I Don't Hate Autism, I Hate Migraines.

Last night my baby girl had her first migraine. Or maybe it wasn't a "real" migraine, but it was a headache so big, that it made her cry on the floor, holding her little seven-year-old head, while afraid to touch her scalp. It made her need help lying down for fear that that her head would 'crash.' She wept and moaned, and looked scared by how the pain took over her entire brain and she told me it made her unable to think of anything else.

myGirl at 7

She didn't have the aura that I get, though she found it painful to read or look at light. It was a headache that built up over the course of the day, and had not diminished after water, food, exercise, or relaxation. She was so miserable, and almost unable to be understood between her sobs and pleas for help.

We have the tools to make those kind of headaches go away at our house, and so with a cool glass of water and a magic melting pill (Maxalt) she was able to crawl into bed, and lay flat, and eventually her swollen eyes closed, and she slept. She awoke today pain-free and chipper from a solid night's sleep. 

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I don't sleep all the way through the night very often, between checking on children, and restless dogs and the occasional bouts of snoring (mine or my husband's, or the dog's) I awake at least once an hour, and I get out of bed 3-4 times a night to be sure that the hatches are truly battened down and no one has escaped, or died. But mostly I fall back asleep easily, unless there is something big playing around in my mind.

Last night, each time I awoke, I realized I had been expecting something. I listened each time waiting to hear the sounds of un-soothed uneasiness. I had been expecting Lucy to be throwing herself around her room, or sobbing, or screaming in pain, because I had been triggered, and I remembered all of those horrible nights when Jake was younger. All of those days we had before we knew he had migraines.

Watching Lucy on the floor of the hallway last night so upset, barely able to speak, I realized how lucky we are that we figured out Jake's headaches at all. Right in front of me was my eloquent daughter with all of her ability to speak, unable to communicate her needs; how did Jake ever stand a chance? 

myBoy at 7

It took us years-- years of testing, and reading, and researching, years of praying, with people we barely know, praying. We drove 'round and 'round, and devised elaborate set-ups to rock him gently even when his body was too big to be held in the gliding chair, or the IKEA swing. We hired caretakers to allow us to sleep, knowing that he would be crying and screaming all night long. We made his twin bed into a giant gated box so he could at least throw himself down onto the mattress over and over again. We took turns holding his hand as he leapt up from between us in our bed and threatened to fly off onto the floor. We tried to keep him safe even as he knocked into and broke our noses, and his grandparents' glasses. We tried to keep him eating and drinking. I remember holding him, crying with him, and making him every promise to try to help him, feeling like I was failing when I had to take a break and pass his care to my husband. He was at least seven before we had a handle on it.

And for all of it, as bad as it was for Descartes and I, and how ashen we got, and how it affected our friendships, and our careers, and our health, and our marriage. I know that it was so much worse for Jake. It was so obvious he was in pain, but no spinal tap, MRI or genetics test could tell us why he was biting at his own hands in frustration. You can still see the scars on his beautiful hands.

Those years before we figured out the migraines are often a blur, sometimes other people need to remember them for us, but I do recall how sad Jake was. So very, very sad. I remember the desperate look in his eyes, like he wanted out of his own body. I remember how he yelled at me, and I just kept hoping that the sounds would turn into words that I could understand, so I could help him. Not being able to soothe him was the most helpless feeling I've ever had.

He had all those sounds, and actions, and giant movements (despite his cerebral palsy), to try to tell me something, and I just couldn't understand the one thing he wanted to tell me: Mom, I have a migraine. 

***

Sometimes people in the online-world think that Jake must have very few needs because I speak about parenting him without saying things like "I hate autism." or "Autism can suck it today."  I have never felt like something "stole my child," or that the "real child" is "hidden behind the autism." I don't believe that saying there is an "autism epidemic" helps my child, or my family. I don't believe that autistics are burdens on society. But just because I don't buy in to all of that doesn't mean I don't find this particular flavor of parenting harder than I thought it would be. It doesn't mean that I don't sometimes long for my son to encounter the world with fewer hurdles. It doesn't mean that I don't want, sometimes, for things to be different than they are. 

But those notions or longings and desires are not always about autism, and my guess is that similar wistful thinking happens for all kinds of parents and people all the time.  I don't need to hate autism to want my son to have an easier time at things, just like I don't hate being tall just because no store-bought clothing ever fits me properly. Autism is intrinsic to who he is, and you can't hate a part of your child and not have that child feel like they are damaged goods. 

I don't hate autism. I hate migraines.

Snapshot of myBoy

Jake had a most successful ride on the boat this weekend. Happy and snuggled next to me, comfortable (enough) in a life jacket, and following all the rules. He had a smile on his face nearly the entire ride, and was very happy. It means there will be many beautiful summer days ahead cruising around the lake with family and friends. And we are thrilled any time we can add another fun activity that is multi-generational and/or multi-family. I was very relieved, and it got me thinking about how much Jake has grown and matured in the last six months. When I went to look through the posts here to read his last birthday post I realized I never actually posted it. So here is a snapshot of Jake from October 2011. 

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Jake turned eleven a few weeks ago, and before another moment goes by I want to remember a few moments of him at this age.

