. He does not use any other typical signs.

He will often squint or twitch his eyes closed for a yes response, and when he is happy it is very clear by his utterances.

Physical

Jake comes with a diagnosis of CP, ataxia which basically means he sometimes looks like he walks like a drunk. When he is more tired his physical disability becomes more pronounced. When he was younger much attention was focused on his physical disability rather than any behavioral or academic issues because we all so desperately wanted him to walk, which he did just after his second birthday. He walked completely independently within that next year, and has slowly mastered many typical milestones: stairs, walking over objects, climbing on top of things (but not ladders) and just recently jumping rather than walking off of a low height.

Jake has low tone, and quite often his slouching and putting a foot up on his chair looks like a behavioral issue, when he is really trying to get more support for his trunk. He will cross mid-line, and uses his right hand almost exclusively, but has very poor bi-lateral coordination and so cannot pedal his tricycle. He has not mastered pincer grasp, but uses it on occasion, and he does not use both hands to carry objects, choosing to rely on his right hand against the item and his body instead.

In the last six months he has finally handed me an object when verbally prompted, and was able to use this skill again with another adult.

Academic

While it can be difficult to assess Jake, we believe he knows his colors, letters and numbers. When completing discrete trial learning so we could get a base line for each color and number he became increasingly bored and non-compliant, so we went back to asking him to choose from a field of four and he has at least 80% accuracy. Of course if you ask him for the red crayon he may take all of the crayons and leave behind the red one, rather than ever hand you the red one himself

He regularly uses icons, and a four-talker output device. He has just moved to an eight-window device.

He does not like hand-over-hand in general, but this often has to do with how much he likes his aide. Because his grip strength is variable, and his fine motor skills are so poor, he does not hold a writing instrument “properly”, or use scissors.

Two years ago he could not get his hand into a bucket a foot across, and he can now get his hand in and out of a pretzel bag without knocking it off the counter.

Self-care

Jake will help with dressing by putting his head through and placing his arms and legs into the proper parts of the clothing. He cannot pull off his own pants on a regular basis, but when a pair of pants was bothering him recently (tag issues) he was able to remove the pants by himself (but since we did not see him do it, we are just guessing that he used his feet to step on the legs and pull them off).

Jake is not toilet trained, but knows when he is wet/soiled and will often come to us to be changed. He will not eat wearing a wet/soiled diaper, and is showing an increased need for privacy by closing the door after we enter the bathroom. He is probably ready for a timed-void regimen.

Jake does not mind having his hands washed, but he does not ever liked to be held down so washing one hand at a time is the most successful model.

He has a high tolerance for pain, cold and heat, so we make these choices for him. When Jake is in physical pain due to injury he becomes silent and breathes haltingly. He was able to walk around our backyard with a three-inch nail all the way through his foot barely limping. He is constantly covered in bruises, and scratches.

Medical

In addition to typical Autism symptoms, CP ataxia and global developmental delay, Jake also suffers from two other issues.

“Episodes”

In the past: Pain from unknown source for 9-11 days every 5-6 weeks “episodes” resulting in near loss of sleep, severe agitation, self-injurious behavior and complete non-compliance. Jack also suffered from panic attacks, which could blow up into major tantrum/agitation.

Current: Pain has been partially attributed to migraines. Episodes continue to come every 5-6 weeks; duration has been decreased to 5-6 days. Severity seems to have diminished slightly. Reduction in symptoms can be attributed to better use of psychotropic drugs (Zoloft, Valium), better communication between home and school (to identify early symptoms) and use of Maxalt, an anti-migraine drug. Panic attacks have decreased dramatically.

Jake still has severe agitation during episodes.

ADHD

In the past: Inability to sit still in school, unable to calm down for dinner at home. Complete inability to eat in public, difficulty being calm enough to safely be a part of the community. Escaping, physical non-compliance led to (mild but constant) injury of both parents. Use of Adderall was ineffective after 6 months, adding late afternoon short-acting Ritalin had mild success.

Current: Jake now takes 18 milligrams of Concerta which lasts through most of the day without the side effect of aggression or tears as the medicine wears off. Evening (6-8pm) is still difficult because the medicine is out of his system, but his behavior is more manageable and not as dangerous to himself or others. Camping, hiking or other outdoor activities (including a grocery store parking lot!) which are not safely guarded continue to be a problem; Jack’s hand must be held AT ALL TIMES or he will run away.

