Incompatibilities

• My daughter and a full bottle of kiddie shampoo. Five minutes alone and she will empty that thing onto any surface she can find, swish her hands around and call it science.
•  A migraine and taking care of three children. I just stole one of Jake's Maxalts because I got the little aura so badly I almost couldn't drive home from the car wash.
• My kitchen counters and organization. No matter how diligently I sort the mail or put things away as they come into the house, our kitchen is a thoroughfare and a drop zone for things moving from one place to the next. 
• My Internet connection and consistency I have had the spinning wheel of Mac death every time I click, despite rebooting. I can't even play Bejeweled because the connection keeps dropping...but only for 2-4 seconds at a time.
• My body and sleep. Okay this is not entirely true. I love to sleep. Actually I love to nap, but the only time I feel like I can have any peace in my mind to work is after the children are asleep, and by then I am tired, and my brain doesn't work as quickly, so things take longer...and it is a bad cycle.
• My son and clean hands. That boy loves to eat, and he loves to play in the dirt. Between the two I have yet to see a day when his hands did not require a reservoir-draining amount of water to get to a non-hazard state.
• My dining room table and dining. Right now the dining room table is my desk and Cross Country adventure headquarters. Two chairs have boxes on them where we have been tossing items  we need to remember to pack, like headlamps and kid sunglasses and toothbrush covers.
• My blog and consistent posting I think I can finally say I have too many things going on, and I am not nearly keeping up with some of the most pressing things. Descartes and I will launch our big adventure on www.haveautismwilltravel.com, well I suppose it's already there. So I do hope I will post more content before we leave, and that you'll follow along on our trip.

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

I wrote this list earlier in the day, in about 11 minutes, possibly less. This was the only time my daughter and her girlfriend were unsupervised. I heard them go downstairs to play dollies in Lucy's room. I was just going down to check on them when they re-appeared at the top of the stairs. 

They were naked, giggling and  

covered in toothpaste. 

bright blue, bubblegum scented (and flavored) toothpaste.

playdate over. 

mommy. all. done.

Whose Life is This Anyway?

He did not put any cake on me because he is a very nice man.

I'll admit, I thought being married would be easier.

In this day and age I thought that gender boundaries would have been quashed. I thought, that since I had clearly married the most romantic and kind man in the world that the sparks that flew in the beginning would be only the base for the fire of our life and that the sweet man I chose would never have a mean thing to say. I thought I would always, and in every way find him charming.

I knew we were better together than separate, and that once together we would be unstoppable in our careers, our travels and our desire to have adventure and novelty. Upon meeting us, I was certain I would continue to hear from new friends what an amazing couple we were.

And having found such an amazing guy from such a solid family,  it never occurred to me that parenting would be anything but joy and pride, with the brilliant little offspring we would create. Our children would be perfect, and well-mannered, and their successes would only bring Descartes and I closer and closer together. Our family would be a vision of success, and happiness. Our parents would be so proud.

yes, I DO have red hair in these photos

I thought I would always be a loving and caring wife, who thrilled at pleasing my spouse.  I thought I was perfectly suited to being married to this man, and when we smiled at each other throughout the entire ceremony I truly thought I would always be that happy. The optimism that surrounded us like a rosy bubble of delight could never be burst, and the people we added to our life would only be more successful and wonderful than we are.

 *******

Our life is so very different than I imagined, and yet we are so much better than those people I thought we would be. Our marriage is so much more real, and raw, and I love my husband so much more deeply than I ever thought I would.

And we are much better together than apart; Descartes and I know each other now. After 12 years we really do know each other, but thankfully we are still learning too; what it looks like to truly support someone in their life and career, how to care for each other when we are both in despair. What we have learned is that we travel well, and we're not scared of really anything when we are together.  Between the two of us, with his strength and my map reading skills, we can get out of almost anything, or into anything, like this cross-country adventure we are almost done planning.