He has trouble sleeping. Often he will fall asleep early in the evening, then wake up from 9-12 and wander around his room, laughing, playing with toys. If you go to his room he will run to his bed and pull the covers up over himself, but tap the bed to encourage you to sit awhile. He still loves it when I sing to him, and he'll let me pet his hair again after many years of not being able to be still. He lets me share a pillow as he tries to fall asleep.

He's always loved the beach, then he loved the shoreline, and now we've added water. First he jumped into the deep end of a friend's pool (like all the other pre-teens there), then he went in the lake, then in another pool, and another. He's not as stable as he'd like to be, but he will hold hands without clenching me too tightly, and he loves it when all four of us were together splashing in the water.

He eats the rest of my lunch that is sitting on the counter, the minute he walks in the house after school. Then he waits at the counter tapping his fingers until I serve him another snack. He's rail-thin, and constantly moving. His hollow legs fill up with an hours-worth of snacks until I can bear no more and force him into the backyard to play. When I turn my back he walks around the kitchen until he finds the one food that was not "put away" -a pear. He takes a big bite, laughs and throws the pear onto the counter before slipping outside to play in the afternoon sun.

He can get in and out of most cars now by himself. Motor planning has never been easy, but he's got it now. And he can "scootch over" in a booth--if he wants to. The more his body cooperates, the more brainpower he can use on other things.

Given the chance, he will sneak down the stairs and crawl out the dog door. It's a game now for him to see how fast he can get out there..will we leave a gate open? will we leave the dog door unlocked? will the door to the hallway blow open in the breeze allowing for his escape? Once he gets out he yells and laughs very loudly so I will know he's there, but I know he's there. No matter how much I try, I am always 45 seconds behind him, which is just enough time to get outside and make mischief.

He greets guests now, and says goodbye too, in his own way.  A brief pass by and a gentle brush of his hand across your arm says hello, and more regularly he will walk you to the gate as you leave. It's possible he's just waiting for you to leave it open behind you, but he quite often will stand at the gate until your car drives away. He cares that you've been here.

On a day that's too hot or too cold, I ask him to settle in on the couch and watch a show-- and he does. He loves Mythbusters. I used to think it was fluke, but he will come in and sit on the couch if he hears the voices of Jamie and Adam. If the tele switches over to record a news program he leaps off the couch to find something else to do, or slides the remote control across the floor towards my feet.

He can take handful of cereal out of a box on the counter without spilling the entire box onto the floor; not every time, but most of the time. Regardless of his success rate, he's trying, and I think he sees the benefit; the more careful he is, the more independence he gains. And independence is what any eleven-year-old boy craves.

He's gained so much maturity in the last year. I really feel like he is taking the time to connect to us, which is probably because we are trying to do a better job of listening to him, however he is communicating. More than ever, we are offering him choices whenever we can, rather than assume what he wants, even if I know what the answer is probably going to be, because he deserves to have his opinion heard.

He is closer to being a young man than being my baby now, I know that, but I am thankful he still has some of that little boy sweetness left--just enough clings to his hair that I can remember his tiny baby face when I kiss him good night in the dark.

My Funny Valentines

Valentine's day is filled with chocolates and roses and lots of those horrid balloons and white stuffed bears that only come out in February. We do none of these things. My daughter saw a balloon with a cat on it recently and said, "Let me guess Mom, you double-hate that one."

Descartes brought home some yummy stinky cheese and delicious bread. I usually make him a heart-shaped meatloaf (since I think he fell in love with my meatloaf before he fell in love with me), but this year I opted for Banh Mi one of my new favorite foods because what's not to love about these flavor-filled, flexible sandwiches? A new tradition is born.

We finished Lucy's valentine's cards just before bed last night...I felt guilty that I did not make cake pops, stick lollies to hand-made cards or shape hearts from doilies. She had no sense of this, being perfectly satisfied to give Phineas and Ferb, and Disney Princess cards to her kindergarten friends. Her teacher gave her a Disney princess card, as did half the class. Phew. And she didn't mind that her extra-special card to once certain boy in her class did not get her an extra-special card in return.

I went to Jake's Valentine's day party at Wunderskool. I had great intentions to make a special blah blah blah for each of the children in his class, and something even lovelier for each of the professionals who guarantee my child's health, happiness and safety while encouraging him to learn every day. I decided to show up instead. He saw me as I was walking in the parking lot and headed for the gate to greet me.

I love the look my kids get when they see me across the room, slightly unsure of how long I've been standing there. They grow so fast these days it can take me awhile to find them in their circles of friends and teachers, and they both have darker hair than I imagine they have when they are apart from me. When they see me, there is a smile that spreads across their face, and it fills me up, makes me whole again. Lucy generally calls my name as if she has just greeted a dear friend from college she hasn't seen in years, and Jake will touch my arm with one finger, tracing the space between the radius and ulna.

Jake took my hand and held it later in class while we were waiting for some treats. He took my hand and lifted it to his mouth and kept it there against his lips. Of course I was chatting away with the aides in the class, teasing Jake and his friends, so it took me a moment to register that he was kissing me, kissing my hand. I thanked him for the very nice kiss and he put his arm around me and pulled me in laughing. It's nice to have those moments with him, especially because he is eleven, and there aren't that many more years when he is going to want to hold his mom's hand at all.