Social/Family

Jake will greet people by grazing them with his hand, or by looking at them with a sideways glance. He has recently shown much more intimacy with his grandparents, nudging them to hold hands, and leaning in for hugs. If you ask him for a kiss or hug he will lean in if he wants to have it happen, or lean back if he does not. He recognizes familiar people and places, and develops strong attachments to his caretakers. He is a physical child, but won’t hold still for long. He loves to wrestle and be tickled.

He is gentle with his younger sister, and cautious in general around small children. He smirks when his sister cries to try to get what she wants, or for an unnecessary reason, but is quiet and attentive if someone is hurt.

He enjoys visits to Tahoe to visit his cousins, and likes to watch other kids his age engage in typical behavior. He is not violent towards others, except to flail in an attempt to disengage from the activity if he is in distress.

He will wait until another child abandons a toy before seeking it, but will circle around it while the other child is playing with the toy. He has hidden toys before to make sure no one else gets them (or at least it appears that way.)

When people treat Jake with respect, he normally proves himself to be a sweet boy who enjoys interaction with adults and children. When his caretaker, or those around him are unsure or disrespectful (speaking unkindly about him) he is uncomfortable and will not be persuaded to demonstrate very many abilities.

Becoming a Citizen

Lucy began reciting the following in the car yesterday when I picked her up from school:

I pledge allegiance to the flag

of the United States of America,

and to the reflection

in middle of sand,

one nidgeck, under God,

invisible,

with liverteep

and justa leap frog

Starting to Breathe

So I had a massive migraine today, and it occurred to me that perhaps my body doesn't understand this new feeling of stability and is going into some sort of hyper drive, creating its own sh*t to try its best to stay unhappy.. because nearly everything is going really, really REALLY well. After a rough afternoon, I am now feeling much better and managed to get finish some paperwork and put together a little board meeting...and heck I'm even writing, which has not been happening very often lately.

The scoop:

Jake **loves** his new school. He runs upstairs for breakfast. He waits at the back door every morning when he is done eating. He is cooperative on the street when we put his bus harness on, and once he is zipped he turns around and gets into the school van and goes back to sit in his seat with very little prompting.

School highlights:

• Jake said "rectangle" on Thursday, and "thirs..." for thirsty on Friday.
• He walked around the campus and when he got tired, instead of dropping to the ground in protest, he got into the wheelchair he was pushing
• He is allowing hand-over-hand help to do ART, and other fine motor like using scissors.
• When someone tries to interrupt his schedule he taps his schedule book to remind them of where he is supposed to be.
• He participates in every school activity including yoga, music and P.E.

Home highlights:

• Jake comes home happy...everyday...
• We took a road trip to Southern California, and stayed with my parents instead of a hotel. Jake did very well almost the entire time while we were at the house, and only had one (albeit large) incident at a restaurant.
• Lucy and Jake have been interacting in very sweet ways wrestling and even snuggling in bed with mom and dad.
• Jake has been awesome visiting Lucy's new school, which he must do just about every day since his bus arrives at the exact time her school lets out. He has been calm, relaxed in a room of three year olds and has not for even once instant given me any trouble walking to and from the car (the entire school is built into a hill.)

Lucy is loving her new school. She took off the first day, went to the opposite side of the room from me and began to play. She turned to the girl next to her and said, "My name is Lucy. I'm going to play babies. Would you like to play babies with me?"

So far she wants to go to school every day "except not on Saturday", and she cannot remember any one's name. She is friends with "the girl with the blue bow", and "the boy in the red shirt." We've met lots of nice parents, and Lucy has apparently been lovely every day. Her teacher Ms. Rudy has even gone so far as to say that Lucy was "always"polite. She does not want to leave school, and it has taken at least 20 minutes each day to convince her to leave with me.

I still have much to do to feel successful at this Special Ed PTA thing this year. I didn't realize that I would actually feel any additional pressure when I changed roles, but apparently Sage did even more than I knew...and here I thought we did it all at Peet's Coffee on Tuesday mornings. We have a pretty good plan in place, but we need to add new member to our ranks so none of these amazing core people get too burned out.

And the house may regain some badly needed order after 3+ years of crazy Lucy and pregnancy before that. All of the clothes in our house are currently clean and folded except what we wore today and what we have on right now. Of course someone helped me get it to this point, but I have decided I am going to need someone to help for a few more big projects.. it didn't get this crazy around here over night, so I am realistic about how long it will take, but little by little, my hope is to cut the amount of stuff in our house by 1/3 by next summer.

Then I will really have space to breathe.

Going to bed now...smiling.