We like each other too. Even when we don't get along, we are good roommates, except for the dishes, which apparently no one wants to do, and we continue to negotiate after 14 years of living together.  I genuinely like my husband, a lot. I think he's funny and smart, and handsome. And the way he builds things, and knows things is amazing to me. Just this morning, he 'hacked' a camera, breaking in somehow and changing lines of code so it would do what we want it to do-- the only obstacle he faced was our four year old daughter sitting on his head.

1998

I'm not as 'nice' as I used to be. I don't think I was ever nice actually. I think I've always had a dark sense of humor and a bit of a snarky streak, but I used to have more optimism. I used to track fewer things, so it was easier for me to remember what is actually important. And I'm sure I am not easy to live with because I demand that you read my mind and prioritize life in the exact same way I do.  I think I am more demanding, but perhaps that happens to many people as they age and know better what they want from life. Descartes is a patient man, tolerant of my drama, but he's figured out how to bust me out of my perseverations, and move our family on to better things.

2010

Parenting has done more to strengthen this marriage than just about anything else. Holding hands during a sonogram while we wait to see if Lucy was growing with all of her parts in the right places, holding each other in a parking lot when we got Jake's first batch of diagnosis from the first official place, helping each other through 52 days of Jake not sleeping, taking turns swinging him or driving, trying to not to yell at each other or our child. Many couples have a few months, maybe a year of disturbed sleep patterns, then they can look back and laugh. We have a life where hard things happen often, but we have learned not to wait to laugh; or at least we try. I think many big, sad things are behind us, and as much as I am rather pragmatic these days, I think I may be coming out of my pessimistic days. Descartes has just been waiting for me, patiently, ever the realist with the ability to take stock, reassess and move on.

I know that my life would be different had I chosen someone else to marry, if someone else had chosen me, but I am so glad Descartes and I chose each other, and that we have this life. I know it's not all perfect. But I think our parents are still proud of us, and I'm pretty sure Jake and Lucy will grow up to be decent human beings under our watch, so at least we know we've maintained one small piece of continuity in this world.

****

I love you my precious husband. 

Thank you so much for another year of life, this wonderful life with you. 

xoxo, 

me

p.s. please consider this your anniversary card. I was not able to get to the store.

That Rush

• Singing Pat Benatar Love is a Battlefield in front of a crowded bar...or singing just about anything in front of a crowd.
• Coasting in to the yard in Tahoe after a bike ride home from the beach.
• Booking a dinner reservation for ten people in New York City to break bread with great people at BlogHer '10
• Watching my son, who appears to be walking aimlessly on the periphery of the group, laugh just before the punchline of a story I'm telling about him, because he's heard me tell the story before, and knows what I am going to say next.
• Looking at a map of our Great Cross Country adventure we are planning.
• Discovering vegetables growing in bounty in our mildly neglected garden.
• Hearing my daughter tell me I am "beautiful candy-sweetness", because I know how much that girl loves candy.
• Making dinner for my family and friends, and watching everyone tear into my homemade cherry pie.
• Just thinking about taking the train from Washington D.C. to Penn Station, by myself.
• Dancing with my husband.

Resistance and Resilience

Four years ago we were sitting in a hospital room. That's Jake on the floor trying to feel the cool of the hospital floor, and that's Lucy, nursing, and that's me, tired, scared, and trying to smile, knowing that these were the baby photos Lucy would see someday.

Lucy was 4 weeks old and Jake had  Methicillin-resistant Staphylococcus aureus (MRSA).

The only isolation room they could find for us was at a hospital in a town 25 minutes away. We didn't know any of the doctors at this hospital, though the doctor who cared for Jake was in residency with our regular doctor. We had never been to this hospital before we checked in, and were immediately escorted to a room across from the nurses station. They placed us in a wing where pediatric patients who needed constant monitoring, but were not ICU, were housed. Because we were so contagious, and they assumed we all were carriers, we were not allowed out of our room except to leave the hospital directly, without stopping. We couldn't even get our own coffee from the room across the hall. We were not allowed in the cafeteria. People gowned and masked before they entered our room, speaking to us dressed as yellow papery ghosts, and I had a newborn. Jake had a wound that grew so fast, and had such a hard time going away that they drew a line around it in black permanent marker so we would know how we were progressing or not. Descartes slept on a tiny little fold out cushion chair for three, or was it four, nights in a row, while I drove back to our house each night with our tiny baby girl. It was horrible, and because of the wound placement, we were all fearful that it would get into his hip bone.