Stretch

I'm responsible, capable and able to make good decisions in a crisis, but I am not a very 'calm' person by nature, so yoga, with it's years of practice to become a master, and it's zen-like relaxation... the silence and the named poses, none of it seems like it would be a good fit for me. But I've tried.

The first time I went to yoga was with my dear friend BQ. It was "relaxation yoga" at the beautiful YMCA near her house. We took our precious baby girls who were barely toddling, and probably both still nursing, placed them in the uber-awesome childcare with seasoned staff and happy decorations and ironically ran to make the class. There were mats to get and blocks to place and blankets to fold; we filled our water bottles. Class began by lying down on the mat. Of course, "lying down" is not an exercise to me, so I was immediately frustrated because if I was going to take any time for myself then DAMMIT it was going to count and I was going to be in shape and healthy for my children, and as I laid there, cursing myself for thinking that anything with the word "relaxation" in the title was going to be my speed, the pager went off from the nursery, and I was called back to pick up my crybaby. As nice as the staff is, they did not appreciate my daughter screaming her head off.

Then I went to Bikram yoga with Pollyanna.. where they crank up the heat and steam until you want to throw up as you pull your right foot up and over, opening up the pelvis.... I lasted the entire class and was congratulated for doing so. Then I felt dumb because I realize I could have left. It had not occurred to me that "quitting" was an option. Because dammit if I am going to take time for myself then it is going to matter and I am going to DO THIS. I went back one more time before I randomly hit my head on the tailgate of my not-so-mini-van and gave myself a bonk that rendered me unable to find the right words to say, and an ache in my head that took a week to get rid of.

Next I tried some yoga/pilates torture with Squid. We went on Tuesdays for a month, for a 90 minute class. It was very hard, and the instructor of the first class made breathing sounds that sounded way too intimate for me to do anything but keep from giggling. The other two sessions I attended went well, but when I went to sign up for more I just could not justify spending $20 a class, when twenty bucks can buy so many other things.

But this morning I woke up and I wanted to go to yoga. I wanted to sit in a room with other bendy humans on a large flip-flop and contort my body, pull at my toes, and try to reach the center of my back... on purpose. I did not grow up in a family that encouraged regular exercise or sports... no discouragement... just no real nudge for athletic achievement, which is funny, because I have great hand eye coordination and pretty good spatial awareness. I do however find that tasks which do not accomplish more than one thing at a time sort of gnaw at me. Treadmill, blech, but a hike? yes. a walk about? yes. strolling downtown to hear music in the square? Count me in.

When Descartes and I are by ourselves without the kids, we lead a much less sedentary life; we walk places, go on hikes, park farther away, take public transportation.  I think we eat better too.

I'm not sure what it is about both of our kids together, or is it Jake's muscle weakness.. and our need to use the wheelchair?  It all makes exercise seem impossible. And when they are at school I feel like I am catching up on work and paperwork and shopping. When would I take a full hour and have it be all about me? Well, apparently at 8:30 am after bus and school drop-off, at least for today, it worked. And maybe it will work on another day this week, or the next. Today I went to yoga, for me. Not to keep someone else company, or because there was a coupon. I went because my body wanted to move that way today.

I'm hoping there are some busier days for our bodies in the future. Jake is inside that trailer in the picture there. He's grown out of his last bike trailer, and as Lucy is old enough now to learn to ride a bike, she's been asking more and more often to go on bike rides as a family. It's a from a company called WIKE, and is both a bike trailer and a jog stroller. Jake doesn't have the skills to ride a bicycle yet, and he gets tired after about 1/2 mile of trail walking. This trailer will get us through three or four years of Jake growing, and hopefully provide our family with some great outdoor time. At the very least Jack had a great time in it being hauled across the soccer field last Saturday.

I think parents with special needs kids forget to take care of themselves, I know I have. Moms generally have a habit of putting themselves at the bottom of the list. But Jake needs a lot of help physically, and if I don't "increase my core strength" and build up a little bit of muscle, it's going to become increasingly difficult to care for him without significant help.

Today, I went to yoga.

Parenting in the Park

arbitrary

I took both of my children to the park the other day. It shouldn't be some sort of big announcement that a mom takes her kids to the park, but I was by myself with my two children, who have very different, needs, wants, and abilities, and I am a chicken. There. I said it. I am a scaredy-cat when it comes to taking my kids out into open, uncontrolled situations by myself, unless Jake is buckled into his wheelchair. He has escaped my grasp so many times, wrenching my shoulder as he goes; and he is fast. And as mature and amazing Lucy is at 5, she really is still a small child who deserves to be looked after on a busy street, or a park... but it is summer, and my children are convincing, so I took them.

Lucy providing high direction, high support

Lucy was very excited about playing in the cool water fountains that are shaped like Crayons. She got to learn the word "arbitrary" when I remembered that the park and rec department turns off the sprinkler fountains between 12pm and 1pm, and again from 3pm to 4pm. Because, apparently we cannot decide for ourselves when our children should have lunch, and a snack. It worked out fine because she got to play in the water puddle that had already been created, and managed to put together an engineering plan to create a dam that rivals the Hoover. She had no problem hiring the one of the unnamed boys near her to hold 'on' the foot sprayer nozzles to collect water, and the other to bring the bucket to her building site. She seemed like a decent overlord boss.