I have never been someone who is scared of people in the medical profession. I am not afraid of blood, or guts or gore. It takes a lot to make me queasy, and I always want to know why. My whole life I have wanted to know why, and figure out a way to fix things. I have tremendous respect for the medical profession, but I have figured out that I actually am as smart as some of those people, I just chose a different path, and this hubris served me well when Jake was covered in horrible wounds that would not heal. I was also so very lucky to have a doctor in the practice who knows us, outside of the office as well, and she knows I am not a sissy mom who brings my child in for the sniffles. When I took Jake to her that day, on only day three of the second round of heavy duty antibiotics, she trusted me when I told her it was getting worse, not better, and that the drugs were not working. I had been watching those red patches, counting them, and I knew. She trusted me, and she made the calls and found us a bed a 6pm on a Friday. Under normal circumstances she is a great doctor, in a crisis, she is an amazing doctor.. (and I will have to ask if I can link to her before I actually do. Can you please ask her if I can M.D.? I know you read this;) )

After we checked in, got Jake settled into some regulation jammies made of some crazy non-flammable material, a doctor came in to see us. She was kind, and greeted us with the proper amount of decorum and an air that let us know she was in charge, because of course she was in charge. Then she told me that Jake would need to have seriously heavy-duty, one-step-down from military grade antibiotics. Fine. Of course. And then she said he would need to have an I.V. for 40 minutes every two and a half hours.

Oh dear.

This post-partum mommy went nuts. I was holding Lucy, possibly nursing her, and I know I raised my voice. I'm sure of it... and I said something like,

"ARE YOU KIDDING ME? HAVE YOU EVER HAD A PATIENT WITH AUTISM IN YOUR HISTORY IN THE MEDICAL FIELD?"

and I continued...

"WE NEED TO KNOCK THIS KID OUT TO BRUSH HIS TEETH, AND YOU THINK YOU ARE GOING TO GET HIM TO SIT STILL WITH A NEEDLE IN HIS ARM FOR 45 MINUTES EVERY 2 1/2 HOURS?"

She looked a little bit, uhm, surprised, and hurt, and stunned, and miffed.

I said, "YOU ARE GOING TO NEED TO GET CREATIVE HERE. GO FIGURE IT OUT!"

and she walked out of the room.

My precious husband said, in the nicest way, and with only a little bit of fear that I might have a knife and be okay with using it... "Honey, that's the person who is going to be responsible for helping our son get better, perhaps you could go a little easier on her?"

A few, not many, but a few minutes passed, and the same doctor came back in...with a book in her hand, open to a page three quarters of the way in.

"What about a shot of the same drug every hour and half? A muscular injection. And we could put it closer to the site of the wound?"

And I clapped my hands for her and gave her every amount of praise I could muster. WHOO HOOO!

Of course I then had to convince the nurse, and the next doctor, when our first very smart, creative doctor had to leave, that we should only put the shots into one side of his body, the side with the big wounds. They said it would be too painful, and I while I understood that, I had thought this one through. I explained that my son only had one side he could still rest on, only one side that did not have a 2+ inch nasty, open wound, and if they took that away he would never sleep. The doctor rolled his eyes at me...literally rolled his eyes, and the nurse, he said, "Wow, I've never thought of that. So the patient can actually still rest comfortably, at least on one side."

I nursed my baby and rocked her to sleep.