Meandering with Purpose

Then there was Jake. Precious boy who I forgot to put in bright orange before we left the house; I am rather particular about this. When he goes on a field trip, to camp, into the woods, into a crowd, okay, when he goes almost anywhere I put him in yellow, but more often, orange, actually, bright orange. He has his own hunter-safety-orange cozy jacket for camping trips. The afternoon we "lost" him in dappled sunlight when he was only 6 feet away from us was the last time I let him get near any vegetation without an easy way to spot him.

Can you see him? Yeah, Neither can I.

So of course the first thing he does is head for the only corner of the top portion of this park where I would not be able to see him. I didn't worry a bit because the chain link fence runs the entire way around the park. But wait, I couldn't actually see that corner post, and what if the fence were made by two brothers who got in a fight half way through the project and so there are really two corner posts, and a gap between them which leads STRAIGHT OUT TO THE STREET. I was only about 40 feet from him, but if that corner was open, which I knew it wasn't, but if it was, he was only 20 feet from cars pretending to drive 30 miles per hour.

myBoy in urban camo

I ran. I ran as fast as I could, and I lost a shoe on the way because I am an idiot and had thought, "Oh I can just wear my sandals because I am going to sit and watch my children play, and I will put my toes in the warm sand." I ran across the tan bark that my son loves so much with one open-toed sandal and one bare foot, and there he was, in the corner, where the fence was perfectly closed and built to code etc. I tried to give him some space, but it was very hard for me to not be able to see him, even if I knew there was no way out except past me.. because maybe today was going to be the day when he gains that fence climbing skill? We just never know. And if you are wondering if he laughed a little bit when he saw me plucking tan bark out of my sandal, the answer is, "yes." I let him play in the corner until he was done, and it may be my imagination, but as soon as I stopped being riled up about it he stopped going back there.

ooooh so close to escape.

Our visit to this little neighborhood playground, it wasn't all bad, or scary. On the busy street I had to parallel park between two cars that were over their little hash lines into my space, but we did get the safest spot, right next to the path that leads to the park. And every single family that went through the gate on that path, closed it behind them. The weather was beautiful, and Lucy was a good listener the entire time, which was pretty remarkable all by itself. When it was time to go, she left the park without complaint or stomping of the feet.

And while we were there, Jake got to work on those motor skills that are so important. He practiced "jumping off", which is different than "walking off", of something. I got to practice letting my son be outside of my grasp, which feels a lot like being "thrown off" of something. I did put my toes in the sand for a moment, and the kids had a great time playing.

There will be a day when my children don't want to go to the park, not like this at least. An afternoon will come that my daughter doesn't ask me, even one time, to play with her. It's possible that Jake will live somewhere without me when he's older. I want my kids to remember playing and running around. I want the smell of sunblock to remind them of all those days of being in the sunshine in our beautiful park-filled city. I'm trying to remember that these are the days when we should paint, or make lemonade.. or do as Lucy has asked and have a lemonade stand with a painted sign.

And I am trying to get over my fears that by myself, out there, in a park, or on a walk downtown, that I won't be able to keep both of my children safe. I know I am perfectly capable, but there are so many ways things can go wrong, and I've thought of them all. My brain hurts quite often with all the "choose your own adventure" stories in my head. However, I'm aware that emotion does not make fact, nor does a lively imagination, so the truth of it is, that most of the time, everything goes just fine. Everything will be okay, or it won't, but fear has very rarely led to anything good in this world, and it certainly has kept me from some beautiful days in the park.

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

Love and a Dustpan

I haven't swept the floor all week. Not once. It is unimaginable that my kitchen floor could go six hours without needing to be swept, and it has been nearly five days. I am giddy that my feet are free of crumbs, pebbles and warm black dirt from our backyard. 

Sweeping is one of those things that I do not put into the category of "things that make our family different from other families." "Carries wheelchair in vehicle at all times" and "must have a straw or sippy cup available for my 10 year old" are in that category, but sweeping? How many times each day does a family with a ten year old boy sweep the kitchen floor? At our house the number is nearly uncountable.

Jake has been at camp this week. He's likely living it up right now at a dance or talent show, followed by some happy snuggling into his bunk. He's spent days surrounded by singing and crafts and pool noodles and fun. When he comes home, he'll grubby and covered in sunscreen and his laundry will need to go through both pre-wash and second rinse. And by this time tomorrow, these bare tiles will only be a memory.

Because Jake spills cereal, fruit and crackers. He drops his sippy-cup onto the floor creating little speckles of milk that spray across the hardwood, inviting dirt he has tracked in, to cling and accumulate. He takes at least a pinch of soil out of the kitchen garden planter on the porch, and brings it inside with him every time he enters the back door, and he dribbles pebbles and tan bark from his hands, his shoes and his pockets. He has fine layers of grit on him because he sifts rocks from dirt with the patience and endurance of an archaeologist on the verge of a great find. He gets dirty every day.

So as much as I love the feel of treading across cool ceramic tile, it also reminds me that Jake isn't home. And as much as I know he loves camp, I will be thrilled to kiss the top of his little puppy-in-the-rain smelling head. 

And while the reprieve from sweeping has been lovely, it will be wonderful to have myBoy and his sand-filled shoes home.

He Handed Me a Tomato.

I struggled to make the story more compelling to the parent of one of my daughter’s friends. He’s a kind man with two typical children, who asked me about Jake without any pity in his voice. (I hear that voice quite often, and it’s something I have come to understand, but still find hard to get over.) His was more of a genuine query about a child who isn’t often the “plus-one sibling” at the 5 year old birthday jumpy house affairs.

“I handed him a piece of tomato, and asked him not to drop it on the ground. I told him that if he did not want the tomato he could just hand it back to me.” I continued, feeling again that warm sensation of pride in my son, “He stopped, pivoted slightly and handed me the tomato, crossing mid-line, uh, going across his body, to give it back to me." The man smiled, and nodded his head, and looked like he really wanted to understand the significance of what I was saying.

And of course he couldn’t really understand why I stood there in the kitchen with a tomato in my hand, and tears in my eyes. Such a simple task, I’m surprised he had the patience for me to finish telling the story at all. But I know the importance, because for what I think is the first time in my son’s 10.5 year-old life, he followed a direction, in the moment, and made a physical connection with me, purposefully, and he had nothing to gain from his actions. We’ve come close, with a sippy-cup dropped into my hand, or rolled down the counter near me when he wanted more to drink, but this time he really put something into my palm, and he had to make a choice to do it… I wasn’t on the way, and there was no reward, no benefit at all. That unwanted tomato could just as easily have been dropped to the ground. He was even headed towards the back door to play outside, a preferred activity for just about any child, but he stopped and gave me back the piece of tomato, calmly and politely.

It is amazing how much joy we have watching him continue to learn and make progress in these seemingly benign ways; these subtle acts that he keeps adding to his repertoire. It leads us to believe that he is processing information in new ways, able to parse the language and make all the “holes line up.” And if he can hear and process and act on what he sees or hears, that means there is more possibility for him to be able to communicate his needs to us. And better communication means a more connected boy, and a life with less challenges. Like most parents, watching our children succeed is a fantastic double whammy; we get to see our children be happy, and we get to know that the hard work of raising children is paying off.

What I didn’t tell the daddy in the park were the next things that went through my mind. Because even as I stood there in the kitchen, the glow of pure joy, excitement and pride washing over me, pressing me to call every grandparent, those next thoughts went something like, “Oh my God, we are totally screwed.” After I exhaled the joy, I was filled with a paralyzing fear that we are never going to catch up, and there is so much more work to do. He handed me a stupid tomato, it’s not like he got the top score in his math class, or figured out a better way to extract rare earth elements. Jake’s home-aide squeezed me and let me know how cool it was to witness the new skill, and all I could wonder is if he would ever have enough self-help skills to be anything close to independent. Is he destined to rely on other people for every part of his life? I mourned that we have missed the window of opportunity. The plasticity disappearing in his brain, those neural pathways becoming fixed, fearing that moments like these will be farther and farther apart, and there are so many things he still cannot do. As a ten-year old boy I should not be cheering on the simple act of handing me a tomato. He should be skateboarding, and climbing trees in his friend’s back yard. He should be testing the boundaries, and reading Harry Potter or breaking his right arm as he barrel-asses down the slopes on his new snowboard. He should be playing too much Wii, and reading after I’ve told him to go to sleep. He should be asking for a raise in his allowance, and trying to convince his grandparents that the iPad2 is a perfect gift to give a graduating fifth grader.He should be doing so many more things at this age, and there I am pathetically sniffling over a piece of juicy red tomato.

Which leads naturally to the third emotions that rang clearly through my brain. First, pride and joy, then fear and sadness, and finally, guilt and shame. I immediately chided myself for comparing my son to some sort of norm; he is incomparable in most respects, to most other children in both deficit and strength. He shouldn’t be doing anything more or less than what he’s doing, and the fact that I let all of those things run through my head meant that I was not present for the child that was standing in my kitchen. My son is not any other child than the one before me, and how he learns and grows and interacts with the world is going to be different than every other child on the planet, autism or not. It’s shameful to dwell on what I thought parenting would be like, what my home would look like, how my children would act, and what they would do to pass the time, and I thought we had long since stopped comparing him to other children his age; it doesn’t do anyone any good to compare. I do not to indulge in the rat hole of "why me?" and try not to get side-tracked by the accompanying envy of lives that look easier, simpler, or more carefree. When we keep longing for a life that didn’t happen, or that won’t happen, we lose all those moments of the life we actually have. And I have a great life.

I tried my best to move my mind back to joy as Jake ran out the back door and I put the tomato in a shallow bowl for him.

While I sometimes can’t help noting the typical-kid milestones we miss, I am, for the most part, less troubled than I used to be. These days I am more focused on how I can help Jake become the happiest, healthiest child he can be, in the most supportive environment. How can we engage him in the activities we have determined make up the core of our family's value system? How can we make him feel safe and heard when he doesn't have a "voice" as others have. And I’m trying to strike the balance between having expectations for my son, and being unrealistic.