It took 3 1/2 more days for the last wound to go down to a level that we could leave the hospital. We watched that last wound slowly shrink from its black outline, reminding me of an atoll on a map. When it looked like we were headed towards health, they let us go home, but his treatment was not over for another week or so. We drove him back to the doctor for a few days after that, twice a day, so he could get additional injections. I think he was on antibiotics for nearly three months by the time he was finally healed.

He has only a tiny scar on one hip, so small now most people would never notice it, but whenever I see it I remember how scary it was, how deeply infected my poor boy was.

*********

This part is bragging: We have never had the MRSA come back. This is pretty rare, because it is really hard to shake. We put a bit of bleach into Jake's bath for nearly two years. We still do not reuse towels (on the kids). We have hospital hand pumps with anti-bacterial at the back door, and in several other places around the house. We swabbed our noses with a special ointment for months. We use gloves for diaper changes. We hot, *hot* dry our sheets, blankets and towels.

Every Dog Has His Day

a girl and her dog

We are a lucky family. There's really no other way to see it, at least when it comes to dogs.

When I first met my husband he had two dogs, Buddy and Shadow. Buddy, a golden retriever was sweet and was a snuggler, always wanting to put his snout under your hand to encourage you to pet him. Shadow was a border collie, and a princess. She was in charge, and one of the smartest gals I have ever met.

I remember going to Descartes' boat, where he lived, and walking the dogs for him when he got stuck late at work. It was the most frightening thing to take those two beloved animals out to the field, and let them run without their leashes. It wasn't scary because they were in danger, it was a safe place where dogs were allowed off leash. No, it was scary because I knew that if anything had happened to those dogs, my relationship would be over. The dogs were in his life before I was, and I knew that if push came to shove, at least at the time, I was fairly certain they would win.

Buddy and Shadow were our first kids. We cared for them together in our new marriage. I cried when I dropped them off at the kennel for our three and a half week honeymoon. Their presence in our life dictated where we lived (not San Francisco, because in 1999 rents were sky high and no one had to take a couple with dogs, no matter what their income or credit report scores.) I think we actually live on the peninsula because of those dogs...we just kept heading south until we found a decent city that would let us rent with animals, and when it came time to by a home we started with the familiar, which was this neighboring city.

Buddy and Shadow were Jake's first dogs. They loved him, and never flinched as his hands clutched fur, his variable grasp not ever knowing how hard or softly to hold things. They made him laugh. When Buddy got liver cancer we were devastated. We went through several surgeries, each one getting us a few more weeks with him. He passed away at home on the cool of the tile in the hallway when Jake was one.

Shadow moved back on to the foot of the bed, and reigned supreme at our house. We fed her steak and rice with melted cheese. I pulled ticks off of that dog, and she loved my little boy.  Shadow lived until March 20, 2003. I remember the day because or entire house had fallen apart slowly; first a horrible stomach virus swept through, then we had a broken microwave, a broken rice cooker, and a broken computer, then the tub backed up into the sink, the sink drained into the wall, flooding our downstairs, war broke out in Iraq, and then the dog died.  She just closed her eyes, sighed and died in my arms at the vet's office.

Dog free, our house was cleaner, with uncomplicated travel plans, and it was quiet, and clearly we were missing something. It was difficult, but we decided to wait awhile to get any animals. Looking back, we had also decided to wait to get pregnant again. By this time it was increasingly obvious that Jack had significant disabilities. That fall he started early intervention preschool and rode the short bus for the first time. Our plans to have a second child were back-burnered for the foreseeable future while we figured out what kind of life we we were going to have. Jake had intense sleep issues, and some self-injurious behavior, and could barely walk independently, even at three. Our life felt a little bit out of control. Someone used the word "autism". We did genetic testing. We saw neurologists. We went to a million different agencies and doctors, and I started this blog.

Lucy adoring Bilbo (with family friend V.)

Somewhere in there we found out about NorCal Golden Retriever Rescue. We somehow, swiftly and happily became owners of Chandler and Bilbo. They came with the names okay? Chandler Bing and Bilbo Baggins. They had not been mistreated in their previous home, just neglected a bit in a "we have a newborn and a small dog, so we don't want anything big around our little tiny things" way.

Bilbo had a snaggle tooth, Chandler had a block head. They were both a beautiful red, and friendly to all they encountered, unless you were a raccoon or a deer or a black cat in the front yard. Bilbo was a love, patiently standing nearby lest you felt the need to scratch someone's head. Chandler was happy being a pillow, a wrestling bear or when unmonitored children were nearby, a step stool.

They were a great pair, brothers from different litters. They happily curled around each other in the back of our van and rode to Tahoe, or any other place, mostly they played with our children. They were Lucy's first dogs, and they loved her.

Bilbo died last summer, after several procedures to drain the fluid from around his heart. He was 9 years old. After the last big procedure we thought we would have some more time with him, but he passed away only five days later, choosing the same cool spot in the hallway that Buddy chose to spend his last hours.

So then there was Chandler. We thought about getting him a companion, but he was fine being solo. He was so easy going and friendly. He would sprawl across the living room floor, letting Lucy use him as a pillow as she watched TV. He was a joy to travel with, and loved playing in the snow when we went to the Sierra Nevadas. Big and fluffy, the ice would stick to the bottom of his coat when he shoved his nose into piles of fresh powder. He got along with other dogs, little children, puppies, old people, everyone except the black cat and the deer in the front yard, and as he aged he would simply put his head out the dog door to bark at them. He couldn't even be bothered to push his whole body outside to tell them to go away.

He got old fast. In a matter of weeks, he went from a little bit of a slow, chubby, dog to an old man who couldn't see to walk down the stairs at night because his cataracts were so bad. He stopped coming upstairs last week, then he stopped coming down the hall, then he just laid down in our room, at the foot of the bed.

Chandler 2000-2010 

He was a good dog. They were all good dogs. Friendly, loving, good to our children, and guests. We've been lucky, so very blessed by all the good natured doggies in our life. I keep trying to think of these furballs as 'animals' and they keep finding a way into my heart. I can't imagine our life without them

Lucy noted, "We can always get a new dog, but we will always miss Chandler." And we will. Thank you Chandler for being such a lovely, treasured part of our family.

Summertime and the Living is...

easy? hard? scattered.

Things are scattered. I think I have more time, but there are more children around, but Lucy has been at camp in the mornings, and at a play date nearly every afternoon, so really there are less, but Jake requires constant monitoring, so I am sort of trapped in the kitchen dining area of my house, or the back yard, so I can't get anything done. Oh, and I feel guilty for not playing with him or taking him any exciting places.

Everything seems to be breaking around here, so I've been running around buying parts, or taking things apart and looking at online schematics, and trying to figure out whether it is better to buy new or fix the old. I was able to fix the washing machine, which made me feel pretty awesome and also pretty annoyed that I spent more than $200 paying someone to fix the exact same problem when it broke last September. The dishwasher is no longer making that terrible noise after I took the entire thing apart and cleaned every tiny part of every tiny part. When someone says "They don't make 'em like they used to." I will now nod my head in absolute agreement.

I have a lot of goals for myself this summer, but I just can't seem to finish anything. Which leads me to one of my first goals of course... I need to let some things go, including giving myself a hard time about everything.

Here are some other things I am going to let go of this summer:

• other emotional baggage
• old cookbooks
• ratty t-shirts, even if I think I should "keep them for painting"
• baby toys, unless Jake really, really likes them
• towels we have taken, almost always by accident, from Super8, the gym, and various hospitals. They are thin and nasty and never ever get soft.
• paperwork that does not matter. Seriously, do I need all of those old phone bills? WTF?
• clothing that does not look good on me
• shoes that do not fit
• beauty products that are past their expiration 
• luggage that is beyond repair
• cracked laundry baskets
• pens that don't work
• mugs I do not like

and that is just the beginning, but I am trying to make small goals and meet them rather than say "I will clean everything out of my house." That makes me feel defeated when I can't get it done.