So maybe it’s not an amazing story for anyone else, but I know this is part of the joy in my life; I get to witness these small victories. I get to help Jake learn and watch him gain the kind of skills that most people never even notice. I get to be thankful for things like pincer grasp. And I know I will never take for granted his health, his ability to walk, his sneaky smile, or the one time he handed me a tomato.

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This post was an editor's pick today at OpenSalon.com

The Old Red Barn

Grocery shopping this morning,  a mom and her son passed by me in the floral department. She is probably in her 50's because her son looked about 10 years older than mine... and yes, her boy plays for our team: Autism. Right down to the 6 foot 2 inches of young man flapping his hands next to the strawberries and "oooo--Wheeeeing" in the dairy section. I could tell before the stims though, it's amazing how quickly I can spot a child with autism who's in the same part of the spectrum as Jake.

When I see another family with a special needs child, I ALWAYS try to smile, at the child, or the parent, hopefully both, and even though I don't have a badge, a stamp on my forehead or my son with me to prove to her that I understand a little bit about her life, I always hope that a friendly smile will make her feel there is more good than ill-will in this world. I know there are days when I just hope that we can get through one single transaction without a struggle, and knowing that there are compassionate strangers nearby can make all the difference for me. But she wouldn't make eye contact with me, or anyone else for that matter, except her son.

And while I thought it was precious that she spoke to him so clearly, looking directly into his face, in an undistracted and meaningful way, I also found it a little distressing to think that perhaps she has had to block the rest of us out. I felt compelled to go over to her, and make some benign comment about her shoes to initiate a conversation, just to make sure she knew that there are those of us out here, who would help if we could, and know a lot of resources, and could take the cart if things got a little hairy in the parking lot (even though her son was doing an awesome job), and ugh,  I just wanted to take care of her...jeesh. Which then made me feel like a creepy stalker, because maybe she just isn't that social to begin with, but I think what I really wanted to know is this: will I become like her? and will Jake be like her son?

Will I be so over other people staring at us by then that I will stop bothering to make eye contact? Will I look a little more resigned, but braver just the same. Will I look that tired, which is even more tired that I look now? Will my shoulders be that hunched? Will I look like I *really* need a break?

and will my son be pushing the cart? Helping a bit, pausing for a little stim, then back to the cart, not running anyone over, not escaping? Will Jake still be with me, daily, when he's 20? 30? (and will he be that handsome?)

Jake wears a size 6 shoe already (that's an 8 woman's shoe in case you need a little frame of reference.) He is taller and stronger and more like a young man every day. It's getting harder to pretend that he is going to stay a little boy forever when you're shopping for shoes that big. And like so many parents, the future seems so far away right now.

http://www.moore-warner.com/barns.php

For awhile things were so hard I couldn't wait for Jake to get older, and grow out of whatever those troubles were. Then he got older and surprise! that age had its own pile of troubles. And certainly we experienced a lot of joy in there too, but it always seemed like a better version of our family was just around the corner. I am trying to be more aware, and happy with exactly where I am at any given time, and now that we've gained some stability (aside from some childcare dilemmas which are offline stories only), I've been been neither looking back or looking forward. We've just sort of been living, and enjoying, which I think is okay as long as I get back to that planning for the future thing, fairly soon. Sniff some flowers, but stay on the trail. And I want to make sure there's a plan for me too; maintaining my friendships, increasing the vegetable intake, getting more sleep.  I don't really want to end up looking like that old red barn we pass on our way to the coast: confident, but beaten down, still in use but possibly not structurally sound anymore.

Of course I went to the grocery store without a shopping list and came home with 8 bags of groceries, and no plan for dinner, so perhaps I'll start with feeding my family before I move on to the rest of my life.

Give Me A Little Sugar

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

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

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

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

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

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

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

Ten, Ten, Ten

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

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

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

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

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

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


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

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

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

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


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

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

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

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

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

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

******

Happy Birthday sweet boy.

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.

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.

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.

Frozy Toes

We just had a great Easter weekend in Tahoe with my sister and her family. So many things went right. Yes, I said so many things went right.

I think that's how travel is for most people. They just pack their bags and get into the car, or get on the plane, then they check in or knock on the door and then they put down their bags and they enjoy their vacation.

I'm not about to complain about going to Tahoe, don't worry. I already now how lucky we are to have a home there filled with supportive and loving family.. who let us stay there for free (or maybe for a case of Two Buck Chuck). It's just that travel is so difficult sometimes that it makes us want to go back home, lock the doors and have groceries delivered.

Lucy and I went up on Thursday night, so we would be there in time for me to sing with my sister at the Good Friday Tenebrae service. I think it's the first time I've made it in time to practice and be able to sing with her at church. I love singing with her, so it was very special for me.

Lucy and I had such a nice drive. We stopped and ate inside In N Out burger, something she always wants to do and never gets to, since it is often easier for our family to keep driving while I feed kids in the back. She had great table manners and we really enjoyed each other's company. We talked for most of the car ride up.

Descartes brought Jake up after school on Friday, and despite a very big storm, made it in time to put sleepy Jake with the babysitter and still get a chance to go for a drink at a new-ish wine bar.

Saturday we took the kids sledding. Jake didn't last in the sled even to get across the expanse of flat between the car and the hill. The powder was deep, and when he dove off of the sled we were pulling we let him stay there, playing in the snow. I stayed with him for a bit, then Descartes while the other one of us helped Jaster and Demanda with the sledding. Then I heard Descartes holler for me.

Jake lost a shoe. Lost a shoe? Lost a shoe. And of course this was the one time we had left the house without an extra pair of shoes for him. His snow boots had already been left at home, home 4 hours away, so we were pushing it with his tennis shoes. And it's not like Jake is going to tell us where he lost the shoe. Descartes carried him back to the car so Jake could heat up his frozy toes.

It was fine. Jake and I played in the car while the little kids finished sledding, and because they are little and every hill is a mountain, it wasn't too long before the whole gang was back to the car.

I'm not sure I've mentioned it yet, but we are headed on a cross-country trip this summer. We will be flying to the East coast, where we will meet Oma and Papa and their RV (which they will have driven across the country). I am going to the BlogHer '10 conference in New York that first weekend, then Descartes, and the kids, and the grandparents will pick me up at a train station in a state I've never been to (Pennsylvania?) with the RV with a car in tow. I will be detailing the trip later, but basically we spend a few days with my in-laws then drive the rest of the trip across the country with our little precious children, blisfully taking in National Parks and quiet streams and fabulous diners etc.

Except I just started to worry a little bit. The shoe thing got me thinking. I know if we forget anything we are probably going to be able to afford to buy it along the way, and there is an entire RV for Jack to hang out in if we lose a shoe, but what else will happen? I'm starting to get little butterflies about the whole thing. Detailed checklists will begin shortly.

*****

We will probably be blogging (Descartes is going to go all "bloggity blog!") the entire trip, and we will complete some of the same route that Descartes took with his family more than 20 years ago. It should be neat to take photos and take notes of the same places so many years later.

The Man at the Door

The knock was firm.

KNOCK. knock KNOCK. KNOCK.

When I opened the door, the gentleman had leapt back off the top stair, and stood on the landing two stairs below the stoop. He is probably my age, maybe a little older, and between his two hands he is grasping a piece of paper very tightly, and holding it almost at chin level.

"Hello ma'am. I paint the numbers on the street, because it is very important if there is an emergency that the fire or the police know exactly where you live. I can paint the numbers. This is my business license. If you have any questions you can phone the city, but this is my license."

His intonation and affect on the wrong words throughout his pitch immediately quell that annoyed feeling I had, the one I always get when someone peddles at my door. I smile earnestly towards him, then he jumps up one stair and hands me the license. The edges of the paper are grubby, and wrinkled, but the center, where the information is, is perfectly, perfectly, clean.

"How much?"

"Thirty dollars ma'am."

"That sounds like a great idea. We really need to have that done. Do you take a check or just cash."

"I can take a check."

I tried to hand him back the business license but he was bounding down the steps with his grey tool box, and without turning around he said, "No, you should keep it. It has my name on it because it's my business license, and you can get my information for your check."

right.

I read his first name "Hendry" and sort of half-yelled down the stairs at him, "Is this correct? Hendry?"

"Yes ma'am Hendry H E N D R Y. My name is spelled correctly on my business license."

bet that hasn't made life any easier, huh, Hendry?

I closed the door to head upstairs to get my checkbook. I couldn't hold it in any more and I started to cry, sob really.

I went up the stairs and Lucy rushed over, "Momma, why are you crying?

uhm. deep breath. I never know quite how I am going to respond to her questions that have *really big* answers, answers that might shape her whole opinion about her brother or his classmates, or the entire world. I must somewhere be practicing speeches, in my restless sleep perhaps...

"You know how Jake is a special kind of kid? Well, the man at the door came to paint the numbers on our curb so the police and firemen can find our house in an emergency. The man at the door is a grown up who was probably a little bit like Jake when he was little. He was a special kid, and when mom sees a grown up who was probably a special kid like Jake, all grown up with a job, it makes Momma so happy that I cry." (She understands the happy crying thing.)

"You know how it's tough for Jake to do chores at our house, to do jobs at our house? Well, when Jake grows up he will want to have a job, and so it makes Momma really happy to see that kids like Jake can grow up and have jobs."

I write the check. Lucy stands next to me.

"Mom, Jake has jobs at school, right now. He has jobs Momma."

"That's right baby, I guess he does."

I finished the check for Hendry and walked it down the three flights of stairs to him. He was sitting in the street, painstakingly painting numbers on my curb.

"Here's your check. Thank you very much. Do you have a business card, I could recommend you or do you go door to door?"

"No ma'am I go door to door. I have my business license."

"Yeah, that's a great idea to have that. It makes it very official."

"It IS very official. I got it from the city."

"Thanks again."

and I made it back into the house before I started to cry again. This time I went to my room, where Descartes and I had been resting (since we were both sick). I crawled up on to the bed and sobbed. Descartes put his arm around me and pet my hair a little.

"Do you know why, [heave], I'm [deep breath] crying?"

"Yes dear."

"I'm sorry, I can't seem to stop."

"I know. This is why I don't Twitter."