I need our house and our life to make more sense than it does now. If it is this hard for me to accomplish great things here, I can't imagine how much harder it must be for Jake who has difficulty processing. He works so much better in an orderly environment, and I have more patience for sitting and teaching when our life isn't strewn about my field of vision. Lucy will benefit too, she is trying to figure out how to prioritize things in her world, and learning habits which will follow her for a long time.  If I can teach her now how to have a place for things, how to make order out of chaos, she will go farther and do more in life than I have.

Jake goes to summer school right after the 4th of July holiday, and Lucy has at least two more weeks of camp, so I will have some quiet sorting time when they are off being crazy kids, but it isn't too much longer until we need to prep for our cross-country trip. I have already begun the lists for that.

and by the way, making lists is a great way to avoid doing work. I am an expert.

Happy Happy

right before she makes a wish

She's four.
and she knows to keep gates and doors closed so her brother doesn't "get lost forever." She likes Dutch Babies for breakfast, and playing babies. And wow, she really is a great mother to all of those little plastic dollies. They listen to her and she puts them down for naps, and she rocks them and sings to them and teaches them life lessons.

oh my little bald baby

She loves the soundtrack to Glee Season 1, and understands why someone should not, but might still, "Bust the Windows" (Out Your Car.) We discuss these things on the way to school each morning, along with the prospect of seeing aliens, or at least talking with them using the Dish. I found out today that she can name all of the planets in our solar system, (although one of them is "Jupe-peh-per.").. and did you know that the sun is a star?

When she grows up she wants to be a Cut You Open Surgeon or a Baby Doctor (obstetrics, not pediatrics), or a dog walker. She is willing to go to college somewhere far away, but has every intention of living with us for the rest of her life.

lined up to sing at school

She knows the city she lives in, and can count to I don't even know how high, and add little numbers and crack eggs without getting any shells in the bowl, and she knows that two quarters make a half and two halves make 1 cup.

with her cousins Easter Sunday

She loves the colors pink and blue and purple, and has fallen in love with headbands and ponytails. She loves to dress up. She has worn her Easter dress at least three times a week since March. Thankfully, it's a machine-washable white dress with polka dots and pink tulle underneath and she wears it with tennis shoes. She has worn it gardening, shopping, cooking and to school for every single free-dress day.

sweaty little
party girl

She has no patience, unless you are sick, or frail, or elderly, or hurt, or small, or sad, or tired, or lonely. She knows we stop to help people in need, and we don't stare, we say hello. She has friends and she loves them deeply. Her family is very important to her, a constant topic of conversation, and she grasps easily the ideas of birth mothers, and the mothers that raise you, having more than one set of parents or a family with two mothers or two fathers. She is not bound by blood, she loves and is loved by the amazing community that has embraced us, and has the same sense we do about the friends who've become our family.

Very little gets in her way. She's not afraid of dirt, or the dark, or touching dead lizards. She can keep up with Tahoe boys, and she hikes in princess dresses. She gets emotional, hysterical, and when she can't find her way out of a tantrum she begs to be held, my arms somehow helping her put herself back together.

She loves to sing, and dance and run and only rarely does she blame her brother for incidents or accidents his disabilities could not possibly permit him to accomplish. She is sweet with her brother, but not condescending. Her praise for him, when he does something new or wonderful, is a genuine cheering-on. She almost always saves half her cookie to take home to him. She's sympathetic to his disabilities, but has no problem being upset with him for walking through her play area knocking things over.

She is fiercely independent with her need to do it all by herself constantly in conflict with my need to be on time. And though she sheds me at the gate of most activities, she is still the loviest, coziest hand-holding, creep-in-to-my-bed-at-dawn-to-cuddle,  little girl.

her perfect little hand holding mine
on the afternoon she was born

Right Now!

Everything I need to do needs to be done right now.

dinner, fix washing machine, write two essays, promote/market two things, get ready to leave the house, brush my hair, brush my teeth, pick up Shan.
ugh

ready
set
go

The Truth of the Matter

Jake usually has a hard time readjusting to life after anesthesia. I remember getting my tonsils out and crying and fighting with my parents for days afterward, my emotions a raging mess. There's a term for it: post-surgical depression, although the term seems to be used interchangeably whether you are discussing the depression after surgery, or the recovery from anesthesia. I suppose most people under general anesthesia are probably getting surgery, so perhaps people don't stop to figure out where the depression really comes from, is it the emotional release after a stressful event, or the medication itself, but back to my point.... Jake has a really hard time.

Once a year he goes under general so he can have routine dental care. It is not cheap, but it sure is effective, and the dentist and the anesthesiologist are both so wonderful, I can't imagine not going back to them each year.

The first time we went it was after I saw something red on Jake's tooth. Sadly it was a cracked tooth, half of it missing, and the one on the other side was cracked as well. And of course we have no idea when it happened or how, but we think it may have occurred from coming down hard on his chin and his top teeth banging down on the bottom during some fall he had at the end of that summer. After we found those cracked teeth they were extracted, or at least what was left of them was extracted; He also grinds his teeth terribly. Then we put spacers in, cleaned his teeth and sealed them.

Another year it meant replacing a spacer which had disappeared (did he swallow it?) and filling a cavity. This year it was simple, remove the spacer (one was gone already...again) and clean his teeth. No cavities, no spacers. His teeth are in great shape. I attribute this genetics mostly, but also to the minor but consistent work we do getting Jake more used to a toothbrush in his mouth (a tooth brush that is actually moving and not just being chewed on) both at school and at home. We also make sure he has water every night before bed, he eats a lot of crunchy, plaque clearing food, like apples, and he doesn't have sugary juices all day long. According to our dentist, it's not the amount of sugar you take in, but the duration that really gets the teeth. Eating a pound of gummy bears in one sitting is less damaging to your teeth than drinking from a sippy cup of juice all afternoon. Thank goodness, because I let him eat a pound of gummy bears just the other day.. kidding.

So the joy of no tooth problems has been slightly overshadowed now by the aftermath of the anesthesia. He spent all of Thursday, after the dental work in the early morning,  being groggy and unstable. You think that kid has ataxia on a regular day, add a touch of Versed to that cerebral palsy and see what happens. I could not be farther than 20 inches from him for most of the day. He was starving on Thursday too, after needing to skip breakfast, and we just never caught up on the calories. It seems like he ate or fell down all day long. More problematic was the "bad butt" Jake had Friday and Saturday. It's like his gut just rots, or perhaps we let him eat too much cereal when he begins to wake up, and that's what actually affects his system. Either way it is not pretty for a few days.

Then there is the crying. The crying with tears just kills me. Both of my children can whine and cry and scream and yell, but if they show actual, real, wet, watery tears, 99% of the time it actually means something. It usually means one of them is in severe pain. The most upsetting emotional outbursts are when Jake cries with tears but without an obvious injury. It breaks my heart; he just sobs and sobs, and the tears slip down his face. It sadder than the Native American in that Coca Cola commercial. (How old are you that you know what I am talking about? Ha!) And the crying seems to come out of the blue. And he can't tell me whether his emotions are just welling up and spilling over because of the anesthesia or if there is a new, sad, unknown-to-mom problem.

And then there's the not sleeping. But I'm not really complaining, because this type of not-sleeping does not include yelling (at least not all night) or self-injurious or me-injurious behavior. Last night, Jake's sleeplessness actually came complete with chuckles, snorts and guffaws.

He was laughing and laughing.. and it was, by this time, about 1:30am. He just would not stop laughing. I had already been downstairs several times, perhaps every 15 minutes or so I had visited his room, and changed his pajamas each time.

Why? Okay, here's the truth.