"Why, because you would have to say something like "Grown man with autism comes to door, steroid-induced hysterics by wife ensue?"

"Something like that."

"I hope he doesn't get run over while he's painting the numbers. That's all I need is to explain to Lucy all about the grown up guy who was like Jake as a kid, who had a job, but is now dead in the street. That would really make me cry."

"Yeah, probably."

"Hey, you know? I would be crying even if I weren't on steroids."

"I know. I know. Take a deep breath. It's all good. We're all good."

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...

All Over but the Uniforms

Summer is almost at an end. We've been busy.

Summer School for Jake

was awful. I'm not sure how it could have been worse. Jake did not get along with his aide, the regular teacher was out on maternity leave, school was, at the last minute set up on a different campus, the bus driver was scared of Jake, and Jake seemed to be in a permanent state of "episode". The last day of school I broke down in tears because the aide told me I could not take home Jake's icon book. It was resolved, but not before I made an ass of myself emailing the director of Special Ed trying to figure out what possible reason they had to deny a kid the chance to communicate by keeping a folder filled with laminated construction paper in a box inside a locked classroom. Of course the aide somehow got it wrong and we were allowed to take it home.

Lucy's Birthday(s)

Lucy had I think maybe 5 birthday parties. One with grandparents, one at daycare, one with her favorite babysitters and a buddy, one with her cousins and some close family friends, then finally the last one with her friends in the backyard for a barbecue. They were each special in their own way, but in the future I have decided that you may not have more parties than whatever half your age is (so she should have had 1.5 parties max!) *and* if you want more than 3 you must plan the rest yourself. That should hold her off until she's 10 or so I think. I made cupcakes, I bought cakes. I bought decorations, I made decorations. At her last party, which had the theme "Princesses and Pirates", I was gung-ho that I went to Michael's and spent more on craft projects than we spent on food. I spray painted little boxes which the kids decorated with sequins, foam stickers and such. We called them treasure chests.

Travel

We didn't go as many places as I thought we would, but we did manage to hit the Tahoe basin for every major weekend, and for a week long trip just a few weeks ago to celebrate Descartes' 40th birthday. He refused to let me throw him an actual party, but luckily all of our friends are turning 40, so he still gets to celebrate everywhere he goes. All of our plans changed at the last minute due to major high winds at the campground, so we ended up back in South Lake, so he did get to have a FAB-you-lus dinner at the Un-Buffet. It was not ungood and it was not unbad. We had fun sampling fairly decent food and spent more on cabs than we did on dinner :)

Jake had another round of his favorite thing ever.. Camp. He had a fantastic 1:1 aide for the week, and we actually sent him to the 7 night 8 day camp this year. He came home dirty and snotty and happy (The picture does not indicate much happiness, but that kid was so tired he could barely stand up). His 1:1 actually said "It was a pleasure. We had a great time. He ate a lot, and he loved going on the nature hikes." He soooo did not need to say those things. I didn't get even an ounce of that feeling when someone is trying so very hard to come up with a nice thing to say.

Family

We got to spend time with all three sets of grandparents, and our Tahoe family of course. I think that our extended family has a good picture of what our life looks like these days, and each little branch of family, in their own way, has figured out a way to support us.

It's also been wonderful to realize that our friends are becoming more and more like family. I think we are coming back out of our shell.. that hard coating we put on a few years back when we felt a little alone in the world, and a little (or a lot) burned.

Back-to-School

WunderSkool for Jake begins next week. We have a transition meeting and a bunch of paperwork, and I still have no idea about transportation times, but it will be a fresh start and every time we talk about it Jake gets this little squinty eye and a half smile. I have manageable expectations, but for the first time in a long time I have a bit of hope. I think Jake may actually be heard, and possibly better communicate his own needs. My mom said she hasn't heard me this happy in a long time. I don't know if I am "happy", I mean I want to be, and of course I am, with many many things, but "happy" sounds like "easy" and "simple" and those things I do not know much of lately. I am however feeling more buoyant, and I think that looks like happy. My shoulders don't hurt so much from carrying the weight of the world (cue violins). And life is changing even a bit more because we made sort of an abrupt decision to enroll Lucy in preschool. She did a little interview/trial run last week, and she loved the place, and they seemed to like her too. She will also start at the end of August and she will have French and art and coloring and running about and carpooling and backpacks and the whole deal. She is so, SO excited. I am happy for her because she is ready to go, but I am sad as well because this last year was not the same kind of year Jake had at that age. When Jake was 2-3 I went to the zoo and museums and the park and the library and out to lunch and every where. Lucy got to watch videos in the car as we drove back and forth to Jake's school averting disaster. I didn't get to jump in the car with her and take her to the City for a cable car ride for fear that we would be called back, and I certainly never ventured to the Aquarium. I cannot even count the number of miles I drove to Jake's school last year. I know Lucy will be fine. She has done enough "fun" things to not hate me, but *I* will remember that the last year she was ever at home..the last year she ever had without school... she was trapped in the beige
no-so-mini Van. It will sting a little less when I see her happy face after her first day of school I'm sure.

and so tomorrow Lucy and I head over to her new school to purchase a few uniforms. Tomorrow I place the order for Jake's back to school pants and shirts.

and we start a whole new chapter in our little life.