Jake wasn't just awake and laughing, he was also taking off his pajamas (and diaper) and PEEING everywhere. Well, not everywhere, but in little puddles, next to his bed, in the hall, onto his pajamas. He thought it was hilarious. Each time when I walked him to the bathroom he would laugh even harder and try to go back to bed.

This is a big deal and not because I needed to clean up a mess or six, but a big deal in a much more exciting way. And I'll admit this is where I like to take credit for noticing small victories in the face of adversity, but this little game he's playing means Jake is getting closer to toilet training. This peeing on the floor thing is very typical behavioral development for NT kids (at least some (most?) of the ones I've met.) We have a long way to go, but he is learning and using his body in new ways with different awareness. And yes this is part of what I was talking about in that post about shame, but we are going to get there with good structure and consistency..but hey... Jake can now take down his own pants when he wants to pee! That is a huge accomplishment for a boy who does not have pincer grasp, and has a variable grip. Hooray for new physical abilities!

****

He's down there again this evening wandering between the hall and his room and Lucy's room-- four and a half hours past his bedtime and I know he's awake. He occasionally drops toys over the gate, or more likely a sippy cup because he knows I will bring it back to him, and I can hear his feet slipping across the hardwood. And one of my favorite sounds,  his muffled happy squeal as he buries his head in the pillows and blankets. 

So then, back to it.

This Would Make A Great Reality Show

The premise: Without getting divorced, or running off the road, between June 3 - June 16, can you...

• Plan three birthday parties for an almost four year old? Remember to include the guest list, the menu planning and any communication surrounding these parties.
• Wash all the slipcovers and pillow covers from two couches?
• Research, then buy, then install a room air conditioner?
• Take apart the entire dishwasher, wash all of the pieces, make a repair and put it all back together and have it still run?
• Butt your nose into the planning of your 20th high school reunion, send out a survey, then breathe a sigh of relief when the other organizers use the data you collected and take back over the planning?
• Answer 40 emails about reunion any way?
• Go to Costco three times and Safeway six times?
• Break down all the cardboard that has been collecting at your house since January, get it in the car, drive it down the hill and leave it for pick up on the correct day/week of the month?
• Work 18 hours a week at a "real job" with deadlines 6 days a week?
• Cry over a dead router/modem?
• Research, install, reinstall, call tech support, give up on tech support, then reinstall successfully a new modem/router?
• Have your husband out of town for 6 out of 10 days?
• Take your kid to swimming lessons?
• Watch a sappy movie about a puppy with your nearly four old, because life is short and she will only be a kid this one time who wants to snuggle and watch sappy puppy movies?
• Attend a benefit for a really great therapeutic riding ranch?
• Launch an amazing new project "The Thinking Person's Guide to Autism"
• Take your special needs son to the dentist where he undergoes anesthesia and subsequently must be watched for 8 hours so he doesn't fall down on his face.
• Buy your birthday girl a new outfit for her birthday, lose it somewhere in the house and find it again in time for her party?
• Forget that your special needs son who had dental work last Thursday is up all night, each night for at least a week after anesthesia, and cries easily?
• Clean out your mini van?
• Pick up the dry cleaning and wash all the black socks you can find in time for your husband to pack for his business trip?
• Attend an end of the year party for room one at the preschool.
• Clean out the refrigerator?
• Prepare the house for five family members and their one elderly dog?
• Remember to send a Father's Day Card to one of your dads who is traveling out of the country?
• Put together any items you will need in August for a cross-country road trip on an RV?
• Pay the bills?
• Do all of the kids' paperwork for March, April and May?
• Clean out your closet?
• Drive to another city to pick up a prescription for your snk's narcotics, then drive to two pharmacies to get the prescription filled?
• Feel like a failure because you can only see one way your daughter is going to be able to take cupcakes to school, and that's if Safeway makes them?
• Order a sheet cake AND a Belle princess cake at Safeway while you're there, because if you are taking the easy way out you may as well make your life really easy?
• Sleep at least 4 hours each night?
• Drive without falling asleep each day?